Sweet Redemption June 16 2018, 0 Comments
I’ve written about her before. A sweet soul that was perfectly placed in our path to be the hands and feet of Jesus not only to, The B, as she affectionately called him, but to me. A sweet soul who has turned into a dear sweet friend: her name is Kim and she was Bryer's Physical Therapist.
Kindly, gently and ever so positively (and patiently) she helped us navigate the unchartered waters of Bryer’s 11 months. She was assigned to us at 6 weeks as his NICU PT and somehow managed to follow him onto to every floor he landed, always showing up with a smile and a plan…and maybe even a homemade card from her daughter, Maddie. She even followed us home. She went through all the red tape and head aches it would take to become Bryer’s in-home PT. This, of course, was all in addition to her full in-patient case load, not to mention her own 3 year-old and 1 year-old. It’s not a normal something for a therapist to do.
Into our home she came, just the same, with a smile, a plan and a tender persistence that could quietly rival an olympian. Tears are falling as I remember these moments.
We were most certainly a team, the three of us. We all had goals and targets. Diligently she would craft our weekly plan, making small tweaks here and there, adjusting in accordance to progress or lack there of. She always erred on the side of optimism. I’m not sure I recognized it as being overly optimistic at the time as I don’t think I was functioning in reality. I kept forging ahead with hope, the earthly kind, full of healing, progress and development.
One day, in late spring, we were sitting together on the floor with Bryer lying on the ottoman between us checking-in on progress and discussing the next few months.
“Do you think we can get him sitting up by his 1st birthday?” I asked. I had been daydreaming about the possibility of one of those iconic 1st birthday pictures.
She looked up at me and smiled, “We can certainly write that down as a goal!”
That’s all I needed to hear. “Ok, then. How can we make that happen!?”
He was 7 months with no head control and not rolling over. I now realize that she knew it was not a realistic goal, but she didn’t say so. We were going to work towards it anyway. B and I worked everyone of her plans tirelessly without fail, unless he was admitted to the hospital. It was to no avail.
Justin and I, our family, and Kim were doing everything in our power. I think for anyone, but maybe even more so for someone who thrives on hard work and achievement (me…and Kim), it was the most spirit crushing, disheartening, pitiful, maddening and grievous of times. Little did we know that his brain had begun its deterioration and there was absolutely nothing we could have done. Soon the onslaught of Infantile Spasms would come like a wrecking ball in August and he’d be gone by September. There would be no iconic 1st birthday pictures to be taken on October 17, 2013.
Let’s fast forward to the early summer of 2017.
Our new addition to the family, our son Arrow, was nearly 18 months. Having been diagnosed with Tuberous Sclerosis and fighting seizures for his first 13-14 months (he has his own story:), he was behind and honestly we hadn’t been told he was certain to catch-up. He was noticeably delayed and it was concerning. We had him in OT, PT and Speech therapies. At his 12 month check with the clinic in Cinci, his preferred method of transportation was rolling. He wasn’t crawling, let alone walking. He also didn’t have any words. We were scheduled for our next big developmental evaluation at 18 months and I had set some big goals to reach by then. I so badly wanted to take him walking into that next appointment.
For any of you who have had slow walkers or developmentally delayed babies, you are familiar with the milestone markers and timelines. For walking, they give a normal range to be something like 9-18 months. I was holding onto hope that Arrow could slide in right at the very end of the normal range for walking. Perhaps he would then be labeled as “caught up” or on the right track and maybe that would give us a better idea of his overall prognosis. MAYBE, the doctor would look at us and say, “Looks like Arrow is going to be one of the more mildly affected ones…” or something like that.
We upped his Physical Therapy and even started a new and additional method of therapy. I worked and worked with him, but he just seemed stuck. I was discouraged. It just so happened Kim and her family came over for pizza one night in late May. We discussed his lack of progress and my goal of him walking, now with MY 2 week “deadline" closing in. Mind you, she wasn’t his therapist.
In true Kim form, her wheels started turning. Pretty soon she had come up with a plan to come evaluate him and then the week of our church’s VBS, in which her kids participate as well, she’d do 5 straight days of intensive therapy each evening. It was a brilliant idea.
For 5 straight nights, we met at church, got our kids dropped off to VBS and then stole away to the empty nursery for a 30 minute session. She took a different approach from what our other therapist were trying. She wanted to get him to stand-up in the middle of the floor instead of relying on pulling-up. If we can get him to do that, the walking will come, she said.
You guys. By the the third day, after jerry-rigging a supportive harness out of ace bandages and giving us home-work to do, he was wobbly, but getting up to stand. It was magical. His proud smile, our whoops and cheering him on. The amount of progress he had made in just three days was astonishing.
On the 5th and final day we arrived at VBS and met Kim. As he was crawling around, she went up from behind and prompted him with an “Up Up! Arrow, up up!” and he got up. Not only did he get up, he walked over to Justin who was standing about 20 steps away.
And then I crumpled into a complete mess right there in the middle of the thoroughfare. I excused myself to the bathroom and tried my best to reel it in.
Watching Kim, watch Arrow get up and walk is is difficult to describe. The look of victory, of love and the pureness of pride on her face as she held both hands towards heaven and cheered. I was flooded with memories of how HARD we worked with and FOR Bryer and I could see that she was too. All the brain racking and tweaked approaches. Letting me put “sitting up by 1st birthday” on our sheet as a goal. Celebrating the tiniest of progressions, that were really not progress at all. And then finally saying goodbye hours before he left us. She held him, ran her fingers through his hair and kissed him goodbye.
The B, all the work she had poured in yielded him no physical gains. I can imagine she was left feeling as helpless as I did.
He blessed us with a bit of redemption that 5th day of VBS 2017 and boy was it sweet...and beautiful and sacred...and healing.
Arrow walked into that Cincinnati appointment the following week (June 15, 2017) at 18 months 1 week old. As my son, Sander, would say...
Bound for Glory September 12 2017, 0 Comments
-to walk or run with leaping strides
-sure it will happen because it is a natural consequence of something that is already known or exists
-resplendent beauty or magnificence
-a state of great splendor, magnificence or prosperity
-a state of absolute happiness, gratification, contentment
-the splendor and bliss of heaven
This is probably the simplest blog I’ll ever write because there really isn’t more I can say other than, LISTEN TO THIS SONG!!
I first heard it on a training run the summer after Bryer went to heaven, and I so wished I had heard it before he left! I would have played this with praise on my lips at his service. It makes me so happy for him and fills my heart with such hope of what’s to come in my life.
We are all bound for something. Shouldn’t it be glory!?!
This world is not my home
I'm here for a moment
It's all I've ever known
But this world is not my home
The fight is not my own
These burdens aren't my future
The empty tomb has shown
I am bound for glory
I am free because I'm bound
I am bound for heavens gate
Where my feet will stand on holy ground
I am bound for glory
The saving work is done
Death is not my ending
My God has overcome
I am bound for glory
All my pain, hurt and shame
Gone when Jesus calls my name
Endless joy endless praise
All when Jesus calls my name
The Voice of Truth September 11 2017, 2 Comments
Apologies for the heavier posts, but this is a heavier time of year for me, so tis the season.
Time-hop reminded me, although I had already remembered, about the day 2 years ago that we were told our baby had 2 heart tumors.
I had gotten a lovely sonogram picture of baby’s (Arrow’s) face. I remember just staring at it in disbelief. I truly could not believe what we had just been told.
And as I unraveled, alone in my car in St. Ann’s parking lot, the lies began to come. Of course, in my broken state I didn’t recognize them as such or call their bluff. I was like a wounded animal in an open field. Easy prey.
You can’t do this.
You aren’t strong enough.
You and Justin aren’t strong enough.
You don’t deserve this.
Where is God?
This baby will suffer.
Your family will suffer.
And on and on.
As I drove from the parking lot to my mom’s, a song came on the radio. It was a rather old song that doesn’t play over and over again like some tend to do.
“The Voice of Truth.”
I listened. I even kept singing the chorus well after it was over. Over and over and over. I shared the lyrics on FB as I battled silently.
Wouldn’t you know some 4 hours later when I got back into the car to go home, it was the first song playing when I turned the key? I love it when God does that. Knowing how the rest of the story plays out and how much MORE heart break would be in the coming weeks (the finding of numerous brain tumors at 29 weeks), I know He was trying to get my attention and prepare my heart.
“Carey, out of all the voices calling out to you, make the choice to keep your eyes on me. Seek the voice of truth.”
And man, I tried. It’s a hard discipline in the midst of a storm. Somedays were better than others. Several days in a row were the worst of my life. But here’s the thing. The voice of truth, is stronger. If you just listen for it.
It came to me by way of:
My childhood pastor
A Christian counselor
A Christian mentor/author
We ALL get fed so many lies in our lives here on earth don’t we? We get attacked from every direction. I’m not good enough. I will never be happy. God has forgotten me. I deserve this. I am just not successful. I am not smart. No body loves me. It’s my fault. I can’t do it.
When a storm comes, the lies only intensify. So, I want to encourage you. Seek the voice of truth.
Stop. Be still.
Set the fear, the anger, the worry and the loneliness aside long enough to listen for it. Allow people to speak truth into your heart. There are so many who love you, most especially the God who created you.
This is a picture of Arrow today after I rocked him asleep for a nap.
The truth is, I love him more than words can begin to capture. The truth is, he is JOY. The truth is, he is happy. The truth is, he IS the blessing that we prayed for all along.
Warning: There is Joy Ahead...and some Pizza January 20 2017, 1 Comment
I crawled in bed to go to sleep, but I can’t. It’s not because of worry either. It’s because I have so much joy pinned up inside, I must let it escape through my fingertips. So here I am with an open laptop, a blank page and a smile.
First, let me caveat this by saying, Remy and Sander bring me equal parts joy. I just don’t write about them as much here because it would feel more like bragging or something rather than sharing? BUT don’t think for a min they don’t make me sentimentally or bust-a-gut teary multiple times a week They have my heart just as much as Bryer and Arrow. That probably should go without saying, but just in case, I wanted to say it anyway:)
So much good stuff went on tonight that I want to document. The first good thing was Justin asked Remy and Sander if they wanted to go with him to worship team practice. They accepted and soon after dinner the three of them scooted out the door along with 2 of 3 bedtimes (fist bump). That left me with a messy baby who with Dyson like force was inhaling the frozen pizza dinner as if it was his only meal of the day. Let’s pick it up from there.
I sprinkle an array of cut up fruit to suffice until more pizza cools. He sees me testing a bite and his squeal went up 3 decibels and his feet start kicking like an excited dog’s tail. I dump the small pizza bites amongst the picked over blueberries and raspberries. Fist over fist it goes in.
I watch him pick it up, shove it in and chew. Never does he accidentally pick up a blueberry, leftover grape or raspberry. He only has eyes for the pizza. Pretty soon all the pizza bites are gone and his feet kick and the squealing starts up again. He looks around. He finds a small lone bite stuck to the side of his chair. With precision he grabs it and victoriously lands it in his mouth. He looks at me happy and proud. “Da DaNa DAAA ahhhhhh!” He finds another stuck to his bib. In it goes. He is so pleased.
And I am more than pleased. Besides the fact that he is feeding himself, chewing and swallowing, my mind notes that he is showing preference. He is communicating he wants more. He is being demanding. He is grabbing for his drink. Thank you, Lord.
Time for a bath. The water turns on and he’s squealing, jumping out of his skin to get in the tub. He’s curious about the water as it falls from the faucet and tries to grab it as it slips through his fingers. There are giggles when I squirt him with the toys. He turns in circles on his bottom following the tug boat that I swirl around his back. The best part…. he throws a fit when I lift him from the water and into his towel jack-knifing his body because he wants more bath time. Thank you, Jesus.
Diapers and PJ’s are next. He easily squirms away from my lotion slathered clutch. Bare tush in the air, he crawls away to pull up on the chair. He looks over his shoulder and smiles. I wrestle him into his PJ’s all the while he is playing peek-a-boo with his green dino towel. "Where’s Arrow? Oh there he is!" Belly laughs follow. To most, it’s a seemingly elementary baby game. But to me, it’s way more. Praise you, Lord.
After two failed attempts at putting him down to sleep, I go in for the third time. I lift him from his crib and try settling him in a cradle hold while patting and singing. It’s not working. He whines and pushes himself up and away, twisting himself outward. I sit in the chair trying a different position. He’s not having that either. There we wrestle for a few more minutes in the dimness of the night light. Suddenly, he is quiet and begins babbling as he reaches across my body to the side table and grabs a book. Happily he babbles something and pats the book. “Oh you want to read a ba-ba-ba book??! Ok!” I pull the small lamp cord and we begin turning pages.
Next, he wants down, so I just give in entirely and decide to throw bedtime to the wind. Let’s play, bud. For the next 30 minutes or so we play. Hard. He is louder than loud. We wrestle. He “gets” me. I “get” him. I see glimpses of a baby Sander reaching for the spotlight. I match his squeals and delight, then I quiet and play “dead”. He matches my quiet and then suddenly screams in my face and I react. He belly laughs. He dives into my neck for hugs and plants wet kisses on my check over and over. In the excitement, he starts to bite my arm. I react quickly, sternly saying “Noo. No bite.” He has the tendency to bite me while nursing and I have said this to him often. But this time, he stops immediately, looks at me and his smile falls away into a pouted lip. He begins to cry. He feels scolded for the very first time ever. He puts his forehead down on my shoulder, then lifts up again looking at me in the eyes. His lip pouts again. I have hurt his feelings. Thank you for this progress, Jesus.
Finally, the eye rubs begin and I know it’s time to try bedtime again. He’s pats my face and grabs my bottom lip as he drifts off to sleep within 5 minutes.
I stand there next to his crib before I lay him down and say a version of the prayer I say over him every night.
"Lord, thank you for this sweet boy. Bless him with deep, sound, restorative sleep tonight. Keep your hand on his little brain holding back the seizures to allow growth and development to flourish. Continue to make new pathways and re-work around the tubers. Make new connections. Thank you. Thank you! Thank you for the joy of this evening! You’ve encouraged and continue to settle my heart. For this answered prayer, I am so grateful. I am humbled by the blessing that is Arrow."
I sit on the couch for a few quiet minutes before the others come home. My eyes are lifted to a leftover Christmas decoration that sits in our built-in shelves. In red block letters it spells out J-O-Y. I smile. Yes. I notice the figure that sits on top, an Angel that embraces a baby in the same way I embraced Bryer after he left us for heaven. It is a treasured gift. I remember that moment.
And I wonder...would I have taken as much delight and experienced the depth of joy that I just had with Arrow if not for Bryer's life? If not for this affliction of Tuberous Sclerosis on Arrow’s life? I’d like to think I would, but I can’t be certain.
So, I will soak up the joy of today and I will remember when the trials of tomorrow come, there is also wonderful joy ahead. 1 Peter 1:6
Be Still My Sticky Soul January 13 2017, 0 Comments
This wasn’t on my list to do today. Sit down and write a blog post? There’s a first time for everything and today is that day.
I dropped Arrow off to my Aunt Donna to be there for the WHOLE day. He was there for 4 hours on Monday and she managed to get 5.5 oz of milk down him from a BOTTLE. Let me say that again, “Arrow drank 5.5 oz from a bottle.” In other words, he drank from a vehicle other than me. "Homie say what?!?” was my response when Donna told me. So we are going to try Fridays with Donna and this is my first one. It will collectively be the longest I have been away from him in 13 months and 5 days, not counting the 37 weeks in my uterus. So, to say I have a list of things to do today is an understatement. Write a blog post was not on that list. But God, I guess he had other plans (insert eye roll).
It’s probably no coincidence that when I returned home from dropping Arrow off and had just cleaned the kitchen and was ready to get to that list I mentioned, I opened the fridge door out and out falls a brand new jug of 100% maple syrup, breaking off the top and dumping ALL over the floor.
(this is just a portion of the mess)
Sigh. What are you gonna do, let it sit there? Onto my hands and knees I went with wet paper towel after wet paper towel sopping it up and throwing it away. As I cleaned, I noticed the new song that came on over Alexa. “Be Still My Soul” by Kari Jobe. I listened as I wiped up the sticky robber of my time, then sat back on my heels and listened closer. "Be Still My Soul”, although another version, was sang at Bryer’s memorial service.
Be still, my soul, thy God doth undertake.
To guide the future as He has the past.
Thy hope, thy confidence, let nothing shake...
In You I rest, In You I found my hope. In You I trust, You never let me go.
I place my life within Your hands alone.
Be still, my soul.
And the thing is, my soul totally needed stilling.
Allow me to explain. The past couple of weeks with Arrow have been so wonderful. We are seeing some subtle but big (is that an oxymoron?) progress in him. Things that have been so very encouraging to this mama’s heart. Gains, development, changes. Sleep!!! Yesterday, I was validated during his therapy session when the therapist said his developmental assessment from just a month ago is already out of date and she was so impressed and pleased with his progress. When she left and I closed our door, it was almost like one of those sitcoms when a girl’s crush leaves and she sinks back into the door with a goofy grin because she can’t contain her giddy-ness. Yeah, kind of like that. All you special needs mamas out there, might know the feeling I am trying to convey. So, like giddy, googly-eyed heart palpitations with a side of CHA-CHING were my feels yesterday evening. Nice, right?!?! Praise be.
The kids were in bed, Justin was at worship team practice and I sat with my Nutella and pretzels at the dining room table. Ah. Peace. Quiet. Nutella. Yes. I opened up the TS Mommies Facebook Group as I typically do. It’s a huge source of encouragement, support and just down right education for me. These warrior mamas and their warrior babes. I learn so much from them. But then I read this post and all the comments….each one like a jab trying to dismount me from my mountain top therapy session from earlier in the day.
And I wanted to dive into the giant jar of Nutella never to return.
Yea, the reality is this. My Arrow can’t be labeled typical in development yet, but I am believing he can get there eventually. However, he may never or he may only to be unraveled and spiraled downward again by this disease.
That’s not a “be still my soul” thought. At all. That’s a eat as much Nutella and pretzels as you can while worrying about what the future may hold thought. At least it was last night.
But today, God reminded me as I cleaned up a super sticky and irritating mess of syrup, that He will guide the future has He has the past.
Do not let your confidence or hope be shaken, Carey. Rest in me. Enjoy THIS day. I will never let you go. Give me your life. Give me Arrow’s life. Trust me. I’ve got this. Just be still.
Thank you, Lord for the reminder. My soul is stilled. However, the rest of me needs to get a move on. My time to get anything done is ticking:)
2016 in Review/Arrow update December 31 2016, 9 Comments
It’s been awhile! I’ve tried to suffice with quick FB posts and quips to keep those who care and pray abreast, but, this is long over due. Besides, this nicely replaces the Christmas cards I didn’t get executed for the 2nd year in a row! So, without further delay, here’s a little Happy New Year/2016 update.
Justin and I celebrated our 10th anniversary in February! In June we moved out to the country, my old stomping grounds, and we have loved being near so much family. When I say near, I mean next door, behind and in front of! We both ran the Columbus 1/2 marathon this October representing Bryer’s Song which is always very special. Justin enjoys an active role on our church’s worship team playing the drums - we love Westerville Christian Church. He continues to work for Veeam Software, and I stay home with the kiddos while running my Rodan + Fields skincare business.
Remy is 8 and in the 2nd grade at Hylen Souders Elementary. She’s growing like a weed and is one of the tallest in her class:) She loves to read and is almost through the Harry Potter series, but she also has a big interest in history bringing home books from the library on things like The War of 1812 and 9/11. She loves watching the Food Network and someday would love to be on Cupcake Wars:) She loves to play; whether swimming with her cousins, softball, soccer or now she’s enjoying basketball season. She is a lot sweet and a little/a lot sassy. She doesn’t care what she wears or how her hair is fixed, which sometimes drives me crazy, but I mostly dig it. She’s such a pretty girl, but doesn’t know it. I hope it stays that way awhile. She swings between surprising me with maturity beyond her years to quickly reminding me she is still a little girl. I hit the jackpot with this one. So blessed to call her my daughter.
Sander is 6 and in Kindergarten at All The Children Academy. He’s a healthy, happy, rambunctious, ornery, funny little boy. He played soccer and football this year, but is sitting out basketball this season because he said, “I’ve lost focus.” HA. He LOVES movies, snacks and his cousins (probably in that order:) But, mostly he loves to bring a smile to people’s face and laughter from their bellies. He looks forward to getting the hang of reading and is excited for his first season of baseball this coming spring! He’s very tender-hearted. He thanked Arrow for "staying alive for so long” on his first birthday because “I love you soo much.” Sometimes we wonder where he came from, but so thankful he found his way to us!
This is where I’d write about Bryer if he were with us. Bryer would have been 4 this year. Recently, I was in an elevator with a little boy and his mom. I asked him how old he was. “Four.” I thought so. My eyes stung. This doesn’t always happen when I see a boy or girl his age. Maybe it was because I was standing back in observation of what I had desired for Bryer and I? Bottom line, he’s missed and never forgotten. We continue to raise money for Nationwide Children’s Hospital in his memory and were again the #1 fundraising team for Nationwide Children’s Columbus Marathon this year! Incredibly thankful for the continued support. We were also able to help encourage several families during the year through our Bryer’s Song ministry. We look forward to doing the same in 2017!
Arrow Brye recently turned one! There is a lot to say about this little guy. More than likely, if you are reading this, you also read my blog post last December sharing news about "Baby Largent” and our prenatal Tuberous Sclerosis diagnosis. The last 12 weeks of his pregnancy my emotions ran the gamut, but on December 8th, 2015 when he was put in my arms, it was on. My love for him and my will to give anything (but up) was ON. So, here we are one year into this journey of a lifetime. What a year it’s been!
I’ll attempt to provide some clarity to a disease that is sometimes as clear as mud. Thus far, I've avoided getting too much into the details of Arrow (since his birth) because it is extremely up and down and just complex. I learn something new nearly everyday. In fact, during our last trip to Cincy, our doctor said, “We will never be able to give you a straight answer and you will always be looking over your shoulder.” Comforting isn’t it? With that in mind, here’s my best shot.
When Arrow was conceived a gene called tuberin, located on chromosome 16, spontaneously mutated. This gene, responsible for regulating cell growth, became dysfunctional. Tuberin is expressed in many different organs in the body, so tumors (unregulated cell growth) developed in utero and can/will develop throughout his life. He was born with tumors in his brain, heart & on his skin.
He was born with tubers located throughout the cortex (outer layer of brain) that can disrupt the “wiring” of his brain and cause seizures or epilepsy. Some are larger and some are small. He also has tumors (which do have a tendency to grow) within the cerebral ventricles (inner spaces in the brain which hold cerebrospinal fluid). If these grow, they can cause increased intracranial pressure and could be fatal. He will have MRIs throughout his life to monitor these tumors and I am aware of and on the lookout for symptoms that might indicate a problem with these.
He has 2 heart tumors that thankfully are small and so are not impeding the flow of blood. His heart is functioning well. These tumors for some unknown reason, tend to decrease in size throughout life.
Because of an abnormal EEG, he began a medication at 8 days old to try to prevent the onset of seizures which was very successful for the first several months. We made many visits to Cincinnati’s TSC clinic for EEG’s and consults with their team to manage his care. Arrow was never a great sleeper from the start, but things got drastically worse in July. At the end of August, we finally figured out he was having subclinical seizures (meaning there are no clinical symptoms you could see with your eyes) during the night. This was causing him to get up pretty much every hour or less. At 8 months old, he was getting about 6-7 hours of total sleep in a 24 hour period. He was exhausted, but seizures wouldn’t allow him rest. Talk about hard to watch. We tried and failed several drugs. During these months, his development stalled, if not regressed, in some areas. Finally, we found a combination of drugs that seemed to help in October, but we still weren’t completely sure if his seizures were controlled at night (since you can’t see if he is having them). Although his sleep had improved, it was still not normal or healthy, so we wondered if seizures were still the culprit. Or bad habits? Or teething? Ugh. Not easy to dissect or determine.
This brings us to our most recent trip to Cincinnati for his annual brain and abdomen MRI along with another 24hr EEG. We got good news! No seizure activity and no epileptic discharges (pre-seizure activity) were found! Wonderful, indeed. His MRI showed that the tumors in the ventricles remained unchanged and are stable. Also, a big win! With this information, we felt more confident moving forward with some sleep training techniques and his sleep has improved. Praise the Lord! This also meant there was no need to start an additional medication that had the side effects of mouth sores (canker sores) and acts as an immune suppressant (smack in the middle of cold and flu season, no thank you). I had been anxious about the possibility for weeks. This was an answered prayer. Thank you Lord!
His developmental assessment showed he is certainly delayed. This didn’t come as a surprise to me. I could have told the therapist exactly what she would not see from him. Our doctor said, “the jury is still out” on whether he will catch up completely now that the seizures are under control. It’s wait and see. Remember they said they can never give us a straight answer and we will always be looking over our shoulder? Sigh. But one verdict is for certain, WE LOVE HIM TO PIECES! We certainly work with him to help his progression, but we do not CHASE it so much that we miss what he IS. We EMBRACE where he is, because he is marvelous. There is so much that he is able to do. He clapped for the first time 2 weeks ago (and I cried). Besides, he is ALWAYS grinning, and it’s just about the best thing ever.
Arrow is one of those kiddos that will need continued prayer. I hope some of you reading this will just scoop him up into your heart and onto your prayer list.
Here are some of the prayer requests:
-Take this completely from him, Lord. Complete healing.
-Continued seizure control. This will allow for his best rest at night and best opportunity for growth and cognitive development.
-The tumors in ventricles would not grow.
-Development in communication and comprehension. This is the area he is most delayed.
-He would be blessed with a sweet, tender and kind heart towards others. I so desire for him to be able to express and receive love.
-God would give us a keen sense regarding his needs. That with discernment, we would be helpful in formulating his care plan and what therapies would be best alongside his doctors.
-His life and this journey would always point to Jesus!
If you read this until the end, thank you!! I wholeheartedly believe in the power of prayer and I’d be so humbled, honored and grateful to know you are praying for our baby in 2017.
Much love and Blessings in this New Year,
Soar September 17 2016, 0 Comments
Soar, Run, Walk.
Isaiah 40:31 was the scripture I leaned on most through out Bryer's life. See here.
For those who hope in the The Lord will renew their strength.
They will SOAR on wings like eagles.
They will RUN and not grow weary.
They will WALK and not be faint.
I originally had designed this year's shirt in the reverse order of Walk, Run, Soar. I just wanted to tweak the verse. I like the neatness and predictability of progression. So, it was mocked up like that for weeks.
Then one morning as I was getting ready and feeling a little anxious about our littlest guy, Arrow, and what he was and wasn't doing in regards to milestones at that point in time... God reminded me of a couple things. For starters, I don't need to be messin' with the Word! Secondly, when is life ever neat and predictable? Rarely do things progress according to MY plans. I know that all too well. My reverse order of Walk, Run, Soar could imply you need to walk before you run and run before you SOAR, and that's the exact opposite of how God works. God's love isn't conditional upon what we can or can't do.
We just need to trust Him. Our hope should rest in Him. For when we do, He renews our strength and we SOAR.
Arrow's name / Cincy update December 27 2015, 5 Comments
(Keep reading for an update at the end:)
How in the world did we land on that name many have asked. Well, let me tell you:) This might not be my best explanation or writing as I am very sleep deprived and hopped up on sugar cookies and caffeine. I am also working against Arrow's clock! So ready, set, write!
It's no secret, the more kids you have the harder it is to come up with names. I was about 13 weeks pregnant or so when I started to really think about "the list". I am the brainstormer and thinker when naming our kids is concerned. Justin is the reactor and likes to veto many of my ideas without offering any other suggestions in return. This has been the pattern for each kid;)
So, I began my brainstorming. I wanted to have something that was tied to the family. I was thinking of boy's names this particular day and wondering how I could incorporate my brothers, especially Aaron, since I had used Ryan's middle name for Bryer (Michael). "Arrow" was a nickname we had for Aaron growing up and I remember my mom writing it on many of his birthday cards among other things. I wrote it down on my "list" as it fit two criteria 1) Unique, but not bizarre. 2) Meaningful. As with any good brainstorming session, I kept on moving and churning out ideas and didn't think too much more about it.
Later, I shared my new list with Justin and highlighted Arrow seeking his opinion.
"Um, no thank you." He said flatly.
If you recall, June 2015 was a very rainy month in central Ohio. We must have seen 10 rainbows, which was super fun considering Remy's love for them and the significance they hold in our faith, but also how they tie back to Bryer. See (here) for one such example. It was sometime during this month I read the kids a story from their Jesus Storybook Bible as we typically did before bed, and they surprisingly agreed on Noah and the Ark.
As I read it aloud that night, this children's book version, it touched me differently than it every had before.
I had been having some anxiety and varying emotions about the pregnancy in general as most mama's do in the beginning just hoping and praying everything would be ok and healthy. The words of the story that night seemed to lift off the page in a new way and brought me a fresh layer of comfort. I felt assured we wouldn't have another storm like Bryer. Not only that, but I was left completely struck by the phrasing and illustration.
Here are some excerpts via photo. Give it a read, it will help things make sense:)
Like a mighty warrior, God hung His war bow in the sky promising never to turn his wrath on the world in such a way again, but instead His bow pointed to the heart of heaven.
An arrow pointed to Jesus.
It just all fit together so perfectly. His bow hung upside down where the storm meets the sun, naturally meaning the arrow in His bow points to the heart of heaven. Not only do I love the thought of Arrow's life pointing to Jesus, but peel it back a little deeper and it's a beautiful illustration of the foundation of our Faith…our Salvation…our Hope. God's wrath would be satisfied not toward us, but through the sacrifice of His one and only son.
I shared this with Justin the next day and how it moved me so. I told him this baby could be our Arrow in the rainbow...pointing to Jesus and reminding us of our eternal hope. He was listening.
A couple weeks later, my Mom calls me. She was nervously excited to tell me about the baby's quilt material she had found and already purchased. That's the part she was nervous about..she had already bought it and it was on clearance, thus un-returnable. Mom makes a quilt for each of her grandchildren. For some reason the night before she couldn't sleep and was up at 3am looking at fabric on her phone. She found a pattern and material she loved and was moved to make the purchase. However, she was unsure if I'd be as in love with it. I had not shared with her my thoughts on the name Arrow or anything surrounding the name.
She hem-hawed around…"Well, I really, really like it…but it's different…and well I just don't know if you will feel the same.. "
"Mom, just tell me what it is!"
"Well, the pattern consists of arrows….and the binding is actually rainbow colors…and there are some flecks of rainbow colors on the ends of the arrows."
"Seriously?" I questioned.
"Yes, seriously. I think that could work for either gender don't you? I mean, I know how significant rainbows are to you…but wasn't sure how you'd feel about arrows."
"I think it will be perfect, Mom." I said smiling through the phone.
I hung up. Wow. That was crazy. God seemed to pretty much be hitting me over the head with our name.
I shared this with Justin. He was pretty much speechless.
Time went on and these little confirmations and signs kept popping up. Arrows and rainbows were prevalent.
An Easter rainbow:
April 5, 2015 was Easter Sunday which ended up being Arrow's day of conception (we know this due to some fertility issues). I was washing the dishes and when I looked up there was a rainbow across the face of "Bryer" or rather the little fabric stuffed Bryer that sits above the sink. I posted this pic to FB that day.
March 4 Facebook post - I posted this a month before Arrow was conceived and the name wasn't even on my radar. Seems prophetic no?
My friend drops off a book for encouragement with a card in November. My name is underlined by an Arrow.
Noah's Ark kept popping up left and right. Two friends randomly gave me Noah's Ark books mid-summer 2015. My best friend from NC sent the Noah's Ark Veggie Tales video in the mail in October.
October 11, 2015, 2 days after they had found spots on the baby's brain and if you've read my blog, I was not in a good place at that point. We were at Panera for a sign making party in support of the marathon. I was ordering my food and noticed the cashier had a large arrow tattoo on her forearm that pointed up. Not a huge deal as people do have arrow tattoos. However, when I turned around with my food to head to my seat, there was a rainbow thrown across the floor coming from the window.
Our Bryer Song Hope shirts includes an arrow pointing up towards heaven, which happened to NOT be my novel idea, but my sister-in-law Kari's.
One evening in November I was looking on Etsy, while laying inverted on our ironing board trying to get baby to flip, and randomly saw the scripture Isaiah 49:1-2 on a print.
"Before I was born the LORD called me; from my mother's womb he has spoken my name. He made my words like a sharp sword; He hid me in the shadow of His hand. He made me like a sharpened arrow; He hid me in His quiver."
ALL of that to say....It was decided that the baby's name, boy or girl would be Arrow. Arrow Leigh for a girl and Arrow Brye for a boy.
You can imagine how confused I was when the rug was pulled out from beneath us with Arrow's TS diagnosis and all that ensued. I didn't understand. I had felt so reassured that everything would be ok and then the bottom completely dropped out…or so I thought.
As we have moved through the beginning of this journey, I am starting to see how He actually has given us provision and a harbor of safety in this storm. "But in the middle of the huge storm, in the crashing waves, in the thunder and lighting - through it all - God was with them." Perhaps this is part of the message I was supposed to be receiving all along. Not that there wouldn't be another storm, but that we would be held in safety.
Tuberous Sclerosis would not even be on our radar at this point in Arrow's life had they not found those rhabdomyomas in his heart or spots on his brain in utero. TS typically isn't diagnosed so early, but rather once a child starts displaying major symptoms which can be quite sometime after birth. We would have had Arrow and not known a thing was wrong with him. He is doing everything he is supposed to be doing at this point. We wouldn't not have been on alert.
From 16 weeks pregnant on, I was going to Maternal Fetal Medicine regularly for cervix checks as it seemed mine was shortening, which can be problematic and cause pre-mature delivery. It caused me to get ultrasounds every 2 weeks. Then suddenly it just resolved itself. Jumping one visit from a measurement of 2.3 to 4 (which is considered completely normal). The doctor even noted how strange that was and how typically they don't see the measurement head in THAT direction but rather the opposite direction. It was never a concern again. BUT this all caused me to keep going for ultrasounds which allowed them to find the heart tumors and spots on the brain.
Because we had this advanced knowledge we were able to establish ourselves with the BEST doctor prior to delivery and devise a plan. Because we knew this ahead of time, I was on alert and when I noticed some very, very subtle suspicious movements the day after we got discharged from Nationwide, I called Cincy and got our appointment moved up a week sooner.
This leads me to a short Cincy update as many have been asking.
We took Arrow down at 8 days old as I had seen some suspicious movements. To make a long story short, he had an EEG that morning followed by a TS clinic visit with Dr. Franz. Dr. Franz read the EEG and said we were right to bring him in when we did. He was seeing some abnormal activity on the EEG…almost like pre-seizure activity. It was few and far between, but if left alone it would certainly develop into full seizures. He said his brain is not damaged and he is still very optimistic for his development because we are catching this so early and able to be so proactive. The sooner you treat seizures the better because they've not had a chance to lay down such deep patterns that after awhile are harder to get under control. He started him on a medication that is supposed to shut down this activity with the goal of normalizing his EEG.
We started the medicine 2 days later after receiving it in the mail. There was some dosing issues in the beginning, but we figured that out. We haven't seen anything else suspicious. We are to schedule a follow up EEG within 2 weeks and then return to Cincy on January 13th for a brain MRI and another clinic visit with Dr. Franz.
Can you see God's provision in all of that?? I am so thankful. So very thankful. We are in the very beginning of managing this disease, but I can honestly say I am living more so in daily praise than daily fear of the future. We are required to rely daily on God, there is just no other way around it. I count that as a gift. What we thought might be the worst thing is actually turning out to be the best thing. Arrow, we love you so much!
Here are the prayer requests:
- A complete shut down of seizure activity and a normal follow-up EEG
- Better than expected news from the brain MRI and his safety during the scan January 13th. He will be sedated and intubated which is a big deal for a little guy.
- His continued growth and development and that God would place his hand of protection over his developing brain and allow for him to thrive.
Lastly, I want to share a little praise that totally made my Christmas. Arrow's first visit to the pediatrician at 10 days old had him weighing 7# which was still not up to his 7#2oz birth weight. Dr. Doherty wanted him to be gaining 1 oz a day and he wasn't up to that just yet. So, he scheduled him for a follow-up weight check on Christmas Eve morning. The goal was 1 oz a day and I'm not going to lie, I was feeling a bit stressed about this.
Well, Arrow gained 13 oz in 6 days! I almost cried right there in the office. I guess you'd have to understand the toil, discouragement and failure I felt with Bryer and his inability to gain weight and grow. We'd be thrilled with 15 grams of weight gain a day, but often times found Bryer losing weight instead. To see that Arrow was gaining more than 2 ounces a day and thriving with breastfeeding, something Bryer could never quite do, made me ONE HAPPY MAMA! Thank you, Lord. He continues to be a little piggy and feels heavier each time I lift him from his crib:)
Speaking of feeding that little pig, he is screeching for me! So, that's all for now. Thank you for all the prayers and concern over our new little Arrow. We urge you to keep the prayers coming!
Baby Largent News December 02 2015, 11 Comments
Friends, Bryer's Song shirts donned a message of Victory this year. Well, the fact that I am writing this blog is a small to medium-ish victory as far as I am concerned. See, I spent over 4 hours one night pouring out my heart, only to open it up the next afternoon to edit, finish and post it. I would finally release it. But, it WAS NOT THERE. Not one word of it.
This was hard enough to write the first time. Believe it or not, I don't like writing these. I am doing it out of obedience and in this case somewhat necessity, not because I love to be an open book and spot-light my feelings and emotions.
After I fumed, shed some tears and told Justin that he needed to write the blasted blog, I realized if I didn't open back up the laptop and try again, Satan would win. And honestly, I am sick of him trying to claim victories in my life and in this world. I despise him. Lord, Jesus, come!!
So, step aside, Satan. Here I go again.
I sit here here staring at this screen wondering where to start, especially when I have yet to really finish Bryer's story. I guess it makes sense to just begin where I left off with my last entry…
"I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world." John 16:33
As I think on this, CNN is on in the background reporting the attacks in Paris.
Unbelievable. Or is it? Oh this world.
Faith-filled or not, kind-hearted or not, deserving or not, we are not exempt from hardships, deep heartaches, seemingly insurmountable loss and devastation, bottomless sorrow, suffering or the missions of evil. This world has been warped with sin and it infiltrates our lives in so many different ways and forms…too many to count, list or even fathom. In fact, the longer I live, the less comfortable I feel here. I long for home like never before.
I have long since removed my rose colored glasses and traded them for eternal ones. But even still, sometimes those get mucked-up, dirty or foggy by what this life throws at me and it nearly obstructs my eternal view. Instead, I see only the splatters of fear, pain and suffering. I become frozen and cannot take another step because I cannot see past the here and now.
Ever found yourself in a similar place?
Thank goodness for family, friends and the church body who have come along side to guide me, even if just for a small step forward, or have literally cleared the muck from my lenses with cloths of God's truth and soapy buckets of prayer when I cannot seek the cleansing for myself.
These trials and sorrows that Jesus talks about, they keep us desperate for Him. They cause us to retrain our eyes on the eternal and hold very loosely to our plans and the things of this world. The ability to hold loosely to this world is a gift, as one wise mentor reminded me, because putting much if any stock in our vaporess existence is futile. It will disappoint every time. It is flawed.
Instead, we must keep our eyes locked on to the one who is flawless...the only one able to redeem and "overcome the world". When we allow Him to take residence in our heart and soul, we can overcome too. I so eagerly anticipate the day when He swoops us to a place of perfection and peace….our true forever home where the consequences of sin are no more.
I don't mean to get preachy. In fact, I am speaking to myself mainly. Refocusing. Retraining. Arming. Pulling myself up by the boot straps, dusting myself off and straightening my eternal glasses.
I am taking heart.
Yes, I could do without a world warped by sin. I could do without disease and seizures that threaten to dismantle God's sweet creation of life within me. He not only said we would have trials and sorrows. He said we would have many. Which brings me to why I am writing this blog post.
On September 11, 2015 Justin and I's world was rocked again as we received another heaping portion.
It was the day before Bryer's 2nd anniversary in heaven. I had a follow-up appointment at Maternal Fetal Medicine (MFM) to check what they believed to be a shortening cervix. I took Sander with me because he had a doctor's appointment shortly after mine. My cervix was fine and just as every appointment and ultrasound before, "baby looked beautiful", growing big, fluid perfect and placenta healthy. We had passed genetic testing and the 20 week anatomy scan. I was just shy of 25 weeks. I had finally allowed myself to be all-in and completely excited. JOY was on the horizon and I could not wait!
But, Dr. Lang came back in and wanted another ultrasound to look at baby's heart. It was shortly after that the words Rhabdomyomas and Tuberous Sclerosis were mentioned for the first time.
Dr. Lang said it appeared there were two tumors in the heart that looked to be Rhabdomyomas. He wanted me to get a fetal echo at NCH the following week. He then followed up by saying, many times these kinds of tumors are associated with Tuberous Sclerosis. I had never heard of either. He mentioned being encouraged that they weren't seeing anything on the brain or in the kidneys at this point.
Well, that's good.
I called Justin who was near-by to come. Sander was on his knees coloring transformers on a chair in the corner of the room completely oblivious when he arrived. I was holding it together pretty well, but a few tears spilled over and the sonographer quietly placed a box of tissues on the bed. I discreetly blotted my eyes before smiling and telling Sander I'd see him in a bit! They left.
I had been emotional and weepy for the prior week or two anyway because of Bryer's anniversary that was upon us. I needed to get going before I erupted. I stepped into the sunshine and walked to my car. I got in and sat silently for a few minutes. I was in complete shock. We had been so reassured the entire pregnancy, not only through ultrasound, but by specific "God things" that had been happening. So much so that baby's name boy OR girl had been decided upon based on these occurences (which I look forward to sharing another time). I typed Tuberous Sclerosis in my phone and began reading. A familiar knot started forming in the pit of my stomach. No, no, no, no. This cannot be. I saw the words Infantile Spasms, Epilepsy, severe cognitive impairment, brain tumors, kidney tumors and on and on.
I could barely breath.
I called my mom to see if I could come out. She could tell something was wrong, but I didn't want to talk with her over the phone. I drove straight there and we sat on the couch and cried together as I told her the news. The waves of emotions came rolling.
BUT the Dr had said, there was still a 20% chance that it wasn't TS and instead just an isolated finding. These type of tumors typically regress after birth. If baby is tolerating ok now and after birth, then they really aren't an immediate concern. We still needed to check their location and have a cardiologist take a look at NCH.
Justin left for Switzerland that Sunday, September 13th, and was gone for the week, so Mom went to the Echo with me. Just being back at NCH was stirring. However, we were encouraged to hear that the location of the rhabdos were far from any valves or areas that could cause a blockage forcing early delivery which Dr. Lang had mentioned as a possible scenario. We were sobered though to see that there were in fact two tumors and the sonographer at MFM hadn't made a mistake. The cardiologist said she expected that I would go to full-term and take a baby home to hold and snuggle with the caveat that she was only speaking from a cardiology stand-point. I was to go back for another echo at 31 weeks.
Deep breath, ok. I settled into that thought and felt a bit better. Remy and Sander would have their baby home to hold and snuggle. This could be somewhat normal. I thought to myself, "Surely God is in this and wouldn't allow us back to the pit of suffering with this baby when we just were crawling out of one and into the sunshine." I felt encouraged and a bit lighter. I couldn't stomach the possibility of this news just being a "sad story" to share with friends over lunch or the sad eyes and "I'm so sorrys" that might be empty of prayer. So, I shared the news with a very select few. I asked them all to pray for the baby's brain. Anything but the brain. Please Lord, no seizures, which the very mention of completely iced me with fear. I encouraged them all to pray BOLDLY! Lord, protect this baby's brain!
Two weeks later I was back at MFM for another scan. Baby looked great. Growth was ahead of schedule. Tumors in the heart were stable and nothing showing up in the brain. All good news.
September 11th and the initial findings was more than hard to take, but within those two weeks I had gotten myself to a better place. I had allowed hope to lead me on. You know, I rose up again...shook off the shadows…unlocked the door…and let hope live once more. I had surrendered all. I had "let go my soul and trust in Him". I had prayed incessantly and SPECIFICALLY. I had pretty much withdrawn from most people, because that's what I tend to do first in crisis. I didn't really want to talk to anyone or be around anyone because everyone's natural first question was about the baby. I just wasn't ready to go there with people yet. BUT, I was still talking to God. There was a part of me, can't say it was huge, that had this excited anticipation of what God was going to do because SURELY He was going to move in a big way. I prayed boldly and I prayed non-stop. Did I say that already?
Two more weeks went by. I was just shy of 29 weeks when I went back for another MFM appointment on Friday, October 9th. Justin and Sander were both with me. It was the day of "Bryer's Song Presents The Nephews at King Ave 5". It was to be a great evening of celebration and fundraising. There was a lot to do in preparation, so I was happy when we were called back within a decent time frame. She preformed the ultrasound and everything was looking great. Again, baby was measuring big and strong, fluid perfect, placenta was healthy. She was checking the brain, the kidneys and also the tumors on the heart to make sure they were still stable. She then mentioned she might have seen something on the brain, but wanted Dr. Lang to take a look too. This was the same technician that found the rhabdos in the heart. She left to go discuss and they both came back.
Yes, they concurred they saw 2-3 spots on the brain.
Dr. Lang said this really tips the scales towards Tuberous Sclerosis Complex. I leaned back in the chair. I had nothing to say. No questions. We were told we needed a Fetal MRI at NCH the following week to get a better look. Sarah, our genetic counselor, who we had been working with from the beginning, came in and said she'd get that scheduled asap.
"Ok." I said
"Do you have any questions?" They both looked at us with such sympathy and concern in their faces. I know they hated this so much for us, but I just wanted to get out of there and away from their gaze. We had no questions, and I needed to leave.
When we got home, I told Justin I needed to walk. I went and walked around our neighborhood and cried. I remember passing a lady twice with a bouncy, jumpy, yappy, annoying dog who she obviously thought was adorable and was not concerned one bit about tightening the leash and keeping it from jumping all over me. I had my therapeutic tights on for my ever-worsening varicose veins which are about $130 a pair. I didn't need a hole ripped into them by a tiny, yapping dog. I just kind of walked through the dog head down sobbing. The next time I was about to meet her, I crossed the street and walked on the other side. She called over, "You don't have to go on the other side, she really is friendly!"
"It's ok." I mustered. Clearly, she didn't understand that my world was falling apart.
Hmm there's a phrase, "my world." The mud began to spatter and my view was becoming compromised.
I walked and my anger grew. My confusion, hurt and anxiety were building layer after layer, one on top of the other. I had no words to pray, but audibly spoke these phrases to Him.
"I don't understand!"
"Haven't you heard one of our prayers??"
"Really, of all things. The BRAIN!?"
"Where WERE you and where ARE you??"
"I can't do seizures again!"
"I can't watch my baby suffer, again!"
"I don't want to be the friend and family in crisis again!! How are we supposed to help and encourage others when we will be in survival mode once again?!? I just don't get it! I will not be free to do much of anything let alone continue our ministry."
I went back inside with my swollen eyes and runny nose and told Justin that I didn't think I could manage the event that evening. All of our friends and family…just all of the people, I would have to be out in the crowd talking to all of them. At least he could be hiding behind the drums and banging on something! All I wanted to do was crawl in bed with my sorrow and hide. I had been preparing to speak on stage that night. I told him I couldn't. I would be too emotional. He said he would do it, and I that didn't have to go. But, I couldn't not go. After all, I was one of the hosts. There was a lot to do!
And most importantly...I am Bryer's Mommy.
I caught his face in the picture packed with all the other stuff to take down. Oh Bryer. This is supposed to be all about you tonight, but it's not because in my heart, this moment, it's about your brother or sister who will be coming into this world. You are safe and sound, whole and healthy in the arms of Jesus. I miss you! But, I do not worry about you or anguish over your suffering. However, I am absolutely frozen in fear thinking of what's ahead for your sibling.
I didn't want to go, but I did.
My parents came over to help get Remy and Sander ready. They'd come for a bit and then leave with my Mom and Dad to spend the night. I couldn't stomach eating, so I declined dinner. I didn't have it in me to update my siblings or friends with the latest news, so I went without any of them knowing.
On the way to the venue, I sat silent in the back seat while my dad drove, and I text with my OB soliciting her opinion on whether an anti-anxiety medication would be appropriate and safe at this point in my pregnancy. A myriad of reasons prompted me to reach out, but the biggest of which being I had never taken anything during Bryer's life or after and now I wondered why I hadn't. I probably should have as I had many physical ramifications of the unrelenting stress of that time which took me months to recuperate from. Knowing this, I wanted to be as proactive as possible. I needed to function. I hadn't been sleeping, I'd been on edge and this was all prior to the news I had received that day. She immediately text me back and called in the script that night. She's amazing.
I stepped out of the car and into the concert hall. I forced smiles and hugged people. I tried to share in their excitement of the baby.
"Oh I am just so thrilled for you! I can NOT wait to hear what the baby is!"
"A Christmas baby, what a blessing!!"
"You look so adorable!!!"
My answer to the question, "How's the baby doing!?" was "Baby is growing big! Probably my biggest so far!"
But inside, I was filled with the dread of suffering that loomed on the horizon. The freight train was headed our way, I could hear it. I was laden with grief for my baby once more. Seizures?? I was heavy for Remy and Sander. I felt that their baby had been taken from them...again. Is this even real?? It was just too much to process. I was feeling light headed, probably because I hadn't eaten. I wanted out of there.
I stole my sister-in-law, Kari, away to the bathroom to ask if she would take over the bake sale that our team had coordinated. There wasn't anyone in the bathroom, so I told her we had an appointment and it wasn't good. I tried to get the words out, "They found 2-3 spots on the brain.." but I completely broke. We ushered ourselves into a stall where I was pretty much hyperventilating. To have acknowledged it out loud proved to be more than I could handle. Lesson learned, I wasn't ready to talk about it. I needed to go home.
I am not that strong, folks.
I slowed my breathing and wiped my tears. Thankfully, the venue was dark to hide the redness left in my eyes. I made an early exit around 11pm without many good-byes.
Aaron and Kari took me home and the ride was silent. I came home to an empty, quiet house. I called my mom around midnight regarding arrangements for the next day's soccer games since she had the kids. We had a very raw conversation, one I told her I am sure I would later regret. I fell into bed that night without a prayer on my lips. I was exhausted and angry.
"The churning inside me never stops; days of suffering confront me." Job 30:27
Sleeping on it did not help. In fact, I awoke to a well meaning text, that did the exact opposite and set me ablaze. Justin and I got up and quickly got dressed and out the door to make it to Sander's early morning soccer game. It was a beautiful sunny day. I got my chair, set it up and watched his game. I didn't want to see or talk to anyone. I couldn't swallow small talk. I couldn't fake a smile. I didn't want to talk about what was happening.
a) No one could possibly say or do anything to make me feel any better, so I didn't even want to hear their attempts.
b) No one could possibly imagine what I was feeling or come close to understanding, so why bother trying to explain.
c) I was ashamed that I wasn't handling this better. After all I had learned and been shown of God's mercy, grace, goodness and presence during Bryer's life and death, shouldn't I be? Shouldn't I be able to take this in stride and be a testimony of strength and faith?
I was far from that.
"Yet if I speak, my pain is not relieved; and if I refrain, it does not go away. Surely, O God, you have worn me out." Job 16:6-7
We had about an hour between Sander and Remy's game, so we went to my Mom and Dad's who live close by along with the rest of the family. I didn't want to be around anyone. I didn't want to eat. So, I went in the house, dropped my keys and told Justin I was going for a walk. I stepped outside and got about 20 yards before I broke into a run. I hadn't ran in several weeks. I didn't care. I wasn't dressed for running (except the shoes). I didn't care. I took a comforting loop around the LARGE field in front of my parent's. I didn't stop. Angry tears threatened to overtake me and I'd start to heave for breathes, but speeding up choked them back down. I ran the 3 miles hard and fast. It felt therapeutic, but also strange because aside from my inner turmoil and heavy breathing, it was silent.
I had shut down communication with God.
Still wanting to be alone, I walked over to the new house that we are in the process of building, which is two country doors down from my parent's.
I stood there and looked at it, hands on hips. I had been so excited about it and day dreamed about the joy we'd have getting settled there with our new addition to the family. It seemed so meaningless now. Who cares about a new house!?! It was being built in front of my eyes as my baby was being built within. There was so much more control over the process of the house and I had zero control over the process going on within me. I stood there and thought about this. I could have screamed in frustration. All the selections being chosen carefully for this house compared to all of what had gone into creating our new baby. I had spent equal if not more time in prayer over this baby as it was developing as I had in making decisions for this darn house. I knew I had no control over my baby, but I trusted so wholeheartedly and put him/her prayerfully in His hands….every inch from before they were even conceived. Again, weren't you listening? Don't you care? Why are you allowing this?!
Kind of like the song, "I was sure by now, Lord you would have reached down and wiped my tears away, stepped in and saved the day. But once again, I say amen and it's still raining." But, unlike the song, I was not to a place of praising in this storm. I was so angry. I felt as if the One I trusted most and placed all my hope in had betrayed me. I was wounded. I was completely devastated. The winds were raging, and I seemed to be suffocating under the relentless pelts of rain.
I was done.
Excerpts from my journal that weekend.
Sunday, October 11, 2015. I've been up since 4:50am for a combination of reasons. I had to pee, Sander was in bed wallering me to death and my stomach was growling from not eating dinner last night. Justin couldn't take it anymore so he scooped Sander up and took him back to bed. I laid awake for several more minutes before giving in. I got up and went downstairs not wanting to disturb the kids.
I grabbed a Neuro Bliss from the fridge. It was a new drink I found at Walgreens yesterday afternoon while there to pick up my new prescription for an anti-anxiety med. Ironic? They were 2 for $4 and I had never seen them. Yesterday, I drank the flavor "stress relief" and currently I am trying the "sleep" flavor. Seemed like it was worth a shot. Neuro Bliss plus anxiety meds equals a sure cure to it all right?
Meds. Yep, I am willing to give it a try. I am hoping it numbs some of the anger, rage and churning anxiety within. I am willing to try anything, well not ANYTHING. But drinks called Neuro Bliss and anti-anxiety meds landed on the safe list.
The name of the drink almost makes me want to laugh out loud in one of those crazy woman laughs... that then turns into an even crazier cry... which then leads me to psychotically throw the drink and watch it smash against the sliding glass door. But, instead I sit sensibly at the table in my plaid oversized pajamas and drink it down while eating a nasty little quaker granola bar to stave off the hunger pain.
Neuro Bliss. If it were only that easy.
I am not in a good place. At all. In fact, I'd go so far as to say I am in the worst place I have ever found myself. And that's saying a lot considering where I've been. I haven't prayed in two days. I just don't have any words right now. I have no song to sing.
"I am worn out from all my groaning…all night long I flop my bed with weeping and drench my couch with tears. My eyes grow weak with sorrow." Psalms 6:6-7
October 12, 2015. I have started to run again. Why not? But, it's strange and almost counter productive to a certain extent?? Running has always been my time to pray and praise and pray some more. However, I am silent, so it's weird. While I am still getting the physical cleanse, I am lacking the spirt's cleansing that I typically find. It's becoming glaringly obvious that God is by far the one I talk to the most through out the day, but since I am not talking to Him currently, my habits are all out of whack. In the shower, I would sing and pray. In the car, I'd pray and sing. Now, I am quiet. I am feeling empty...but I am still so mad.
Last night as I ran/walked I decided to talk to Satan instead. Sounds insane, I know. Perhaps I have actually gone insane. It's possible. I spoke out loud because unlike God, he cannot hear our thoughts. I told him how much I despise him and his corruption. I told him to get away from me and my family. I let him know that even though I am mad at God, I still know and believe God is more powerful than he is. I told him that he is no match for the power for Jesus Christ and that I refuse to allow him to divide and fragment my family over this. I refuse to allow him to take Remy and Sander's mother from them emotionally. I seethed at the thought of what this imperfect world full of sin has done to my children and their little bodies through disease. I told him I can't wait for the day that God crushes his head and binds him up in hell forever. I sure hope no one was sitting out on their porch that night in uptown Westerville as the crazy prego lady came walking by rebuking Satan.
But still, I am so incredibly hurt and angry that my God has not done anything about this specific situation. Yes, I know He defeated death on the cross and rose again. I have never doubted that. Yes, I know He sent Jesus as our rescue plan to save us from this world. But what about right now? These moments. My baby!? A miraculous healing on behalf of our baby would be a victory over Satan on earth in the here and NOW. Why isn't He doing that? Please, Lord give me THAT testimony to share!! Instead, I am struggling to keep faith and am made to re-engage the discipline of trying to grasp His presence in the depths of my despair. He was there with Bryer, no doubt. Yes, He was faithful to meet me in the depths and for that I am thankful and it was truly a gift that I treasure. But, quite honestly, I was looking forward to finding Him in the JOY of this next phase of life. I don't want to go back to the pit. I don't want to go, and I don't want to take my baby and family with me! Don't allow that to happen, God!
I was in the middle of a huge fit. The biggest fit of my life. I can imagine now how God was looking down on me. It's like I sometimes look at Remy and Sander in the middle of of their irrational tantrums where even if I tried to explain anything, they wouldn't have ears to hear me. He was letting me get it out.
The fetal MRI was scheduled for Tuesday, October 13. Justin and I went together. By Tuesday, I had gotten myself to a little better of a place. I was daring to trust again. I was back in communication with God after 5 days of silence. Again, I thought surely He will do something. How could He not? I felt extremely peaceful during the MRI. Of course they couldn't give us any results immediately afterwards. We'd have to wait. When we got back to the waiting room, my Mom was sitting there. We were all hungry, so we went to the cafeteria to grab a bite to eat. The three of us milling about that place trying to find our old favorites was…interesting? We sat down together and I told Mom how optimistic Justin had been as I gave him a playful pat on his back with a grin knowing how I had been the opposite and he'd been prime witness to it all. I said that I was beginning to feel more optimistic though.
"Just as long as they didn't find a brain full of tumors, (which is very possible with TSC) I think I can start to move towards acceptance." I said.
Justin looked at me, "Carey, they aren't going to find a brain full of tumors." For some reason his words cut through me and I believed him.
The next day was Wednesday, October 14. We were scheduled to have family pictures that evening, then I had pilates class and following that I was in charge of a large online event for my Rodan + Fields business. I was anxious to hear the results, but nervous. I got a call around 2:45pm. I saw the number was from St Ann's and I knew it was our genetic counselor, Sarah. I picked up the phone. She said Dr. O'Shaunnessy had the results and wondered if Justin and I could come over to the hospital to chat. No, we couldn't as we still needed to get Remy from school and head to our scheduled family pictures. Sarah said he would call back shortly and asked that Justin and I to be together. We snuck away upstairs out of earshot from Sander where I was trying to unsuccessfully hot roll my hair. He put the Dr. and Sarah on speaker and held the phone out between us. Dr. S began to talk giving us a bunch of background info regarding the situation that we were already aware of. I just wanted him to spit it out. His tone was grim and I knew. He finally said, "The findings of the baby's MRI were problematic. (Long pause) It shows tumors throughout the brain and the kidneys."
Wait, what? The kidneys too? And did you say THROUGHOUT the brain? That seems like way more than 2-3, no? He went on and said some other things… how sorry he was. I don't even know what else he offered. Sarah said she'd call me to schedule an appointment with Dr. Rink a MFM and Geneticist for next week. Ok, I said. We hung up the phone. I looked at Justin. I had to leave in 10 minutes to get Remy.
I set my jaw and continued to roll my hair. I had no time to fall apart. I whisked ourselves out the door looking very put together with matching clothes, make up for me, gel for Sander. We got Remy from school and went to my moms to have her change. Soon, Justin met us and it was time for family pictures. It was really the last thing I wanted to be doing, but it was a gorgeous fall day…dare I say perfect. We met Rachel's smiling face and round belly at our new house to start. She asked how baby was...I was...how the day was….I lied straight through my teeth recalling my scene in the bathroom with Kari.
We got through the shoot. The kids were great and looked so darn cute. Our pictures actually turned out very nice and for that I am thankful! This blog may just turn out to be one of those Christmas update cards. Here are some shots:)
Next up was pilates with my dear friend Brooke who knew, but I hadn't been letting in either. I thought the stretching and the deep breathing would be good for me. There were times where the grief and fear almost came spilling out, but the deep breaths, sighs and groans that are natural during pilates made for a great cover. I couldn't get out of there quick enough.
Finally, at 9pm was the online event I was in charge of which had ballooned way out of proportion. I could hardly think straight and my armpits were sweating. When it was over at 10:15pm, I told the team I was signing off and shut the lid of my laptop. I sat alone on the couch with my thoughts.
...and it was time to come undone.
Justin was upstairs and he's never told me whether he heard me that night. I laid on the couch and put my face in the pillow and cried the hardest I have ever cried. I moaned. I groaned. I rolled on the floor. I had reached the deepest of pits. And it was there that I found myself completely broken. Even my anger was broken. It was so strange. I had been raging for the last 5 days and I couldn't even feel enraged any longer. I was completely empty and broken in spirit. I could barely get myself off the floor and up the stairs to bed.
The next morning, I could hardly get out of bed. The kids needed breakfast, clothed and lunches packed then off to school. I forced my feet to the ground. Around 7:45am there's a tap on the sliding glass door. I look up to see my mom standing there with a bag full of "stuff" for breakfast. She always has a bag of something. She came in and takes over fixing Remy's hair and fixing the kids oatmeal with fresh peaches. She is always exactly what I need at the exact time I need it. She knew. Justin left with the kids for school and the two of us sat in the kitchen She fixed me a big bowl of the same yummy oatmeal and we talked as tears salted our coffee. I eventually had to get dressed for the appointment. She left and Justin and I made our way to Mt Carmel to meet with Dr. Rink.
Dr. Rink isn't your typical geneticist. She is quite pretty, fit and personable with a great bedside manner. Come to find out she is partners with Dr. Hickey, Bryer's main geneticist at NCH. She doesn't do in patient anymore, but rather she holds clinic hours. Her and Sarah took the two of us into a labor and delivery room for some reason. They thought it would be a better place to talk. It ended up being perfect as I used the bathroom to pee 3 times:) It was a long meeting. We reviewed the MRI report and all the other information we had. I cried. We talked about our concerns and fears. She asked if termination was a possibility. We said no, absolutely not. Justin asked the hard questions. "How severe?" "Will our baby die?" "What can you predict?" She said she would surmise it is on the severe end of the spectrum and she'd be very concerned with seizures, yes. She said it's extremely hard to predict the course these babies/children take. Otherwise, from everything else she is seeing, baby seems in good health and is growing well so she does not expect death, no. Oh yes, and in all of the geneticist's opinions, this is completely unrelated to Bryer. That was one of our first questions, so I am sure it was one of yours. This is random and what they call "unlucky".
"As you do not know the path of the wind, or how the body is formed in a mother's womb, you cannot understand the work of God, Maker of all things." Ecclesiates 11:5
My prayers changed after that meeting. "God have mercy on our baby. I'd rather you take him/her home now than it be thrust into a world of immediate despair and suffering. Please, Lord, step in and save my baby. I can deal much better with death than continuos suffering of my child. Better yet, HEAL them! I know you can! But will you??"
"Be merciful to me, O Lord, for I am in distress; my eyes grow weak with sorrow, my soul and my body with grief." Psalms 31:9
We left the appointment very heavy hearted and drained by the information we had discussed. We talked about getting a second opinion. Sarah used to work at Cincinnati Children's TSC clinic while in grad school, and I had read about the clinic in my research as THE top in the world. I read of a Dr. named Franz. People came from all over the world to see him. He headed up trials for new drugs and is the top in the field. His name sounded familiar. Come to find out our friends, Breena and Andy Holt, had seen him with their son, Zeke. He was actually the one that diagnosed Zeke with Batten's Disease. I remember Breena speaking so highly of him. I asked Sarah if she could arrange an appointment with the clinic. With Cincy only being 2 hours away, it seemed to be a no brainer, although I still felt I was cheating on NCH. Sarah said she'd try to get an appointment, but sometimes it takes upwards of 3 months. She also said she was going to get a birth plan meeting scheduled with Dr. Miller (neonatologist), Lang (MFM), Arbona (OB), Rink (MFM/Geneticist) and herself so everyone could be on the same page when baby arrives. She would be in contact with me.
This was October 15th. The Nationwide Children's Columbus Marathon was in a few days. It was such a weird time. I was basically the "captain" for our team of Bryer's Song runners. We were the top fundraising team which was amazing and so inspirational! I was trying to be motivational and encouraging, but felt I had been sucked dry of those particular qualities. I had been looking forward to this race for Justin and for all the new and old runners alike. I was excited again to be celebrating Bryer, but now my mind was elsewhere. I just wanted it to be over. I had envisioned that I would be 30 weeks pregnant that day and how exciting it would be! Turning 30 weeks to me is always such a milestone. It enters you into the 10 week countdown! I had looked forward to being nice and pregnant with my round belly, holding a warm drink, taking pictures and cheering my heart out. But now everything was so dampened. My heart didn't have a lot of cheer. I did my best. Actually, I was truly blessed by seeing all the runners that day. They lifted me up more than the other way around. It was beautiful, and I couldn't have been more proud of our team.
The day before the marathon was Bryer's 3rd Birthday, October 17th. I was feeling a tremendous sense of guilt that I had not given him the proper time. My thoughts, my tears, my reminiscing were not his. I had been so paralyzed in fear, sorrow and anger that I was unable to get my mind in its typical "birthday state". But, in the wee hours of October 17th, I couldn't sleep and my thoughts shifted to him. I sat in bed and wrote this.
I reminisced, remembered and was reminded. God was working on me.
That evening, in bed with my laptop opened, I pulled up all the pictures and videos of him. I spent a good 2 hours looking at him, watching him, listening to him….remembering him. You know what I remembered the most in those moments? Not the ugliness of suffering, but rather God was unveiling the beauty of my deep and unconditional LOVE for him. Not that I didn't already know I loved him! But it was jumping off the screen and grabbing my heart, completely trumping the disease and sickness. I believe this was a gift from above. Despite it all, I loved him so very much. Despite the stress, the chaos, the suffering, his inabilities and on and on, I loved Bryer and will love him forever. I was able to remember and see the joy. I smiled.
I felt the defenses towards my little one within begin to disarm. My heart had been so confused by how love and dread for this new life could co-exist. I was deeply sorrowed and troubled by this. Without doubt, I knew I loved him/her, but at the same time I also felt that we were standing at the edge of another black hole and upon baby's arrival we would be thrust into it head first. I dreaded what that would mean for the baby and our family. I felt like time was ticking instead of joyfully anticipating the birth. The fact that I even felt this way, made me angry. I felt like a terrible mother for having these emotions. I'll just say it, I was afraid of my baby! For a few weeks, I had been trying to detach myself and push this whole thing aside, which is nearly impossible when you're a Mommy..
Loving can hurt sometimes, but oh it's worth it.
The fear of having my heart shattered again began to fade and the newly inflicted wounds slowly started the healing process. It was as if God was taking from His overflowing vats of love and directly applying it like a salve to my wounds torn open from the past which now lay alongside fresh and gaping ones from the present. And I was still enough to let Him work. My spirit had not been still in several weeks.
"Faith, hope and love….and the greatest of these is love...It bears all things, believes all things, hopes all things, endures all things." 1 Corinthians 13:7-13
God was stirring, I took notice and thought it would be a good idea to similarly revisit my Bryer's Song blog posts to remember how He was with us. I wanted to remember Him before us, beside us and behind us. I read them all again and felt strengthened, not by my words, but by His faithfulness. I was slowly regaining my stance on solid rock. Though, I had never abandoned the rock, I sure hadn't been standing with eternal posture.
Monday morning, October 19th, I reached out and sought wise counsel from a few different sources. I was determined to do anything that would help our family prepare and cope. One of the deep layers to my grief in this was Remy and Sander. We had not shared anything with them yet. I didn't know when or how or what I should share. I felt so very protective of their hearts and their faith having heard ALL the MANY prayers they had prayed for this baby (some that would rip your heart open) and witnessed the anticipation and excitement for their baby. I needed help on navigating this. Justin and I went to counseling together. I also spoke one night over the phone with Nancy Guthrie who is an amazing Christian author and facilitator of the Respite Retreat Justin and I had gone to in Nashville for grieving parents. She has lost 2 children. She understands like no one else can. She spoke such truth and wisdom into my heart. She validated me which was so important, but she also asked me some tough and humbling questions. She left me with some things to think about, and I did. That conversation was such a gift. She has written many, many books, but this one on Hope is my favorite and has been a go-to many times.
I was taking steps forward.
I was still struggling, but was definitely moving in the right direction. The weekend after the marathon, some girlfriends and I had planned a weekend getaway to a cabin at Apple Valley. I had pretty much cut myself off from them…communication was the bare minimum which only included updates and many one word replies. I had turned down all of their offers for coffee, prayer and walks and they continued to ask. Bless their hearts. So, as Apple Valley approached, I wondered how it would go. I had been apprehensive about going at all, but it was time to reinsert myself and I am so glad I did. It was a wonderfully, relaxing weekend. I let them in…even to some of the ugly. There were tears, laughter, long walks, shared hope, venting sessions, prayer and coffee. It was so needed.
Some time had passed between appointments, so I was due for a follow up with MFM and another Echo at NCH, especially before we were to leave for a short trip to Florida. The echo came back unchanged, which was good news. I then went to MFM for another ultrasound on October 28th. Things there were also unchanged, except baby was growing bigger and bigger! I spoke to our genetic counselor, Sarah, again that day touching base about the birth plan meeting and the meeting with Cincy TSC clinic. She said she had locked down Nov. 2 with the doctors regarding the birth plan and was also able to secure a meeting in Cincy with the TSC clinic. She was amazed that she was able to get us in. I asked which neurologist would be in attendance, hoping her answer would be the world-renown Dr. Franz. She said she wasn't sure, but it would be 1 of the 5. "Is there a particular one you were hoping for?" She asked. I told her Dr. Franz would be amazing. She said she would see what she could do and call me by the end of the day.
I met my Mom, who was working upstairs in mother/infant, in the cafe after the appointment. She, I could tell, had not caught up to where I was headed emotionally. She felt this nearly as deep as me and in some ways from another perspective, deeper. She was working through her own grief all while trying to support me. I was feeling more positive and geared up for what was coming. I was telling her what I had been praying lately, which was something like, "Lord, if your will is not to heal our baby completely, I am working to accept that. My prayer then would be that you will give us something to HELP out child so as we navigate this disease we would not feel the familiar feeling of helplessness we did with Bryer. I pray you would bless us with plans, a surgery, a medication, a team. SOMETHING. Of course, Lord, I pray for your healing! But if that is not to be, please show us you are near. Give us something here on earth to help our child!!"
"Sustain me according to your promise, and I will live; do not let my hopes be dashed. Uphold me and I will be delivered." Psalms 119:116-117
As we were sitting there talking, my phone rang and it was Sarah. Her voice was excited. She had gotten us a one-on-one appointment with Dr. Franz at Cincinnati Children's for Wednesday, November 4th at 9am. What?!? This made me happy and I knew it was God's doing. So, we'd go to Disney and Siesta Key for the weekend, and when we got back we'd have two very important meetings the following week.
Florida was so fun. We took my 10 year old niece, Maddy, with us which was a treat. The individual time with her and the kids was definitely worth the fast paced whirlwind of Disney.
Justin met us there from a work meeting in Vegas and we also enjoyed some time in Siesta Key at his Dad's house. As I mentioned, I had been making strides each day with how I was coping, but a couple times a day I would get a dose of grief laid on me from nowhere. It happened at Disney of all places…you know the happiest place on earth? The last time we were there was just a month or so after Bryer had left us for heaven. I just remember being so happy to have time back with Remy and Sander after such a year of separation. That's what the whole trip was about. I was able to let go and pour into them and was free to indulge in them. When I thought of Bryer, I thought of him in glory. I thought of him being FREE. I guess the best way to describe it was I felt so much lighter…there were some lines we literally skipped our way through. This trip to Disney, I also wanted to indulge and soak up time with Remy, Sander and Maddy, but it was because we were headed for rough and unchartered waters, not on the other side yet. Big difference. That feeling would sneak up on me as I'd wait and watch for them to whiz by on a roller coaster. I didn't like it one bit.
We returned home that Sunday and got mentally prepared for our big week. First up was our birth planning meeting. I walked into the room and the first person I saw was Heidi (Dr. Arbona). She had come in on her day off. She met me halfway into the room with a big, long hug. I hadn't seen her in several weeks as I had been going to MFM, but we had been in frequent communication through text. It was so comforting to see her. She has delivered each of my babes. She's so kind and cares so much. She met me one morning for coffee when Bryer was about 4 months old. We had just got our coffee and the power went off in Starbucks, so we sat in my mini-van for about an hour talking. Later that week she dropped by fresh cut up fruit and veggies which was perfect and such a doctor thing to do;) I cannot say enough about her.
Justin and I sat down and soon Dr. Miller entered the room in scrubs. I hadn't seen him since Bryer. He heads up the group of neonatologists that took care of Bryer while in the NICU for 6 months. Smart, smart man. I had MANY long talks with him. Seeing him stirred me up….a character from Bryer's story….lots flashed back. It was a good meeting. We talked about some hard things. Bottom line was just like any other baby, we'd need to see what he/she shows us at birth and react. The only definite "order" was 48-72 hours of surveillance in the NICU for heart monitoring and a heart echo. Reason being is that some babes with Rhabdomyomas even though stable will develop arrhythmias and require meds to correct. They would be able to do all of this at St. Ann's. I was happy about that as I was bracing myself for Dr. Miller to tell me baby needed to go to NCH. 48-72 hours at St. Ann's seemed like small potatoes. I could deal with that. All other tests could be as follow up barring nothing acute shows up or happens. If you read about Tuberous Sclerosis further, you'll find that there is no set course and that each kid is different. They call it the land mind of disease. Lovely, I know. There's a spectrum and even with many brain tumors, seizures may not begin for many, many months, some years and some never. Anyway, it's complicated …perhaps that is why they call it Tuberous Sclerosis COMPLEX?
Next up was our meeting with Dr. Franz on Wednesday. I was eager for this. I love information. I need information to be able to process. We had the opportunity to meet with the expert of this disease. Good or bad, I knew we'd get a clear picture of what was going on with our baby. Even though it had been about 7 weeks since they had first found the Rhabdomyomas, there were times I caught myself shaking my head in disbelief that this was really happening. Who am I kidding, I still do that. Driving down to Cincinnati Children's Hospital was one of those times. We arrived with 10 minutes to spare before the appointment. Navigating a new children's hospital seemed surreal. It was interesting.
We finally were in the waiting room and my name was called. Since I didn't have a child on the outside of me, they treated me as the patient. Weight, blood pressure, head circumference. It was actually comical. We talked with their genetic counselor who we handed our complete chart along with the MRI scans. Then came a nurse and a social worker. Finally, they said Dr. Franz would be in shortly.
There was a rap on the door and in he came. He is taller than I expected and resembled a more refined version of santa with white hair, a beard and notably rosy cheeks. Immediately, I sensed a warmth about him. For as accomplished as he was, he did not radiate arrogance at all. It was refreshing and rather comforting. He smiled and shook our hands.
He spent about 90 minutes with us. Amazing. I had asked in our birth meeting a couple days earlier if Dr. Franz would actually review the MRI scans. The consensus from the group was "no" but he would review the radiologist report from NCH, which is what everyone else had been drawing their conclusions from. I wanted his eyes on my baby's scans. He sat down on a stool and I can't really remember how he opened our time together, because to me the meeting didn't really begin until I heard him say, "Do I have the MRI scans to look at?" I let him know that we had passed them to the genetic counselor who said she would upload them. "Oh, great!" He said as he spun around to the computer. "Let me just pull those up and take a look myself."
I think my heart skipped a beat and then started pounding. This was it. He was either going to confirm what we already knew, tell us it was worse than we were expecting or shed positive light on our situation. And we'd know in a matter of minutes.
"Ok let's see here…" he said to himself as he flipped throw the images. "Alright, here we go. See this? It's your baby…and here is your baby's brain." He paused as he looked closer.
I was literally on the edge of my seat.
"Oh…the brain involvement isn't that bad. I mean, it definitely appears that your baby has TS, but I wouldn't call this an exciting case."
I looked at Justin like did you just hear what he said?!?
"Really??" I blurted. "They told us there were tumors throughout the brain and kidneys and that it was likely a severe case."
"Really. I do see some SEN's and Cortical Tubers, but I have seen way, way worse. I could show you lots of people in this clinic with similar brain involvement…"
And before he could go on, I interrupted saying, "That are walking, talking and eating by mouth??"
He looked at me and smiled. "Yes…and are even educated, some with graduate degrees."
"Are you serious!?!" I looked at Justin again smiling.
He turned towards us and went on, "Now, I can't predict the future 100%. I can't tell you what kind of grades this child will get or if/when seizures will start. 90% of TS patients have a seizure at some point, but some are easily controlled, more severe cases are not. I would think your child would fall into the category of less severe based on these images."
I had read so much on the level of disease severity based on the number and type of brain tumors (There are 3 types in TS). I had read a few articles and studies where there were kids that had less than 9 cortical tubers that were developing normally and at 3 years of age had yet to have a seizure. I had also read that the first year of life really dictates future cognitive ability and level of severity. The longer a child can escape seizures the more chance it has to develop normally. Or if they do begin, the faster you can get seizures under control before they wreak havoc, the better the chance they have to develop normally. All that to say, I wanted to know a number.
"Can you count them?" I asked.
"Sure." He said turning back towards the scans. "There appears to be about 6 cortical tubers and 4 SEN's."
"Well that's better than…" I started, but this time he interrupted me...
"20, 30, 40, 50? I've seen that too." He said.
We talked a bit more, but then I remembered….the kidneys! I need to ask him about the kidneys. So, I asked if he'd take a look. He got to an image of the kidneys and grew quiet as he looked. "Hmm. This doesn't look to dramatic either, but it's not my specialty. I want to run this by my nephrologist before you leave and have him give his opinion."
"Great! Thank you." I said.
Now it was time for our questions and to express how important it was for us to have a plan. He was all over it. He spoke of a drug that is in the early trial stages that they give in pregnancy to the mother. It's a form of the same drug they give the actual child when they are born. He said, however, that my case doesn't warrant the side effects that would go along with it (for me), but he mentioned another case he is currently working on with a pregnancy that is much for severe so they are going to try it with her but are in the stage of presenting to a board for permission. All very interesting and cutting edge. That's why we were there and this is why I felt so blessed to have so much face time with him!
We talked about Bryer, which he was very interested in. He actually requested Bryer's medical records so he could look them over and asked if he could see a picture of him. "Handsome fella." He said with a smile. "Yes." I smiled back. We went on to explain because of our experience with seizures, most notably Infantile Spasms which are catastrophic to development, we wanted to be as proactive as possible with treatments and a plan.
He began explaining the different medications and how they use them and when. He spoke of the trials and the success and now of the FDA approval. All things of which he led the charge on. He said it's his expectation that the baby will be ok when born, acting normally. He did agree with the cardiac monitoring, but in his opinion it could be deferred for 12-24 hours. He said, if baby is acting normally and checks out on the initial evaluation in delivery room, then by all means we need to treat baby normally and give your family normal family time.
I cannot tell you what this did to my heart. That meant, barring no other complications, I could have baby put on my chest to bond…breastfeed…and MOST importantly this meant Remy and Sander could meet their new brother or sister outside the confines of the NICU. I wanted that so much for them. At this point, we had still not shared anything with them as we were waiting until after this specific appointment to have as clear a picture as possible.
He went on…Two weeks after birth he'd like to see baby and preform an EEG. The reason for this is they want to stay AHEAD of seizure activity, not chase them. MY KIND OF GUY! He said even if baby is not having active seizures there are subtle patterns on an EEG they can pick up 2-3 months prior to the onset. If they saw these patterns at any point, we would immediately begin medications for PREVENTION of seizures.
I was certainly picking up what he was laying down. Every. single. word.
He would like baby's first MRI to be at 3 months of age to establish a baseline. Any earlier presents too many risks. Other than that, treatment or intervention would be in reaction to what the baby shows us. I also asked him to explain how we work with their clinic. What if seizures start within the first two weeks of life. Can we have a rescue med? Do we call them and bring baby immediately? How do we utilize NCH? He was very patient with all the questions and had an answer for everyone. We talked about getting a script for DiStat (a seizure rescue med) which gave me much peace of mind.
We talked some more. Come to find out he went to medical school at OSU with one of our MFM docs…He said to tell him hello and that Dr. Schubert had backed into his car at one point. I told him no problem, will do with a smile. He was just so down to earth. I really liked him.
The last thing he wanted to do before talking to his kidney guy was do a skin check on us. TSC is genetic in 75% of the cases and it's a dominant gene meaning only one parent has to be a carrier. He was pretty confident both Justin and I were not affected, but wanted to take a look. Some people have such mild cases, they aren't diagnosed until adulthood. There are specific skin findings that come along with TSC, so he wanted to see if we had any of them. We changed into gowns and he came back with a black light and turned the lights off. All checked out fine. Never a dull moment.
He left to go talk to his kidney guy and we got dressed. A social worker came back in and talked for a bit. Soon there was a knock on the door and Dr. Franz popped his head in smiling and said, "By the way, it's what I was thinking….the kidneys look fine. We don't see any tumors. They just look like normal baby kidneys to us!"
Of course I couldn't believe it and made him repeat what he said. He kindly obliged. I looked at Justin again in disbelief. What?!?
We gathered our things and began our walk to the car. I was feeling so encouraged…so thankful…so uplifted. They were such welcomed feelings. I couldn't wait to share this news with my Mom and shower her with the same. I told Justin that some people might not feel as encouraged as us to hear their baby has 10-11 tumors in the brain. But I do!! And not only that, we had a PLAN!! Praise the Lord.
I was also looking forward to sharing this news with the team back home. When I did the next day, Sarah said she was going to cry. I could hear the happiness and shake in her voice. She said she had been praying specifically for us. She definitely said we should feel encouraged as Dr. Franz opinion carries the most weight by far. We made the changes to the birth plan calling for normal family time together outside of the NICU.
Since then, I've continued to see MFM. Baby is growing big, my biggest yet and on track for being 9lbs. at term! Baby continues to tolerate the heart tumors and nothing new has shown up. Babe is also breech and has been since 26 weeks. If you are friends with me on Facebook, you know I have been doing everything to try to flip it head down. After 3 natural, no drug births, a c-section would be so foreign and something I'd like to avoid. However, if I end up with one, there are certainly worse things. I will leave it in God's hands and trust that it is the best way for him or her to arrive.
So, that's where we are. We told Remy and Sander that the baby will need to have its heart monitored in the NICU after its born, but it should only take a few days. We didn't even mention the brain because they so associate a brain problem with Bryer. I don't want them to worry, but I do want them to have proper expectations and not be alarmed when the baby doesn't come home for a few days.
We decided on a last minute trip to the Cayman Islands with the blessings of my doctors the week before Thanksgiving. Dr. Arbona actually encouraged us to go. It's a place that holds special meaning to Justin as he vacationed there many, many times with his family (including his late mother) and has always wanted to take us there. Not knowing what our future will be like, we wanted to take a trip just the four of us and enjoy the quality time together. So it was kind of like a family/babymoon. It was a great decision. We had the best time.
I have more to say...more thoughts...but I'm just going to abruptly end it here because well, I am really tired and really pregnant.
Christmas is barreling down on us which all you moms out there know how much there is to do! I have felt the urge to just get this news released, so I am thankful this will reach many at once and save me from having the same conversation over and over.
I ask for your prayers over our new baby, its upcoming birth and our whole family as we continue to walk by faith even when we cannot see.
I am 100% excited to meet this little person and I have been given back the joy of anticipation rather than dread. I am so thankful to have that back in my heart.
We don't know what the future holds, but we know who holds the future and it is well with my soul. I look forward to introducing our newest member in a few weeks. Stay tuned.
Eternity - Headed Home Part 12 November 12 2015, 10 Comments
September 11, 2013
This is a small something that was a big something to me... and I will never forget. I crawled up into the bed next to Bryer and was trying to find a comfortable position. I was fidgeting with where to put my arm and how to lay Bryer most comfortably all while not falling out of the bed when our nurse came up quietly beside me. Without a word, she put the bed rail up and positioned a pillow between my back and the rail. A simple thing really, but ah it made a huge difference and is just what we needed.
"Thank you so much, that is perfect." I said to her.
Although I don't remember her name, I can still see her face. "Well, I do this more than you know." She said softly while managing a half smile.
I knew what she meant without further explanation. She left and I remember thinking, wow I bet she does do "this" more than I know. "This" being situating a mother comfortably in bed with their dying baby or child. I lay there alone with him finally snuggled in my arms watching his chest rise and fall.
My baby would be dying soon.
The gravity of what was happening weighed so heavily on me. The weight of death, it really is a visceral feeling and it was pressing in. How do people do this without hope in Jesus, I thought?
"Oh Lord, help me." I prayed aloud. "You are my ever present help in times of trouble. Give me strength. Have mercy on us."
It was early afternoon. We had known for sure we wanted to have Remy come, but was undecided on Sander. Was he too little? Would it be too much? Would he understand? We went back and forth. Well, it ended up we didn't have anywhere else for him to go, so by default (I thought) but now know it was by God's hand, Sander joined Remy to visit.
My cousin Dawn who had been one of our constants and go tos for Remy and Sander through out our journey, a huge blessing, was to bring them to the hospital.
Bryer was still semi-awake. Mom and Justin were back in the room with us when I saw the rainbow curtain pull back and there they were: Dawn, Remy and Sander. It's such a hard thing to accurately describe. My hospital world with Bryer and my sunshiny world with Remy and Sander were colliding. For the previous three weeks, Justin and I had been going back and forth between the two. From holding Bryer's hand and rubbing his curls while on a ventilator to commentating fashion shows with Remy and Sander's stuffed animals. From being present for picc line insertions and doctor's rounds to witnessing Remy ride her bike with out training wheels. From brain MRI's and code blues with our B to taking Remy to pick out her first pair of soccer cleats and shin guards. From a sleepless night at the hospital to coffee in hand at her first soccer game.
I could go on, but you get the picture.
Having been in the depths of sorrow for days with Bryer, their faces were like sweet healing nectar. I laid in a bed of despair, yet joy had just entered and radiated the room. I wanted them to come to me quickly. They stood there for a second. I saw Sander's face first. He was clutching his owl pillow pet. I was surprised to see him (pillow pet). At this point, Sander was still sleeping in a crib and pillow pet never ever came out of the crib.
Sander's face had a clear expression of worry. He stepped into the room, "Why why why why?" He stammered. "Why you in that bed, Mama?"
"Oh sweetheart, I am ok! I am just snuggling with Bryer, that's all. Come here! I am so happy to see you! I've missed you!"
I hadn't even thought about what it might look like to him, me being in the hospital bed, but with that explanation, the worry seemed to melt from his face.
He marched right up to the bed on Bryer's side and said, "Here Bwyer, I brought piwwow pet for you." He laid it down beside him. Sander was two months shy of being 3 years old. It was was his way of expressing his love and concern. Precious.
Dawn then backfilled, "It was his idea to get pillow pet from the crib. He said he wanted to bring it to Bryer. He carried it the whole way from his crib, through the hospital and to this bed."
So we took it and put it under Bryer's head. The three of them snuggled together on owl, Bryer lay in between. Owl would end up staying with Bryer all day, all night and into the morning.
Remy and Sander stayed for about an hour. Remy fussed over him with a blanket, hugged him, snuggled and then asked to hold him. So we laid Bryer in her arms and Sander crawled up beside her. Our three babes in a bed one more time.
Remy had questions which Justin did his best to answer. He told her in words an almost 5 year-old could understand what was happening. She said she didn't want him to go to heaven. She wanted him to come home.
They were given wonderful gift baskets full of toys, coloring books and crayons which was very kind. There were long hugs and lots of kisses before Dawn took them home. Later Dawn shared that on the way, they drove under the arc of a huge rainbow that stretched from one side of 71 to the other. If you know Remy's affinity to rainbows, you understand what a statement of God's love this was and that He was with us.
The time with them was a gift and I am forever grateful to the Giver of such moments. Had Bryer died during the flurry of chaos the day before, things would have been so different. Another blessing bestowed in such sorrow. Thank you Lord.
It was now late afternoon. I held him and sang to him. My tears literally bathed his hair and beautiful face. By evening it came time to start medications like Valium and Ativan. We had been leery of starting them as the doctors warned it could precipitate death, so we walked a line. But, we were at the point he needed to be made more comfortable. Once we started the meds he was asleep or rather comatose. We continued into and through the night, me laying with him drifting in and out of sleep and Justin taking turns holding.
Family was near stroking my hair and rubbing my back, as I stroked and rubbed Bryer's.
We had been warned of secretions, gasping and the ugliness of death. I was so frightened.
We watched his monitor so as to have some sort of warning. There were several times we thought it was upon us and my body would shake. It would shake like it did when I was in labor and nearing delivery. It was this involuntary and uncontrollable response. I was so afraid of it...
Death. The unknown. Would my heart survive it?
It might sound weird, but I can parallel Bryer's death to my natural labor experiences. The physical pain of labor likened to the pain I was feeling in my spirit. My body felt as if it were breaking in two while laboring and now my spirit and heart felt like it was being slowly shattered.
Yet, in both instances, I would call upon the Lord, breathing prayer and He would strengthen me. I could carry on.
In labor, primitive moans of the physical. While in the shadow of death, my spirit groaned when I had no words.
Deep calling out to deep and He would answer.
Upon delivery, all of the searing pain vanished as a euphoric happiness washed over me. My new baby is placed on my chest.
The same was true for Bryer. Upon his death, as his soul was taken into the heavenly realms, his suffering had ended, traded for instantaneous glory, peace and wholeness. My baby was taken into the bosom of Christ.
Yes, in labor, I was transitioning my babies into this world and into my arms and in these moments, I was transitioning Bryer out of this world and into the arms of our Savior.
What a magnificent thought.
Although both extremely painful, I wouldn't choose differently. Of course, I would choose that Bryer be healthy. I think we can all agree what a privilege it is to birth a baby into this world, however, I also count it a privilege and GIFT to have been present to release Bryer's back to our Heavenly Father.
The unfolding of his end days were certainly God breathed. As hard as it was, there was sweetness. God's presence was all around.
Thick. Tangible. Undeniable.
We called upon Him and He came.
Morning light was near and family dispersed to their responsibilities at home and work and would return in a few hours. The room had cleared out except for the three of us who had been present at Bryer's birth. God's timing again. Mom was resting on the couch.
I called to her and Justin.
The time was upon us, Bryer's body lay in my arms. The peace that surpasses all understanding fell over me.
It had to of because my body did.not.shake.
I was not afraid.
My heart was held and my soul was still.
There were no secretions. No gasping. Just two sweet final breathes.
And eternity was his.
I think back to this when my faith feels weakened or I question His goodness or wonder where He is in my present circumstance. Nothing has spoken more clearly to me in my faith journey than that moment.
I am reminded how REAL He is and that He WILL show up. He is faithful.
"I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world." John 16:33
Yes, take heart.
The trials, the sorrows and the losses keeps us desperate for Him and retrains our focus to be eternal and not on things of this world. He will meet us in the pit and bestow strength and peace. I cling to this!
My gaze is towards heaven and an eternity in the FULLNESS of His presence and those I love...forever.
I can only imagine.
Because of how God orchestrated Bryer's homecoming in such a peaceful, calm, beautiful way, we were able to think ahead.
A bath. Beautiful scented lotion. A white onesie (my favorite). Some warm, footed jammies. Lots of snuggling free from the confines of monitor wires and feeding tubes. Many precious pictures.
These are all treasures I am so very thankful to have tucked in my heart. He was beautiful.
There's much more I would like to share that transpired in the moments, days, months and now years after Bryer's arrival in heaven. So much. And I will. But for now, I feel satisfied that I have gotten this much down. Even still, within these posts, I've left out a lot.
Our journey continues, and I know He is with us wherever it takes us.
The Beginning of Goodbye - Headed Home Part 11 November 12 2015, 0 Comments
September 10, 2013 continued.
Justin and I walked back to Bryer's room. The feeling was the same as when we had left. Surreal.
He was still blowing raspberries because of the forceful mask.
We asked to speak with Dr. A (PICU attending) and Dr. M (Director of Infantile Spasms Clinic). They came to the room and we discussed what we thought was best for Bryer. They both were in agreement. Dr. M even said if it were his child, he'd make the same decision. That was validating to hear.
We didn't know what would happen when we took off the mask. Dr. M left and Dr. A stayed to discuss further details of what we MIGHT expect. He talked about death and the process usually being very difficult and warned us of the worst. He assured us they would take measures to keep him comfortable. That was his primary goal and ours too. He was leaving for the evening around 5pm, but said to please call him on his cell if we needed anything.
I so appreciated Dr. A.
The mask came off while he was in my arms and I think we all held our breath for the next several minutes. Minutes strewn into hours. I passed him to Justin. Justin passed him to Mom. Mom passed him to me. I passed him to Dad. We did this all night long in the rocking chair.
He was so loved on. He was so wanted.
Morning came. It was September 11, 2013. They asked if we wanted to be moved to a nice big palliative care room on the 12th floor. We thought about it for a minute, but declined. We'd have to meet a whole new set of people. That wasn't something we needed at the time. So, they offered to move us to a quieter and much bigger room on the other side of the unit at the end of the hall. They'd arrange to have an adult size bed put in there so we could lay with him. I liked the sound of that and appreciated the thoughtfulness.
We moved over smoothly and at this point it was only me, Justin and B. My mom went home to shower and come right back.
I was sitting with him rocking when I heard the curtain pull back. I looked up, and in walked Kim. Bryer and I's dear sweet Kim. She had come to say good-bye. I was so thankful to see her. I hadn't been communicating with anyone for the past several days, so she found us on her own and I am so glad she did. She stayed for a short while. We talked and cried. She combed his hair with her fingers. She kissed his forehead and left.
I remember looking out the window. The sky was so gray.
Decisions - Headed Home Part 10 November 11 2015, 0 Comments
September 10, 2013 continued...
Justin arrived that afternoon and we left together to talk. We walked down the colorful hallway of NCH sponsors making our way from the PICU towards the other end of the hospital where there was a cafeteria. I clearly remember feeling a little out of body.
We held hands and walked. It kind of felt like we were slowly floating. Maybe it was just because I was exhausted.
People whizzed by hurriedly. Doctors on their way to a consult. Parents pulling kids in wagons. Family clutching balloons making their way to visit.
And who knows, perhaps we were passing a couple headed the opposite direction to discuss similar things.
It was surreal.
We made it to the food court and chose asian. I think I might have taken one bite of food. I was hungry, but felt sick. We headed outside to the circular walking path that enclosed the playground and walked as we talked. I filled him in on the morning. The MRI results and the neurologist's opinions. The code afterwards.
We ended up on a bench nearby where we concluded our conversation. I laid my head on his shoulder as we sat quietly for some time... knowing that when we got up from that bench we'd head back inside to Bryer's room and make our decision known.
The mask would come off at 6pm. He'd be in my arms. We'd love him into eternity.
The Hurt and The Healer - Marathon 2014 October 17 2015, 0 Comments
It's 5:45am. I've been up for almost 2 hours. I'll just be honest, Remy woke me up crying because her butt hurt. Yep. Through tears, she begged me to "come check it in the light." Diagnosis = chapped rear. I haven't been able to get back to sleep for a myriad of reasons. Lots on my mind, heart and soul.
Today is Bryer's 3rd birthday. It's a fact that has almost gotten lost in the week that we've had. But in the dark of this morning, arms and legs wrapped around my maternity pillow, I am remembering.
It is also marathon weekend which brings much excitement. I can't help but think on the marathon last year…and I've been trying to relive and recreate the gift it was to me…yearning to find and feel Bryer and God as I did so tangibly that day. I need to get there again so desperately.
So, here I am with the laptop open.
"No pen or quill, no scribe in perfect skill
With flawless words could capture all You are
No lofty thought, no scholar of this world
Could grasp an inch of such infinity
Though we cannot comprehend such a mystery
Just a glimpse of You revealed is compelling us to sing…"
I've yet to share about my Nationwide Children's Columbus 2014 Marathon. I've had much trepidation that I wouldn't be able to summon the right words to match the dimension of the experience. But much like the above lyrics, the glimpse of Him revealed is compelling me to write. TRY to write, anyway. Let's see where this goes.
To God be the glory.
Before I get to the race, I need to back up a bit for this all to make sense. For those of you that don't know me well, I was always considered an "athlete". I was a basketball and volleyball player in high school. And I guess I was good enough to have been asked to play in college where I enjoyed (most of the time) playing roundball for 4 more years at The College of Charleston. After graduation, when I had no more teams to play on or competition in my life, I picked up running. Running became an easy something to do to keep myself in shape, but it also began to fill the gaping hole basketball had left behind. I began going further and further, competing only with myself. It satisfied something deep within and there on some back road bordering Delaware and Licking County in rural Ohio, my love for running was born.
I ran my first marathon in 2004 and was hooked. It became a passion. I could figure so much out on a good, long run. I hashed things out with God. I praised. I unloaded my stress. I took in the beauty of God's creation. I day dreamed of becoming a wife and mother. I spent invaluable time with my girlfriend, Chrissy. When I traveled for work, one of my favorite things to do was lace up my running shoes. Hello Las Vegas Strip at 5am. Good morning Manhattan Beach, CA! Central Park, you are beautiful! San Francisco you are busy and steep. Park City, Utah you are breath-taking…literally. I loved to run. Period.
I went on to run The Columbus (twice), Chicago, Richmond and Paris marathons. There's a reason I am telling you all of this….I promise I'm getting there.
In October of 2008, Justin and I welcomed our first child, a daughter. We named her Remy Pearl. Motherhood was pure bliss and more than I ever had day dreamed. Completely love drunk, I couldn't imagine adoring anything more.
She was 6 months old. I had been having some random but manageable pain, but then one morning I woke up and couldn't move my neck and my elbows were locked up. For the next couple of months, I went to the chiropractor and several other doctor's for the various problems that I thought were unrelated.. I was in the middle of training for the Cleveland Marathon and got up to 20 miles in training only to have to bow out at 13 during the race. I was miserable and it got worse. Most mornings I couldn't get out of bed. It only got more intense. After a few months, I was finally diagnosed with Rheumatoid Arthritis. I had never heard of it before. Have you? By the time Remy was 14 months, my quality of life was pretty terrible. My knees were completely hot, swollen and stiff along with my neck and both elbows. I cried most days. I shuffled into work because I could hardly bend my knees. Turning the steering wheel, washing my hair, pulling my shirt off, picking up my daughter, bathing her, turning over in bed….and the list goes on….was excruciating.
I went from a strong, athletic, independent women to a very dependent, weak, sickly and immobile one. Not only that, but I was losing my ever loving mind. My one stress relief was absolutely not in the realm of possibility. Running? No Way. Therefore, I had zero coping method for what, up to that point, was the hardest time of my life.
It was an extremely dark and trying period. I waded through a lot of muck externally and internally. I went through some ugly stages of bitterness and anger. I had heated arguments with God. I was depressed. I didn't like this new person I had become. I didn't know how to be her at all, let alone with grace. I was bound with fear of what my future might be like should I remain in this state or heaven forbid get worse.
Amidst all of this, we had Sander William in November 2010. A Bright spot:) My RA does better in pregnancy, so I enjoyed the remission. It came back after he was born and to make a long story short, I then got pregnant with Bryer and he was born October 17, 2012.
Everyone knows the year we had with Bryer. By the time he left us for heaven, I hadn't really ran in almost 4.5 years.
The month following his death (September 12, 2013) was The Nationwide Children's Columbus Marathon and Bryer was a Patient Champion at mile 21. Justin had signed up to run it that summer while Bryer was home. With the turn of events and Bryer's death, it was nothing short of amazing that Justin went ahead with the race. Without proper training, he managed to run it in just under 4 hrs. I have never been more proud of him.
I watched the runners that day. I was more than moved. I had been through my own recent war and had entered a new battle called grief. I was so weak and worn, but these men and women, they ran in my place. They ran in honor of my baby boy when I couldn't. They were pushing themselves beyond the limits to honor his life. They were running for children still fighting for their lives and in celebration of those children who had triumphed. And while I celebrated with them, every fiber of me wanted to be out there. Oh, I never have wanted to run a race so badly. I would do anything to honor and celebrate my child.
We got home from the marathon and while Justin recovered on the couch, I laced my up my shoes. I just HAD to run or do something. I made my mind up and set out on a familiar old walking route across Alum Creek Dam. It was the PERFECT fall day. I ran. I hadn't ran in years, but I kept going. The sun was beating on my face. I looked up into the sky and the clouds were lined up in white stripes laid perfectly against the bright blue sky. I love stripes. I smiled. I kept going knowing full well how my mind works: however far I ran out, I'd make myself run back. I ran a total of 5 miles that day. It was glorious. It was to Bryer from me and to me from God.
***I had noticed a reprieve of RA symptoms during the last few days of Bryer's life. Typically, if I had laid down for a long period of time, my body would become painfully stiff requiring me to crack my elbows or knees back to straight. I remember being aware of how fluid my body got off his bed after laying there for hours with him. It is definitely something I took note of, that's how strange it was.****
So it's hard to pinpoint when exactly I started feeling relief from my RA, but after that 5 mile run, I just kept running. Responsibly, not wanting to over do it or throw myself into a flare, I'd run 2-3 miles a couple times a week. It was bliss. Then 3 times a week. I cautiously increased my mileage over the course of several months until one day I tried 8 miles with Bryer's PT and my friend, Kim. We did it…and fast. I couldn't believe it. I think I cried when I got back in the car, finally alone. That was the spring of 2014. By mid summer, I was consistently running 5-6 miles 3-4 times a week. I was so content and beside myself to have running back in my life. It was such a nice companion in my grief. A true gift that I didn't take for granted one second.
Never did it occur to me that I might be able to run the NCH 1/2 marathon let alone the full. Justin signed up again which I was surprised about. So, I just did it one day. I signed up … for the FULL because it was only $15 more. What a deal! ;) I figured I could always just run the half if my body didn't cooperate. And, there was my plan: see what my body allows me to do. Kim signed up and our training began. Oh and I must mention, I went off my medication in June due to it causing hyper pigmentation of my skin. I was turning into a smurf, no lie. So here I am, a woman with Rheumatoid Arthritis, off all medication and training for a full marathon. Probably not too smart.
It was now October, 2 weeks before the marathon. We finished our cold, windy, sleet driven 20 mile training run. Though feeling a bit delirious and I can't say I wasn't hurting, our last long run was in the books. Unbelievable. This meant I was going to attempt the marathon. I was really going to do this. In the parking lot of Worthington Hills Market, I put my head on the steering wheel and sobbed.
Marathon day 2014
All of that to get me to this point. The race! You can understand now how emotionally charged this race was on so many fronts. To have thought the year before as I hugged Justin at Mile 21 that I would have the opportunity to run it myself, I wouldn't have fathomed. Not only that, but I had the best training buddy and friend beside me, another gift.
The simple fact that I was standing in a corral, with a race number across my abdomen, earbuds in my ears and Little Cow tucked securely into my shirt was a miracle. The music, the fireworks, the energy from the crowd, the shirts that championed children who are fighting for their lives or in remembrance of. I was completely bombarded with emotion. Tears streamed down my face and the gun went off for the start. Here we go..
Kim and I are cruising. It's a beautiful day. We are seeing family and friends and lots of signs. My heart is so full. We are seeing other Bryer's Song runners. We are on pace. It was glorious.
Then at Mile 16 Kim started to feel a little funny. We stopped for several minutes. Her heart was racing and she felt light headed. Long story short, after much discussion, which involved a not so helpful police officer, she decided she should get medical attention. She told me to go on. Sigh. I was bummed, but I chugged on. I was now at Mile 18 and I turned on my music for the first time. It was on shuffle. The course and crowd were sparse at this point.
And here's where words won't do justice.
I ran. And I don't know where else it could have come from, but God. But my last 8+ miles were faster than any of the previous. That wall that I have hit it every one of my previous marathons… you know the point where you feel like you might actually be running on broken bones and you are running as fast as you can but it's barely faster than walking? It never happened. I don't want to over romanticize it, of course I felt some pain, but it paled in comparison. AND this was with my 34.5 year old, post 3 kids and RA body we are talking about.
My ears were flooded with music as if it were perfectly choreographed. I remember lifting a hand in praise and worship as I ran through Upper Arlington, the sun brightly peeking through houses and trees. I closed my eyes for moments. I felt like I was in a dream.
"You crush the enemy underneath my feet. You will deliver me. Yours is the victory."
"There's hope in front of me
There's a light, I still see it
There's a hand still holding me
Even when I don't believe it
Even after all I've seen
There's hope in front of me"
The last 5-6 miles…I could FEEL Bryer with me.
See, part of the deep ACHE, no matter what I know to be true in my faith, is the loss of the physical Bryer. My baby. I try to recreate it, find him, but if ever I do, it's a fleeting moment…a scent, a taste, a sound. Then it's gone. But these last miles, Bryer was so near. I wasn't grasping for him either, he was just there. I would squeeze Cow's head right beneath my chin as if to squeeze Bryer's hand. Yea ok, reading this back…it all sounds weird and dramatic. I can't explain it.
I thought about Bryer's own race here on earth and I ran for him. Almost like, the harder I ran and the more I gave could somehow replace his some of his suffering. Futile I know. Oh how I would've taken his pain upon myself. I guess this run was a physical expression. With everything I had, I ran for him. And there's simply no other way to put it, he was WITH me and he was happy.
Then there was God's presence. SO STRONG. I hadn't felt His presence like that since the day before and day of Bryer's death. Thick. Truthfully, I had ached for it as I had ached for Bryer...and they both were there as if I could touch them.
As I ran, I praised the Giver of these sacred moments. This race was a praise offering to my most faithful and loving God. I was completely overwhelmed by God's goodness in allowing me such an experience. I was completely lost in it and most certainly carried by it.
The three of us floated through Victorian Village The crowd got denser as I neared the finish line. I had one more turn to make and these are the lyrics that played into my ears and wrapped around my heart and soul.
The Hurt & The Healer"Why?
The question that is never far away
The healing doesn't come from being explained
Jesus please don't let this go in vain
You're all I have
All that remains
So here I am
What's left of me
Where glory meets my suffering
Even though a part of me has died
You take my heart and breathe it back to life
I fall into Your arms open wide
When the hurt and the healer collide
Sometimes I feel it's all that I can do
Pain so deep that I can hardly move
Just keep my eyes completely fixed on You
Lord take hold and pull me through
So here I am
What's left of me
Where glory meets my suffering?"
And as I turned the corner and saw the finish line, the bridge came on. I ran to the finish line of my race and I meditated on the finish of Bryer's race...the actual moment he finished... as I listened to the following words….
"It's the moment when humanity
Is overcome by majesty
When grace is ushered in for good
And all our scars are understood
When mercy takes it's rightful place
And all these questions fade away
When out of the weakness we must bow
(And as I crossed the finish line)
And hear You say "It's over now"
3:39 19 seconds. Only 4 minutes slower than my best time (ran by a 25 year old, non mother, non RA diagnosis) And I put my time not to brag on me, but to brag on God. That was not me. That was a gift. It could not have happened by my own strength or merit.
I pulled out Little Cow from my sweat soaked shirt and made my way to a white fence where I slumped over in a heap of tears. Emotion came as the all the angles of what had just happened collided. All the parallels. The praise. The reverence. The remembrance. The gift. Bryer's eternity.
And then I cried more because it was over. I wanted to remain in the thickness of God's presence. I wanted to remain in the closeness I felt to Bryer. The searing separation became so evident once more. I had just had a GLIMPSE of heaven. Maybe not with my eyes, but with my spirit. Can you imagine what it will feel like when we are actually standing face- to-face with Jesus in the fullness of His presence? The reunion with our loved ones?
My mind cannot even comprehend the glory, but that day my spirit got just a taste.
I needed that reminder today.
Slobbery Raspberries - Headed Home Part 9 October 11 2015, 0 Comments
September 10, 2013 continued.
Bryer's eyes rolled back into his head, he stopped breathing and turned blue. I looked up and to the right at his monitor and his heart rate was steadily dropping along with his O2 stats. Our nurse at the head of the bed pushed the code button or pulled the cord? I can't be sure which, but I know she moved into action.
The rainbow curtain ripped back and the first face I saw was the last face that had just left. Dr. A looked serious and quite shocked.
"What happened?!?!" He said as he swooped down to the left side of the rocker where Bryer was still in my arms.
I leaned my head back as far as I could to make room and fully expected them to scoop him from my arms. Many others rushed in….
Dr. A took Bryer's neck and jaw and began trying to position it upwards and back in order to help open his airway. About this time is when I heard another doctor yell urgently across to Dr. A from an intubation tray laid out with instruments, "Do you want an airway!?"
Dr. A looked at me. I shook my head back and forth with tears running down and said, "It's ok. It's ok. It's ok." In one of our conversations from days before, Dr. A had mentioned how much more difficult it was to make a decision to take out a breathing tube than it was to decide not to place one. That flashed to mind.
Again the doctor from across the room yells, "Do you want an airway?!"
At this point, Dr. A, who was on his knees, spreads out his arms in a "back-up" type of motion and says, "I've got it." He looks around the room and repeats authoritatively again. "I've got this." The other doctors and nurses step back.
He had taken a neck brace from who knows where and put it around Bryer's neck and gotten his heart rate back up and O2 was climbing.
He looked at me and said, "He's losing his airway."
I will never forget these moments. Bryer still in my arms and Dr. A inches from my face.
Right around this time is when my brother, Aaron, slips in unaware as to what he was walking into. He went over and sat quietly on the couch.
Dr. A asks, "Will your husband be coming?"
"I can call him. Aaron, can you please get ahold of Justin and tell him to get down here?" I called out in the direction of the couch.
Dr. A then arranged for a special type of mask which fit just over his nose. He said it would only be a temporary solution which Bryer could wear for maybe up to 12 hrs. It was set to higher support than a vent and was literally pushing air into Bryer's lungs and then forcing it out keeping his airway open. In fact, it was so forceful that with each breath out Bryer blew slobbery raspberries.
He then looked at me and said, "You and Justin will need to take some time and talk when he gets here.
"Victory" September 10 2015, 0 Comments
I have mentioned the song, "Whom Shall I Fear", several times as one of great significance. It gained such a position in my heart not only by the frequency in which I sang it to Bryer, but also the conviction and prayerfulness by which I sang it. It seeped into my spirit and became a battle cry of sorts. A claim, probably strengthening me more than it comforted Bryer in those moments of uncertainty. Through song, I was reminded of who was behind us and who went before us as we fought. The one who reigns forever! The God of Angel armies!
And now that Bryer's battle is over it's a claim of Victory.
We claim Victory over Bryer's death through Jesus. Victory because in that moment Bryer was made new and given ever-lasting life in glory. Death and suffering did not have the last word. No, let us look at what mercy's overcome. Death has LOST and love has WON.
But this is never just about us or just about Bryer.
Every one of us battles something. Not just the battles of illness, losing a loved one or grief...
What darkness is filling your night?
What troubles are lingering still?
What do you need delivered from?
What do you claim or need to claim Victory over?
Addiction, anxiety, fear, pain, doubt, loneliness, body image, insecurity, stress, envy...there are so many more...
Maybe you need to re-claim it again and again…. by the minute, by the hour, by the day, by the week or year. I know this is true in my life.
It's our hope that this shirt can serve as a reminder of a Victory claimed and inspires you to press on for the ones to come!
Thank you for your love and support!!
MRI Results - Headed Home Part 8 September 10 2015, 0 Comments
Tuesday September 10, 2013
After I dropped Remy to school at 9am, I headed for NCH. Mom had kept us up to date during the night which she said went very well. Surprisingly, they were able to wean him to just a nasal cannula over night. I swung by Starbucks to get a coffee and remember feeling encouraged and a bit lighter knowing Bryer seemed stable and improved from our scary weekend. I couldn't wait to see him.
I pulled into the parking garage and was thankful for the short jaunt up to the 2nd floor. The hallway seemed bright, the sun bursting through the windows and oversized glass doors of each room as I made my way to Bryer's. I arrived at his door and it was open. The curtains were already pulled back. It was so light and sunny, almost cheery. And there he was, his mess of dark hair standing out against the crisp white of his bedding, nasal cannula in place with eyes open. It was such a welcome sight. Under the circumstances, he looked so handsome… and big! I felt happy.
There was an ultrasound tech there doing a scan on his leg which had formed a blood clot from a complication with his Central Line placement a few weeks earlier. I took this video to show Justin and the kids later. He even talked just a tad:) It was during this time I noticed a ding on his monitor. It indicated his temp was rising, which they had under control for the last 24 hours.
After the ultrasound was done, I asked to hold him and we got comfy in the soft rocker between his bed and the door. Mom perched herself on the end of his bed facing me so we could visit.
Not long after we were settled, two neurologists in white coats and black dress shoes came into the room with Dr. A trailing behind who closed the door and pulled rainbow the curtain. They had come to discuss the brain MRI results from the day before. One stepped forward.
"Hi. Are you Mom?" He said looking at me.
"Yes, I am."
"And you are...?" He said looking at my mom.
"I'm the Grandmother." Mom replied.
"Hi." He said reaching out his hand towards me. "My name is Dr. Lowe. I am an attending Neurologist. We've come to discuss the results of Bryer's brain MRI. Is it ok to discuss now?" He said looking at me and then my mom.
"Yes. Whatever you have to tell me, you can say in front of her. It will save my breath since I will tell her it all anyway." I said smiling.
He then went on to introduce the other standing nearby, I think a resident? Next he pulled over a computer…I think it was just the one that is on wheels in the room that nurses chart on? It's an unnecessary detail, but it's bugging me that it's fuzzy. Perhaps they wheeled one in with them. Regardless, it soon came to life with images of what my untrained eye could clearly see to be a brain. Bryer's brain.
He began talking and pointing and changing pictures of Bryer's images on the screen.
I knew something was coming. Some type of news was on their lips. You could tell just by their demeanor and how they entered the room. I continued to rock Bryer as I listened.
"Do you see these white areas here?" Dr. Lowe said as he pointed. "These are consistent with deterioration and brain shrinkage…They're almost look like lesions."
"Upon comparison with his last brain MRI, it could be said that Bryer's brain has completely deteriorated." He continued in much greater detail and then added, "Unfortunately it will only continue to deteriorate. I am so sorry, Mrs. Largent."
The information sank in as I rocked. I felt heat rush over me as it did. I wasn't shocked at such news, but it was still heavy. It's hard to describe, but there was also a sense of so-that's-what's-going-on relief. It certainly wasn't the answer or information we would wish for, but it was an answer nonetheless. After almost 11 months of no prognosis for Bryer, we had a definitive one put right in our laps.
"So what does this mean?" I asked knowing the answer, but not wanting to say the word.
"The deterioration will continue and he will eventually lose all function." He answered. "By appearance, it looks to be very much in line with Leigh's Disease, a type of mitochondrial disease. Typically when kids are diagnosed, their health is right about here (putting his hand out in front of his face as a measurement) and they continue to decline over a period of time. Bryer's health is here (putting his hand out in front of his chest as a lower measurement). He doesn't have very far to go."
I had stopped rocking and just looked down at Bryer who was awake in my arms. I cannot remember if I cried. If I did, it wasn't break-down sobs...Perhaps just silent tears slid.
I had become well versed in mitochondrial disease as a possibility of something Bryer could have as he fit the phenotype. However, weeks later we would meet with our geneticist whose emphatic stance is that Bryer did NOT have mitochondrial disease. His genetic testing did not line up with the neurologists clinical thoughts. Bryer had his Whole Exome Sequenced, which is the highest level of genetic testing one can have done. It had come back inconclusive and all of his mitochondrial DNA was normal. I could go on, but genetics is tedious and complicated.
The point is, though we had a HUGE piece of the puzzle solved by the information gathered that day from his brain MRI, there is still part that will always be a mystery.
I'm not sure how long that meeting with the neurologists lasted, but we concluded by making arrangements to consult later in the day with the Director of Infantile Spasms and a few others about how we would proceed. Soon they were filing out just as they filed in. Dr. A was the last to leave. Our nurse for the day remained at the head of the bed near the monitors where she had been the whole time. The three doctors got maybe 6 steps down the hallway...
What happened next can only be described as…well...I don't know how to properly label it. But, in hindsight, it is clear that this is the point where God absolutely stepped in and said, "Ok my beloved, sweet and weary children…I'll take it from here."
Signs - Headed Home Part 7 September 05 2015, 2 Comments
September 5 continued...
For all that was happening, I remember laying my head down on the scratchy sheet covered couch that night with more peace and calm than usual. I'm sure it had something to do with Justin being by my side, but it was more likely God's overwhelming presence.
The night was pretty uneventful. We woke when nurses came to check and respiratory therapists came to adjust vent settings. But comparatively speaking, it was much more chill than Bryer's typical overnight stays. He was sedated and breathing easy thanks to the ventilator. He was resting and seemed to be in zero pain. There wasn't much for Justin and I to do, but be present.
Friday, September 6.
Justin went home in the morning to be with the kids and I traded him spots later that afternoon. They said they were quite surprised of his progress and how they were able to wean the vent like they had.
That evening I took Remy to get her first pair of soccer cleats. It was a fun shopping trip, followed by Grinder's subs and when we got home we tried out her new cleats in the yard. She even rode her bike for the first time with out training wheels...A big deal! Sweet, sweet memories. Bryer's status remained the same.
Saturday September 7
I took Remy to her first ever soccer game. She would be turning 5 in a few weeks and she seemed so big! But looking back, she was still so small, her baby teeth still neatly in place. It was a glorious and beautiful fall morning... surreal. Sander sat next to me as happy as a clam in his miniature-sized chair, loaded down with snacks, drinks and a smile. I beamed as I watched Remy in her double-braids. Bryer was not far from my thoughts. I held my phone in my lap not to miss Justin's text updates and in return I shared pictures of Remy. I know he felt torn as well. I then went to trade spots with him that afternoon around 2pm which began my 24 hour shift.
It was so quiet.
Bryer was still sedated and on a ventilator, so of course it was. We couldn't hold him and he "slept" the entire time. There wasn't the grueling all-day and all-night of consoling and comforting hunched over his bed on our feet or the helpless feeling that accompanied what sometimes seemed like our fruitless effort. There weren't procedures or consult after consult.
It was calm.
I wouldn't choose him to be so sick requiring sedation and a breathing machine, but it was a nice change to see him just resting and comfortable. No seizures. No yelps. No moans or groans. No sweat soaked hair or wide eyes.
But it seemed so lonely.
Perhaps it was because I wasn't completely occupied with his needs. But also, my mom worked Fri, Sat and Sun night that week-end, a tough stretch, so she wasn't available to visit or chat. I am still not sure how she maintained working full-time night shifts during Bryer's life while doing all she did for us. I know now she battled her own physical and mental exhaustion. Ironically, she was scheduled to go part-time September 15. . .
The only "companion" it seemed, outside of the nurses, were two signs.
The DNR (Do Not Resuscitate) instructions were posted at the foot AND head of his bed. And I didn't like it. Because of the conversations we had with Dr. H a few nights before and our declining of the anti-viral drug (which became a moot point because Adenovirus was NOT found in his lungs) it had led us into further discussions regarding DNR. We had prayerfully settled on a decision that, without going into too much detail, would allow for certain measures, while declining others. Those details were, again, spelled out in RED at the head and foot of his bed. I understood why it was necessary. I did...
But their presence picked a battle within. A battle between my flesh nature and my spirit. Are you familiar with those? You know the ones where you can have settled in your spirit and felt led by THE spirit in a certain area or about a certain decision? You have this peace, the kind that doesn't even make sense. But you know it's there, like a soft blanket that gently descends, tucking you in.
And you rest beneath its security.
But then, because we are still flesh and not fully spirit, our humanness bubbles up to the surface and begins to disrupt our settled spirit. The enemy thrives in this circumstance and just fuels the fire with lies and doubt. Our peace is taunted or stolen for moments….and sometimes it's stolen for longer. The soft cover is ripped away, leaving you cold and unsure in the dark.
Hitting your knees, you battle back. Relinquishing your will and asking for His to be done instead. Because your spirit knows, that's where peace can be found. That kind you don't understand but long for.
Have you ever found yourself there? Well, that's where I was that weekend. In that room. Staring at those signs.
Maybe I wasn't as prepared to let go as I thought. My hands wanted to tighten their grips on his failing body and never let him go. But my spirit longed for his spirit to be free and experience the fullness of life.
I don't know…maybe I am not making sense with the description of my struggle. And maybe it's even too much to share. But there it is. It's how I was feeling.
It's that weekend that I first remember God putting a tune into my head…very subtly and softly…but it was there. An old hymn, just the chorus, reminding me to keep standing on The Rock because all that other stuff is just sinking sand.
It was now early evening. I left his room and made my way to the green space in front of NCH. I needed to get away from the signs on his bed and talk with God. There is a park with a circular path in front of NCH and I began walking. I walked and walked and prayed.
Anxiety bubbled when I thought of them bringing him out of sedation and extubating him. What then? They would seemingly be undoing the peace it seemed he was experiencing and allow the seizures to regain their grip. I started to feel physically sick. It was September and the back-to-school germ fest had commenced at our house. Then comes winter with all its respiratory vices. How could he make it through the fall, let alone winter?
"Oh Lord, what now? What is next? What are we to do? Lord, show us. HELP us. I am choosing to trust. I am choosing to trust. I am choosing to trust." I remember saying that over and over and over....and over.
I went round and round that park. I am a person that researches to the end of the earth. I want to know everything and be informed to the nth degree. As I walked, I pulled up research, accounts and articles on West Syndrome/Infantile Spasms…protocols, outcomes, prognosis. I thought. I prayed. I read some more. I repeated. It was dusk and starting to become unsafe, so I headed back inside.
There was that chorus again in my head. So faint, it was almost just lingering in my subconscious.
Sunday September 8
I went home Sunday afternoon and took the kids to their favorite park. I slid down slides and chased them around. We had received a large package the day before and had yet to open it. When we returned home, I set it on the ottoman and made a big "to do" letting them rip into it. It was a huge care package from my dear friend in NC, Chrissy. Things for Remy, Sander AND Bryer and something sweet for me too. It was absolutely. perfect. timing. It was a box of joy and smiles. We snuggled together on the couch and read the books and played with the new toys. We still have the book they sent for Bryer which she wrote in. It's in Sander's collection of books which he still occasionally picks to read. Every time he does, I read what she wrote out loud and it makes me teary.
Take a lesson from Chrissy, send a box of joy:)
Monday, September 9
I arrived earlier than usual. Upon my request, Bryer would have a brain MRI before they tried extubating (taking out the breathing tube) him later in the day. Since he was already sedated and intubated, I had proposed in Sunday rounds, "Why not?" He'd had a lot of seizure activity and his last brain MRI (which was normal) had been when he was 4 months old, so "Doesn't it make sense?" I don't know if they just obliged the Mama or if they actually agreed it was a good idea. Nevertheless, we had it done, a kind of a lengthy process. They'd have the results the following day.
Later that afternoon, Justin and I were both there when they would attempt to extubate him. Dr. A (the attending that week) had talked about different scenarios that could possibly occur. We braced ourselves at the foot of the bed.
To our amazement and delight, he did just fine and was placed on Bi-Pap. It was a pretty good evening actually. He looked like a little astronaut with his mask on and he was wide awake. So. Darn. Cute. I got to hold him for the first time in about a week. He still was having small seizures, but we talked and cuddled for hours anyway while he repeatedly flashed me that darling tooth. Mommy's treasure.
I was beginning to think, "Ok, God. Are you bringing him around?"
He was doing well enough that I felt at peace letting my mom stay that night since I had been there for about 15 hours. We'd go home to get a good night's sleep, take Remy to school the next morning and I'd come down after I dropped her off.
Sweet pumpkin rolls and dog ears August 22 2015, 1 Comment
August 21, 2014 - lifted this from my journal. A year ago. Just a little something sweet I came across as I continue to write out Bryer's end days.
Here I am. 1 year ago I was about to ride in an ambulance to NCH with Bryer…an admission that introduced seizures to the mix…a sick sick baby boy who was becoming sicker. It began his final march to Heaven. Tonight, I sit at NCH in 10HB room 35. Remy had some bleeding from her throat last night and this am from her tonsillectomy 15 days ago. They insisted we come to the ER. We tried to avoid. They then admitted her for evaluation this evening. So here we are. Back at NCH. The triggers of Bryer aren't as bad as the last time when we came for her surgery. But, I had some waves earlier when I went to the cafe to get lunch for Justin and I. It's so difficult to put into words. A familiar sensation that my body absorbs all over that cannot be evoked anyway else but to be in this place. Brief moments of this overtakes me and I feel like I will be heading back up to be with Bryer. But almost as quick as it comes on, it's gone again. No, it's Remy we are here for.
And I am glad... and I am sad.
Sigh. Her and I went to the 6th floor this evening where they had a dog that was visiting patients. We didn't do things like that when we were here with Bryer…obviously. As I watched Rem pet this basset's ears, I gazed out the window overlooking the green space below…two young women sat on a bench. I could see they were not employees.
I imagined their conversation.
You can only imagine, as you could never correctly guess the circumstances here. And I was reminded of when I was one of those young women and my dear friend Amber came to bring me dinner from Mohawks down the street in German Village with a pumpkin roll for dessert. We sat in the warmth, so stark from the chill of the hospital. It felt amazing. I could feel the breeze picking up loose, but greasy, pieces from my weary pony tail and swirling them around my face. We talked and ate, and I breathed for a moment.
I so enjoyed that pumpkin roll.
It was a bit of decadence in a less than decadent circumstance. It reminded me the change of seasons was upon us…something that can easily get lost within the four walls of NCH.
I felt loved.
And as quickly as I was sucked into that memory…long enough to feel the same uncertainty in the pit of my stomach... I was back in the current moment with Remy noticing the short chubbiness of this dog's legs and feet. "Remy, do you think we could paint those toenails?" Sweet girl with her snaggle tooth smile, exuberantly says, "Yes! Rainbow colors!"
There were two other patients there when we arrived, tween boys. One left shortly, but the other stayed and was accompanied by his grandpa and mother. There were 3 other volunteers and the dog owner. Remy didn't say one word, unless spoken too and only then prompted by me to be polite and answer yes or no's. She is painfully shy in those situations. Everyone else was pretty talkative. The boy's mother was talking about her son's accident. Something had fallen on his foot and broken 7 bones. He'd been here for 1 week and already had 2 surgeries with another one tomorrow. She was outspoken about her faith, and mentioned she'd include Remy in her prayers tonight. The grandpa was talking about how many grandkids he's had admitted to NCH (4) and spoke of their various reasons. Then the boy's mother mentioned they'd lost their first grandchild here being 4 months premature. So now that made 2 babies in heaven, a grandchild and her own baby she'd miscarried at 14 weeks long ago. Remy and I just sat there quietly…again she hadn't offered a word.
There was a lull in the conversation and she says quietly, "We have a baby in heaven too."
No one said anything. They probably didn't know what to say. You probably had to be there, but it was a very tender moment. My heart was breaking with pride. Proud of her confidence to say anything at all among this group of strangers and touched that she continues to remember and share her brother.
Then the mother of the boy asks, "What was their name?" Remy looks at me as if to get approval.
And then she says his name, "Bryer." And that was it. She kept stroking the dog ears:)
Overwhelmed - Headed Home Part 6 August 09 2015, 3 Comments
So back to where I left off.
September 5 - Justin came down and we stayed overnight at the hospital for the first time together. After Bryer was "stable" they took him for chest X-rays and found he had double pneumonia. Meanwhile the blood cultures they had taken a few days before came in along with the results from the fluid in his belly. He had somehow contracted Adenovirus. So, in summary, he had Enterovirus, Adenovirus and now Pneumonia. This was of course on top of seizures and everything else that was Bryer. Baby was so sick.
They told us he may not make it through the night and it might be a good idea if we both stayed. The next 24 hours would be very telling and things could turn for the worse very quickly.
Justin and I were sitting on the couch next to Bryer's bed, covered in a blanket, when Dr. H came into the room at about 9pm. It was dark except for the blue, red, green and white hues softly illuminating from his monitors. It felt so safe to have Justin beside me. Dr. H pulled up the rocking chair. Rarely did doctors do that. He had come to talk to us about some decisions. They were going to test Bryer's lungs to see if the Adenovirus was there and the cause of his pneumonia. If they found it was, it'd be a very serious situation. The only way to possibly recover from that is to be given a certain anti-viral medication (the name escapes me). It would be the only hope to save his life. However, it's potency makes it very dangerous, the most extreme of the side effects being severe damage to Bryer's kidneys (which were actually healthy). So bad, in fact, he'd be left on dialysis for the rest of his life. Dr. H wanted to talk to us about all of this and make sure we thoroughly understood. Ultimately, he'd need a decision from us that evening as they can't give that medication without parental consent. This was all IF Adenovirus was found in his lungs.
We quietly listened with intent. When done, he sat waiting for a response. I imagine there were some deep breaths and sighs exchanged between Justin and I as we took a moment to collect our thoughts. Swirling in my head...the possible benefits vs. consequences...his current quality of life...the status of his seizures which were devastating him and yet to be controlled without much hope to gain any…. Dialysis for the rest of his life on top of everything else? I just couldn't imagine wrecking his body anymore than it was already by giving him another MAJOR issue. So we could set him up to be riddled with the next virus that blew his way? This was the 6th such admission to the PICU for the kind of viruses most healthy children fight off in 1-2 days. It would almost be like sending a broken boned, smashed face, eyes swollen shut, wobbly legged, blacking-out boxer back into the ring for another round of incessant pounding. As he sits in the corner you band-aid his eyes, squirt sips of water into his mouth and give him a pat-on-the-back. And oh wait son, let me go ahead and break your good arm before I send you back out there. No, I can imagine if that was your son in the ring, all you'd want to do is say "ENOUGH", wrap your arms around him and take him HOME.
I looked at Dr. H and quietly offered something to the effect, "We want more for Bryer than this (motioning around the picu). Our faith is strong and our hope is not in this world or this temporary and fleeting life. We just want more for him, you know? My immediate inclination would be to say no to the drug." If you know me, you'd know that one of the biggest anxiety producers in my life is making decisions. Dinner menu's stress me out. But I was sure of this...and when I think back on these moments, I am shocked that I spoke first and with assurance. The only explanation is God's leading.
Then I looked at Justin. "What do you think?"
Nodding, "I completely agree." He said quietly as his gaze lifted from the floor.
For as confident as I was in what had come out of my mouth, I promise you it was still not easy to say.
This segued our conversation to one of faith and our mutual love for The Lord. He shared with us that he too was a believer. He told us it had actually come down to a decision for him to either go to seminary or to go to medical school…
And though he had chosen medicine for his career, God had prepared his heart for divine appointments such as these.
If you had been a fly on the ceiling (with spiritual vision), you'd have looked down and seen four people. A broken-hearted set of parents and a doctor huddled in the darkness of just ONE room, on just ONE floor, of just ONE children's hospital, within just ONE state, within just ONE country placed on this planet...which hangs in the vastness of the Universe…next to the crib of just ONE sick baby. And yet, from the expanse of everything God is, you'd have seen one hand reached down and delicately placed on all three of our shoulders and the other scooped gently beneath Bryer. Listening to our hushed voices over the monitor beeps, IV pumps and ventilator's whistles and whooshes, you'd have been witness to an example of God's perfectly timed and beautifully choreographed arrangement. It blows my mind to think of God being so intimately involved. But He was.
Oh He is so mighty and mysterious and incomprehensible…
Yet, I can say I know Him well...
Because He makes Himself known when you open your heart and let Him be known.
He gave us wise counsel that night and shared poignant scripture. He encouraged and reaffirmed. He showed love and compassion to our baby. We shared our hearts and he listened.
Maybe you wonder who am I referring to...
Yes, Dr. H had been a part of our team already for days, but now it had been revealed that he was also a brother. A brother who was in the trenches holding the same eternal hope. He was equipped and willing to be the hands, feet and mouthpiece of Jesus at a time we were ripe with heartache and our spirits needed ministering.
So to answer the above question is both. God was working through Dr. H in a mighty and tender way.
It was one of those times God overwhelmed us. His intimate attention. His affection. His guidance to us….just ONE handful of His children.
To be continued..
Deep and Wide August 01 2015, 4 Comments
A preface to the next few posts. Goodness, I am doing this so backwards!
This has been an extremely difficult task. Yes, emotionally it can really stir me up for hours if not days. I don't mind that part so much because I like to feel any emotion connected with Bryer. It's what have. But beyond that, there is a reason it's been a slow process to write B's story and that I haven't attempted to write THIS part out. Quite honestly, I haven't known how. How do I capture, to put it simply, "the God parts"? How does anyone do that well? But especially little old me. It seems that any attempt to articulate God's presence, soul stirrings, spirit whispers, heart holding...would feel puny in comparison to having actually been in their midst. This is not a unique predicament, I know. Perhaps it's just not possible to evoke the same stirring in someone else's mind, body and soul no matter what words you choose or how intricately you try to explain…no matter how badly you yearn for them to "get it".
It's enough to make you not even try, at least that's how I've felt. But that doubt and fear is a lying sack of a road block.
So, before I even clicked on this empty blog and stared at the blinking cursor, I had to settle something in my mind or I'd still have never written the first word. However good or bad my words flow or come across, I am choosing to entrust them to the one who is the Author of Life. To Him who had this story written far before He even breathed purpose into Bryer. My words won't change a heart anyway…He's the only one who can do that.
You don't have to look far to find stories of human suffering and grief. Sadly, the devastation of loss is all around us. I am not the first to have watched a child suffer and then die. We've all heard and read about worse situations than ours. This I know is true: there is always something worse.
It is, however, the first I've stood witness to watching my child suffer and die.
Yes, our Bryer suffered. And because he suffered, we also suffered.
But, amidst the suffering was depth.
Suffering certainly can unveil the worst in us, but also the best, leaving authenticity in its wake. Authenticity is a beautiful thing.
Suffering stripped pride and humility and opened our hand to receive community in bigger ways. Life was found wrapped in compassion exuding from a stranger and the sacrifice and relief offered from a friend or family.
Suffering whittled away at the meaningless and narrowed our focus. Simplicity and perspective is good.
In the hard places of suffering, we found pearls of truth. It's these truths which illuminated the cavernous corners of our soul and helped us to live more intentionally.
Yes, in the midst of great suffering and affliction, it's almost impossible to live wide, but oh the depths The Lord will take you if you let Him. I read this the other day, "Affliction is a bruising of a blessing, but it IS a blessing from the hand of God." It's when we share in Christ's sufferings that we find intimacy with Jesus that is impossibly sweet. Now that's going deep.
Yes, our Bryer died. But the Good News, THE NEWS, is that his story doesn't end there. In fact, he is just beginning to live! And when I think on that pearl, I can smile.
Now, it's time for our family to live more wide. To share the depths we were taken and the pearls of God's truth and promises we found while there. To be the stranger with compassion and the friend offering relief. To be the givers instead of the receivers. To meet someone else in their deep.
What I have prayed will come through Bryer's story is the thread of ETERNAL HOPE and God's ever present help in our time of trouble which was weaved both subtly and boldly throughout his life and even still. Please, it's never my intent to over dramatize, come off as holier-than-thou or heaven forbid a religious radical. It's just my attempt to capture the God parts. That's all. Goodness knows I am not holier than anybody else, and I have A LOT yet to learn and know about The Lord.
All this talk of deep and wide reminds me of one thing I have learned about God as a child and walked out with Him as an adult. His love flows deep AND wide all the time.
Deep and wide….deep and wide. Wherever you are in your life, there's a fountain flowing deep and wide.
To be continued.
Headed Home Part 5 - Belly Tap July 02 2015, 1 Comment
Monday, September 2, 2013 - He was stable and resting thanks to our medication friend named Chloral. He hadn't opened his eyes in 2.5 days, but protested with moans, howls and other shreaks. I held him today after he got the EEG leads off his and his hair washed for about 2 hrs…until my bladder was going to burst. He was snuggled right up, so perfectly nuzzled with one arm tucked between my arm-pit and side. I repeatedly ran my fingers through his thick, clean hair. Clean hair is not a given in the PICU. In fact, I often said he had the PICU stank:)
I studied his face as we rocked. "I love you, baby," I whispered. I was so happy that he was resting.
I got him situated in his bed still asleep and seized the opportunity to sneak away for a quick bite at 6:30pm. Per the usual, there was nothing really to get excited about. It was Labor Day, so in the spirit of cook outs, I chose bbq chic and a baked potato. I ate a few bites of the chicken until I tasted some gristle. Ok... thaaaat's done. I think there were maybe two other people in the whole place. I threw my picked over dinner in the trash and decided to walk across the street to CVS. I had a craving for some Flips and wanted a magazine for company. I was missing Remy and Sander terribly, so I tried calling my mom who had them at her house, but her cell phone was jacked-up. Or maybe it was just the connection, which was always less than ideal at NCH. Grr. I had enjoyed the time Justin and I spent together with Bryer earlier in the day, which was rare, but now I was lonely again. On the bright side, the warmth of outside felt nice and it was refreshing to stretch my legs.
I was never gone long, so when I made it back to his room I found him still asleep with paci-in-mouth just as I left him. Score.
The nurse was giving report to the night nurse, a guy. I didn't recognize him, but it's likely that he had Bryer at some point being his 6th admit to the PICU in 10 months. I was glad to be there through the night, especially if I was unsure of the nurse. While we typically had wonderful nurses, there were a few...
I was cold. It was always so darn cold in those rooms. I always thought I was prepared for it, but I wasn't. The green sweatshirt I was wearing must have accidentally gotten put into the dryer by my loving mother and/or my very helpful and sweet cousin, Dawn, who has been an absolute God send. Yep, the arms are now too short just like all my other long sleeve tops that get put into the dryer. Bummer. Stupid ape arms.
I figured I should try to sleep while he was content and resting as you never could predict what the night would bring, especially when the Chloral began to wear off. The time between it wearing off and the next allotted dose could be upwards of 3 hours. Which meant standing hunched over his bed patting, singing, reinserting paci or trying the rocking chair. That's why one of us always stayed. We couldn't imagine a nurse having the bandwidth to do what we would do during those hours. Sedation and pain meds were a Catch-22. While it was wonderful to see him comfortable and resting, I knew what loomed ahead. Withdrawl. We had gone through it from multiple combos of meds many times before, and it was anything but easy.
The next morning, with coffee in hand, I leaned into the door jam of the sliding glass for rounds. The attending, Dr O'Brien, said she was not comfortable with the unexplained fever Bryer still had or how his belly was so tight and distended. He tested positive for enterovirus again, so basically we were on the third week which she said was unusual. She wanted to make sure there was nothing else. Blood cultures had been sent the day before, so they would be waiting for those. She wanted an Infectious Disease consult and also ordered a Lumbar Puncture. I asked if we could coordinate with Neuro because they had mentioned a LP to check specific neuro transmitters and I only wanted him stuck once. Check, my two-cents of advocacy had been given.
I could see the question in her face. She shook her head, "I'm just concerned since he's not acting right and hasn't opened his eyes. I don't want to miss something." The plan was to begin tracking belly girth and also start TPN (nutrition through IV) to allow for gut rest. This would allow for them to regulate his electrolytes which were out of whack. They wanted to get some of the extra fluid off with lasix, but they would need to be watching BP closely because getting fluid off can cause lower BP as well. If he can't keep his BP up then they might need to transfuse blood. His chest X-ray looked hazy overall, but not a normal pattern of pneumonia…probably the extra fluid he is holding she explained. They also scheduled a follow-up ultrasound of the clot in his leg and he continued on Lovenox to help break it up. The goal would be TPN for only 2-3 days. They would continue Ativan and Chloral to keep him comfortable.
It seemed like a good plan, and we followed it for the next couple of days. However, despite even being on gut rest, his belly girth got bigger and bigger.
Bryer on September 4, 2013. You can see the fluid retention.
Dr. Hungerford, a fellow, was on rotation and had been the face-to-face contact we had interacted with the most for the past several days. He was a strawberry blonde with a scruffy beard to match. Justin and I both really liked him. He always made himself available for our questions, and I could see that he cared. He grew more concerned about Bryer's belly by Wednesday. It was large and very tight. It was decided they would take Bryer down to Interventional Radiology the following morning to get his belly tapped for fluid. 1) To relieve him and 2) To test the fluid for infection and/or determine its source. Bryer had this procedure done before in December after he coded in the NICU (another happening I plan to write about) and his belly had began accumulating ascites (fluid). It is a fairly routine and simple procedure, one that I wasn't nervous about. We decided my Mom would stay Wednesday overnight so I could be with the kids that evening and take Remy to school. Mom would accompany him down with Dr. Hungerford to his early morning procedure, and I would come straight down after I dropped off Remy.
I swiped my access card to the PICU doors upon arrival that Thursday morning. When I looked up, I saw Dr. Hungerford walking toward me with distinct purpose. I continued toward him a step quicker. When we met, he swiftly pivoted and we continued in unison towards Bryer's room.
"Bryer had more of a difficult time with the procedure than we anticipated. We're not sure. It could have been the extra sedation on board that contributed to his respiratory distress, but I don't think so as we were meticulous. I went through how this procedure would go several times last night before I went to bed and on the way in this morning. I think something else is going on. His stats started falling on the table and we had to bag him. He just got worse and we are intubating him now. I am so sorry. We were able to get the fluid that we wanted."
By now we were outside his door looking into a room of doctors and nurses. My mom came to me. Dr. Hungerford suggested we go sit in the waiting room while they got him stable.
I was stunned. It's not what I was expecting to walk into. I called Justin, then text a handful of friends and family asking for prayer and we continued to wait. After about an hour, someone came to get us and we made our way back to his room.
This might be crazy for some to hear, especially fellow parents to medically complex kiddos, but up to this point (230ish days at NCH), Bryer had never been on a ventilator. He had threatened it MANY times, but had always somehow avoided. So as I looked at him on the vent for the first time, I thought, "What now baby?" It was September 5th.
Headed Home Part 4 - Direct admit June 25 2015, 1 Comment
August 31, 2013
A follow-up blog to this.
Justin had just drove away with Bryer to bypass the ER and directly admit him to the 10th floor (Neuro). I was left with Remy and Sander who I snuggled with in our bed for a couple more hours. I know I fell hard asleep and I assume they slept as well. I can't remember all the details as to where I took the kids, but at any rate, the kids were situated and I headed for NCH.
I drove as I have so many times both hands clutched on the steering wheel...I remember being so full of fear...feeling that I didn't want to walk in and see him suffering. I felt like I was headed into battle, but I carried more weary and despair than warrior in my heart. It was a beautiful, sunny, warm day. The sun hit me square in the face, but yet I felt engulfed in such darkness. So much so, I had no words to pray. I needed to talk to somebody. My mom was sleeping in preparation for her night shift at St. Ann's Hospital, so I dialed my friend Chrissy, who lives in NC. She is a prayer warrior and Sister-in-Christ. I talked with her the whole way down updating her on the situation, what had transpired the night before, the direct admit and ALL I was feeling. I remember telling her I felt as though I was headed into hell and I didn't want to go. I certainly wasn't feeling brave or full of courage. My tank was on empty and my trusted artillery seemed to be MIA. I can't remember exactly what she said, but I know it lifted me enough to keep putting one foot in front of the other as I made my way past the security guard and onto the elevators.
I ended the call and swiped my badge to allow access into the 10th floor hallway. As I walked, I noticed a commotion outside a room about halfway down the corridor. I wasn't sure if it was Bryer's, as I hadn't been to this room yet. But my step quickened anyway. As I got closer, I could tell it was in fact his room. There were 2-3 people outside and when I turned the corner, there was a room full of doctors and nurses surrounding his bed.
"What's going on?" I stated in my unintentional Mom-has-entered-the room voice. It was obvious Justin had been so busy, he hadn't had time to warn me with even a quick text.
Our eyes met. It was a familiar exchange of helplessness. He was right in there at Bryer's side assisting the 6 others. I managed to catch Bryer between busy bodies. He was as white as snow retracting…heaving for breaths, but quickly almost panting, if that makes sense. His eyes were opened and staring blankly off to the right, rimmed in red and purple from such a horrid night of seizures and zero rest. He jerked in a repeated fashion, the seizures still had their grip. Remember, that's why we brought him in….but now it seemed we were reacting to something new. His head was turned my way and I could see the sweat on his brow.
"Oh Jesus, help him." I whispered. I had a feeling come over me…he's going to die. Right here. Right now. Because let's be realistic, HOW MUCH MORE CAN THIS BABY ENDURE! I fled to the bathroom to grab a rough piece of toilet paper and wiped the tears that had started to spill. I paused and looked into the mirror. I had seen her face before.
I stepped back into the chaos. Just in a diaper, I could visualize his g-tube site. I'd developed an eye and keen sense of awareness for that thing. It was oozing green from around the site as he simultaneously vomited green bile. It was clamped shut like what we'd do at home between feeds. It shouldn't be oozing like that, I made note. All the while, his temp is climbing and his stats were declining.
"Hey, can someone put his g-tube to drain?" I loudly asked.
"You're right," a nurse responded. It was put to drain and the oozing subsided, but the green bile was only diverted and began to quickly fill the bag.
His diapers were filling just as quickly with the same looking green ooze and they couldn't keep up. Bless Justin, he took over the rapid diaper exchanges and clean-up duty. I love that man.
I made it to the head of the bed and began to rub his hair. He needed another IV access and fast for fluids. The IV team came, but even with their expertise, they always had a difficult time with Bryer. By this time, the PICU team had come up to help transfer. I saw the familiar face of one of the fellows.
IV team lady was about to stick when the fellow said, "We need to move him first. I'd be more comfortable if he was downstairs."
"Ok but his sites will cool by the time we can get him down there," she curtly replied.
"I don't care, I want him down there now!" She barked. The IV lady backed down. They moved him and I was so glad to be on our way to the PICU.
Next came IV access. Six tries for two IV's, one landing in his belly and the other in his left arm. Not bad in comparison as sometimes it took up to 13 painstaking attempts.
The PICU always had a way of getting things under control. They managed pain, decreased his work of breathing, put him on a cooling blanket for his fevers, started fluids etc etc. They got him comfortable, for the most part, which is ALL I could ask for or wanted. Justin went home to be with the kids. It was now about 5pm. I remember sitting on the PICU couch alone taking in the happenings of the previous 48 hours... it was a jumbled mess. I had no answers yet for what was happening. We knew seizures, but now what did he have going on?
In walks my Dad. I wasn't expecting him, but he could not have come at a better time. As any frightened little girl wants her daddy, that was me. I just wanted to crawl into his big lap and let him make things better. And I am sure he felt the same.
He sat next to me on the couch and with a deep breath said, "What's going on?" The full awareness that we had JUST brought Bryer home less than 2 days earlier lingered with his question. He put his arm around me.
"Oh Dad, " I sighed as I buried into his embrace.
Headed Home Part 3 - Pit Stop June 22 2015, 0 Comments
August 24th, 2013
With sedation on board, we actually had a decent night. He slept except for when his BP was taken. Then he'd fuss, but I could soothe him back to sleep pretty quickly. He loved having his chest pat.
I got a text that Kari would be coming by mid-morning with some coffee. Praise the Lord! I was so happy to see this. It had been pretty lonely.
But at 7am, mid-morning seemed so far away, so I snuck out to get some oatmeal and a yucky, but free, coffee. It was always so interesting to see the parents venture out from their kid's room. Like walking-wounded emerging each from our own unique battlefield, we were all sleep deprived, disheveled, red and swollen eyed, wrinkled clothes or pajamas. We wore our P-badges without much notice anymore, as they pretty much became a part of us. It was almost like a little fraternity, yet no one really spoke unless in an elevator together. We might have exchanged a meek good morning with a forced grin or make the extra effort to hold the door or push the button for each other. There was just this mutual understanding. We were hurting. We were stressed. We were sad. We were tired. We were worried and confused. You didn't ask questions, but your human curiosity wondered what they were up against. You could kind of get an idea by which floor they push in the elevator. Floor 2 = bad, picu. Floor 11-12 = bad, oncology. The other floors might be more tolerable, but regardless we were all connected. Maybe it was strength in numbers? Even without knowing their exact struggle, you knew you weren't the only one.
Kari came and after some updating and visiting, we decided she'd stay and I'd go home which would allow for Justin to come down. The medication for the seizures, Sabril, had been delivered to our house and he'd be bringing it down so we could get it started. I left around 1pm.
It was a beautiful day, so I decided to take Remy and Sander to the pool, something we'd done maybe a couple times that summer. We met our friends Todd, Amber and their son James. What a vast and welcome change from the 4 walls of the PICU. It was hard not to look around in a slow motion glance taking in the life, joy, carefree fun, splashes, light conversations and WARMTH of the sun that was happening all around me. Surreal. I imagine it's similar to what a weary soldier might feel when re-acclimating to home after deployment. And if it were not for the two popsicle-stained faces that interrupted my gaze, I may not have been able to break out of the prison of guilt to join in the fun. But I did. We played hard and for a moment I didn't think about Bryer who was laying in a bed at Children's. That was until I noticed one of Justin's friend's mothers was there and I said hello. I knew she was fully aware of the situation and thinking for her (which my mom constantly warns against) I imagined she was appalled that I was there enjoying the pool with Remy and Sander instead of being at the hospital. What kind of mother was I? Back to guilt prison I went.
But the kids had a blast and for moments I did too. I reasoned that it was healthy for them to see their mom smile and to be with me having fun. Later that evening, the three of us went to Yabos Tacos with Mom and Dad and then UDF for ice cream. It was a nice change of pace. My Mom and Dad had just returned from Indiana where they attended the funeral of my childhood youth pastor. I had obviously been unable to go, but was shaken to hear of his sudden death and mourned for his wife and two high-school aged sons he left behind. She shared with me part of the message which rang truest for her. It was about living….Bruce was really living now. "And we want Bryer to finally live, really live," she said. She went on to express her anticpation for what God is going to do in our situation. She encouraged me, "We just need to keep trusting, honey. We've put Bryer in His hands and that's where he is best placed. He will not forsake us or leave us in this." Oh how true that was and would prove to be.
Before bed, I got an update from Justin. Remember the night they emergently put his central line in? They had put it into an artery instead of a vein in his leg. Thankfully, one of his PICU nurses found the mistake, but not before it had caused a major problem. Poor baby. He now had a clot in his leg which left it cold, gray and with a weak pulse. As with any clot there is always risk it could dislodge and have fatal consequences. They had to consult vascular surgeons from OSU as to what they should do and surgery was in the wings. But, with close monitoring around the clock they could see he was getting enough flow and with heparin (blood thinner) on board it was slowing improving. Surgery was thankfully avoided. However, it was enough to keep him in the PICU as heparin given to a baby is pretty serious, I learned. Eventually, we were able to switch to Lovenox which we would later need to learn how to administer by injection at home twice daily. Hemotology, another specialty was added to the list. Ugh.
The next few days were spent monitoring his leg and observing him on the new medication via EEG as he also began to recover from the enterovirus. He was moved out of the PICU "to the floor" where we spent a couple more days ... and he was less than enthused with the ipad:)
Finally, it was determined he was well enough to go home. So, later one evening we loaded a red wagon, grabbed the giant dog ballon that one of B's favorite NICU nurses had dropped by, got all his discharge instructions, injections and medications and headed out the door.
Wow, that sentence made a discharge seem WAY too simple. Ha. We got home that night, August 29th, around 10pm and were welcomed home by a trio of smiling, happy-to-have-you-back faces. Here's one:
Ahh, home. After a 10 day admission, I was so happy to have us all there together. It already felt different. I looked forward to living my new found freedom of embracing instead of chasing, gazing instead of tracking, snuggling instead of strengthening… Unbeknownst to me, it was a mere pit stop and would be Bryer's last. We'd be headed back to Nationwide Children's hospital in 36 hours.
Headed Home Part 1 - Embrace Instead of Chase June 16 2015, 0 Comments
I've been going back through my journal. Some of my writings there are lists of facts, dates, times, doctor's names and stats with short bursts of emotion and some prayer. I'm trying to go back and fill in more detail. It's quite the task, but one I am compelled to complete. I just want to get his story down. So for those interested, here is a part.
West Syndrome. Bryer has West Syndrome. We were told this yesterday (August 22, 2013). Dr. Mytzinger, Director of Infantile Spasm Clinic, delivered the news.
Let me back up.
Tuesday evening, August 20, Bryer was fussy and I could hear that he vomitted. I went in about 11:20pm and saw he had. I changed his bed, wiped him down and and got a new onesie on him. I layed him back down. He spit a tiny bit again. I got him up and decided to hold him in the rocker. He was fussy and I could tell not feeling well.
Still battling the stomach virus, I thought. He had had high fevers since Sunday night/monday morning…105 actually. We took him to the pediatrician who suspected enterovirus as Remy and Sander had just gotten over the same thing. But, we were managing and thought he was over the worst of it. Mom stayed Monday night to give us a break. It was a bad night. But, by Tuesday afternoon he seemed to be doing better. His temp was low grade.
Back to being in the rocking chair. Rocking, patting and singing, I could feel him start to heat up. Suddenly, he tensed, eyes widening in fright like he was scared out of his mind. A look I have never seen and didn't want to see again. It was followed by a cry like he was scared…almost a whimper. Then he went back to whining and fussing. Odd, I thought. His sudden jolt and terrified face had actually made my heart jump. I had never seen him do anything similar before.
A few minutes later it happened again. And again, it scared us both.
I said, "Justin did you see that?" He was busy readying his feeding pump and about to administer his midnight meds. I told him to come watch. He did it again…same thing.
"I think these are seizures or some type of spasms. Get your camera."
He captured a few of them. They seemed to increase in frequency and intensity, when all the sudden he stiffened up, his eyes widened, and he stopped breathing in my arms.
He turned blue.
Justin swiftly scooped him from me and took him to the floor to assess.
I had my phone and frantically yelled, "Do I call 911? Justin! Justin want me to call?" I wish I could say I calm and collected, but I was not.
"Just give him a second. Bryer! (pause) Bryer! (pause) Bryer!" He called to him. He laid motionless, his color was returning, but he was still dusky and blankly unresponsive.
I pressed 911 for the first time in my life. I gave our address and they were there within 2-3 minutes. I ran down to greet them at the door. I could immediately hear the sirens. We brought him down and laid him on the carpet. He was breathing, but still unresponsive and his color was bad. His O2 was in 60's. They took us, no sirens, to Children's. I rode with him in my arms on the guerny. They gave him oxygen as he stared aimlessly. About half-way there, they hit a bump and it jolted the ambulance. He let out a small erruptful cry and seemed to come out of it a bit. It was all so strange.
Bryer and I were in the ER from 1:30am-6:45am. His g-tube was leaking green bile. He started having white jelly-like stools that were so foul, something none of them had ever seen. I could get him settled with eyes closed for maybe 5 minutes at a time before he would startle or before they bugged him. There was no sleep or rest. His camo onesie was soaked with sweat, so I took it off. I changed diaper after diaper of the white jelly. After a lumbar puncture and 6 IV attempts, they decided to transfer us to T6, the Infectious Disease floor.
I was not happy about that. At all. I tried to tell them he just needs to go to the PICU. They were under the impression that the seizures where febrile. I argued that I thought they were spasms and that neuro needed to be involved. Having a child with no diagnosis, you tend to read a lot on everything. I had read of them before.
It was now Wednesday morning, August 21. T6 is in the old part of the hospital. It's the strangest feeling being there - like a different universe - or stepping back in time. I didn't feel comfortable.
I finally got ahold of Mom to update and Justin came around 9am. He had stayed at home with the kids. That's just how we rolled.
We waited for rounds which didn't happen until 12pm. Meanwhile B, dressed in a little yellow gown, lay awake and constantly moving. He was unsettled and seemed to be in pain. Justin and I left at 1:30pm so he could get the kids and I could nap.
Mom had arrived to stay. She later told me that music therapy came by. It struck me as funny and then with sweet sadness. Oh mom.
She heard music/singing coming from next door. It sounds like angels, she thought.
Curious, she peeked her head out and saw many doctors collected outside the door. Not having any concept of music therapy, she thinks, "Oh my that poor child must be dying and they brought the "angels" to sing for him/her."
A few minutes later one of them popped their head in, "Would Bryer like music therapy?"
"Heck yes!" Mom said. So three "angels", as she describes them, came in to sing. They sang Twinkle-Twinkle and something else.
My mom then asked if they take requests. Yes!
Can you sing Row Row Row your boat? Yes! And we can do it in a three part harmony!
Oh my goodness, that exchange made me laugh. But it was one of his favorite songs that I repeatedly sang, so I knew why she had requested.
Next she requested Jesus Loves Me and they sang it beautifully… just like she'd imagine angels would. Mom was overcome by it all, and buried her head into my dad and sobbed.
Later Justin returned to relieve her while I stayed with Remy and Sander. They were finally going to move forward with the EEG we had asked for. Meanwhile, he lost the one IV they got in his foot after 8 attempts. IV's for him were like gold and every time I heard he had lost one was like a sock to the stomach. They came back to try again. After one poke with no success, they said, "Sorry there is nothing more to try."
So they went off for a short EEG. When Justin and B came back, my friends Amber and Brooke had come with cookies and Jeni's ice cream. They sweetly prayed over B and encouraged Justin. They left around 9:30pm and shortly after, around 10pm, Justin then went down to Subway. He had no sooner sat down, when a Dr called him on his cell phone and said he needed to get back up to the room. "Bryer was failing," they said.
Justin ran back. They had tried 4 more times for IV with no success. He needed fluids. He was in septic shock which means his BP was low, his temperature high, his HR high and his breathing was rapid. They transferred him to the PICU to put in a central line. After he got the fluids, he did stabilize. He had still not slept and never did that night even with morphine, chloral and a psych drug. UNREAL. Justin said he fell asleep for a brief 15 min.
I got the call just after I had fallen asleep at midnight and he shared the update. He said it was bad, and I could hear the deep concern in his voice. He was waiting for them to get a line and would call me after they did to advise whether I should come or not.
In the time between Justin's calls, I have never felt so broken in spirit. Although my heart had broken several times over Bryer, it felt like the remaining pieces were shattering. I had gone through many, many situations with him, but in that moment…I had never felt so torn. Things seemed different this admission with the seizures, like maybe this was the end. I didn't know what to pray. My heart's desire was that he'd be healed. But, I was beginning to feel like I needed to pray God's will over mine. So, I prayed, "Lord have mercy on my son! Bring him comfort, peace and rest. Help me to accept your will for him and for us. Lord, prepare my heart." Those were my succinct prayers. Over and over.
I got up from bed and walked back and forth in my dark bedroom. My mind raced in a panic, "But, Lord, bring him through this so I can be with him if you choose to take him. I want to be with him!"
I called my mom. I text Kari and Chrissy for prayer. I then heard from Justin he was stable. I finally fell asleep at 3:00am and awoke to Remy standing at my bed at 7am. Sweet girl.
Remy's stay-and-play for preschool was that Thursday morning. I felt it was important for me to be there, which is was, but now I was completely stressed about being there and not with Bryer. It was an all too familiar two-way feeling I lugged everywhere I went. I got the kids up and ready, taking Sander to Kelly's, our beloved sitter. On our way there, Sander sadly said, "Me want to go to hospital. Me want to see Bryer." Remy in the way back pipes up, "Me too!" She then said something under her breath that I did not hear. I asked her to repeat it. Again couldn't hear. "I said, POOR THING!" she shouted.
Remy went with Kari after the stay-and-play. She took her and Eli to the zoo and "they had a great day" I later received via text. It was always a lift to hear things were well on the home front. I headed down to Children's. Justin needed relief. I knew the grueling night he had. I'd had some of those as well. He said Bryer yelled all night long and never slept. It was my turn to stand guard over his electrodes as he kept pulling them off. He was quite literally out of his mind and it made me sick all over to sit by and watch. Neuro didn't want sedation because it would mess up the EEG. Ok, I understood that, but it didn't make it any easier. A Neurologist came down and said they wanted to keep EEG running for another 24 hrs. UGH. They weren't catching Spasms, just abnormal EEG. They adjusted the electrodes and within 10 minutes, we got a call. They got what they needed and Neuro would be down to talk with us.
Enter Dr Mytzinger, Director of Infantile Spasm Clinic, about 5 minutes after Mom had shown up. She happened to call off work in order to come down to NCH. She came at THE right time, God's timing. Dr. M came to the door. He was a dark-haired, young handsome-ish man wearing a white coat and dress slacks. He said, "Can you come with me? Lets go talk down here. " And with that he made a motion down the hall. He led us into a family room. My legs began to shake once I sat in the chair. I knew he was going to tell us something.
"Bryer has Infantile Spasms. They are a certain type of seizures we see in children under 12 months that present as a certain rhythm on the EEG. Bryer has an underlying brain problem. We don't know what causes his brain problem, but we know the brain problem causes Infantile Spasms and a chaotic EEG. Brain problems cause Developmental Delays. Infantile Spasms and chaotic EEG also contribute to Developmental Delays. We can't fix the brain problem because we don't know what is causing it. But my job is to take the Infantile Spasms and chaotic EEG out of the equation and hopefully give him a chance to reach his full potential, whatever that is. We will do this with a medication called Sabril which we will start, August 24, once it arrives. You will administer it for 2-3 weeks during which time you will be looking visually for Spasms in Bryer. If you don't see any, then you come back to Clinic for an EEG to see if his EEG has also improved or calmed down. Basically, this will gauge whether the drug is working. If it is, we continue on for no more than 6 months. If not, we talk about next steps."
The other option he discussed for treatment was something called ACTH, a steroid. Bryer was in no condition to try this drug. It wipes out your immune system. It would have killed him.
He went on, "If you have Developmental Delay, chaotic EEG and Infantile Spasms then you are said to have West Syndrome. The prognosis isn't great."
I asked if many kids die in his clinic. "Yes, many, but not all," he answered.
I asked how the medication would help him. What could we expect to see as a result if it began to work? I was so hopeful thinking that perhaps this will help him develop. He answered, "If Bryer smiled before, he might smile a little more. If he enjoyed listening to music, he might enjoy it a little more."
This was the first "something" we had to go on. But still there was, "He has a brain problem, but we don't know what is causing the brain problem." It was never black and white with Bryer. Yet, up until that point, no Dr had ever stated that Bryer had a brain problem. There was always this hope I held, "He could improve if I do XYZ therapies for/with him." This was the first time that any expectation for him had been set or we were given a possible prognosis.
As I walked back to his room that night, I felt the weighty titles of Occupational Therapist, Physical Therapist, Audiologist, Visual Therapist and Oral Therapist shed from me with each step.
And when I stepped back into his room, I was just Mommy.
I felt free to just love him.
Of course there would be time for therapies and of course I have always loved him, but I could now leave the bulk of those therapies to the experts and I could just enjoy being his MOM. Before, should Bryer be awake and pleasant at home, I would feel immense stress to get some type of quality therapy in feeling his progress or lack there of was in my hands, because no one had told me otherwise. I wasn't giving up. No, I was just able to let go and embrace instead of chase. Embrace instead of chase; it felt so healthy.
I asked to hold him and since they had gotten what they needed on the EEG, he was sedated enough to be settled and snuggled.
We rocked in the dim light of his monitors. In peace.
Mom pulled up a chair and we talked through everything we had just heard as the tears gently fell. We talked about what it meant and how it made us feel. We talked about how much we loved this baby and how happy we were that he was resting in my arms.
Then I called Justin and told him everything.
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