Sweet Redemption June 16 2018, 8 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...
Baby Largent News December 02 2015, 21 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.
Headed Home Part 1 - Embrace Instead of Chase June 16 2015, 6 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.
Joy into my darkness - Headed Home Part 2 August 30 2014, 2 Comments
I apologize ahead of time for the errors, the going back and forth between tenses and all that stuff. It is what it is ..as I looked back on the happenings 1 year ago today. August 30, 2013
August 30, 2013 - We had just got home at 10:30pm the night before from a 10 day picu/neuro admission. I was bone aching tired, but we were home under one roof. All a mama wants. Remy went to play with her friend, Christine. I decided to take Sander on a little date to Target, then a hair cut and Five Guys for lunch, his favorite. It had been a few days since I spent proper time with him. I was missing him and he was missing his mama. Oh, the joy that boy brings! Bryer really hadn't slept much the night before, but seemed content to nap on the ottoman for a bit. We had a new seizure med, Sabril, we were trying out. Also new to his already lengthy routine was twice daily Lovenox injections for a blood clot in his leg - a result of the misplacement of a central line into his artery and not into his vein. Needless to say, little man kept us busy, but it was so good to be home. Did I say that already?!?
Mom came over that evening to help as it was always chaotic, but especially soon after a discharge as we fumbled to settle back into routine. She loved giving Bryer baths in the hospital and at home. It was their special time together. She is a RN by trade and has been for 30 + years. She knows what she's doing and is good at it. Not to mention, she loved and still loves Bryer deeply and I know he felt it...most especially during those hair washes. I didn't worry when I left him in her care. So, as she gave him his last bath in our sink, I took the kids out to play. It was a beautiful evening.
Really, you took Sander on a date all day and then took them out to play that night? That seems weird when you have such a sick and fragile baby that just came home from the hospital. But the reality is, yes. The pendulum swing between the world of Bryer and the world of Remy/Sander often blew my mind, but even more so as I look back on it. Like being home with R & S and mc'ing a full-on stuffed animal fashion show with run way, spectators, music and twirls... as Justin sat with B on a ventilator. Then me with Bryer during a significant brain MRI also while on a ventilator, all the while getting video from Justin of Remy riding her bike without training wheels for the first time. Me leaving B at the hospital to get Remy so we can go pick out her first pair of soccer cleats. She beamed. I sent Justin the picture. Me sitting in a darkened picu room eating a bag of peanut m&m's actually feeling sick-for-home, so I FaceTime the kids to say goodnight…they are full of smiles, I love yous, freshly bathed and all PJ'ed up ready for bed. I say goodbye and look at my just-in-a-diaper, all tubed up, unbathed, deteriorating baby boy. Not sure if I am painting the picture accurately, but swinging back and forth between the two worlds was somewhat surreal. I digress..
Back to August 30. We had all settled in for the night. Bryer had fallen asleep on his blanket upon the ottoman and Mom said she would sleep on the couch next to him. He slept from 8pm-12am. Upon waking, he began seizing every 4-5 seconds. Nothing was helping or calming him. I came down and together we sat for 3 hours. We thought it was the clusters he had experienced before. But no, it was different. There was no letting up. We tried it all. Holding him didn't help…almost made it worse. He was sweating. Our body heat made him hotter. We decided to give him another dose of Sabril. Justin came down around 4am. We called the on-call neuro dr. He gave us a script for distat which Justin left immediately to get. He returned an hour later and Mom gave it to B as a suppository. We waited.
Those dark hours from 12am-6:30am... passing him back and forth between Mom and I. Rocking, patting, singing, praying, laying on ottoman, trying left side, then his right side. More patting, rubbing, stroking his hair, praying, singing….SEIZING without cease. He screams, whimpers and moans inbetween. The beads of sweat upon his brow. Eyes WIDE like he's frightened. Sweat soaked onesie after sweat soaked onsie. We were doing anything we could think of to help. But nothing did. Huddled around the ottoman, these were some of the worst moments of my life.
The other two kids slept peacefully upstairs as we waged hell-like war downstairs. I am not exaggerating. If I were to imagine what hell is like, it would consist of watching your child struggling and suffering and being completely helpless to do anything at all. Counting on the extra dose of sabril. Nothing. Counting on administering distat….still nothing. Soon, I hear little feet on the stairs. I look up and see Remy peering through the banister rails. My tender-hearted girl. Before I could order her back to bed, she scurries down and glues herself to my side. Sander soon follows with Tiger, his go to blanket, in tow. It is about 5:30am. Sigh. I remember so clearly the feeling of despair, and I could see it on the faces surrounding Bryer as he lay seizing on the ottoman. My mom was taking a turn at trying to console and comfort, hunched over his little body, singing in his ear.
"Ok, this disat isn't working," I say. I stand up.
It came decision time, something we had wearily encountered many times before with Bryer. We HATED making the decision to go. To go and to admit. My heart completely deflated…a familiar heaviness sat upon my chest. Anxiety churned through my veins. I felt desperate, stomped on, so utterly grieved. My eyes were dry and burning. And although we had just brought him home 36 hrs earlier, we knew we had to go back.
"Is there anyway we can bypass the ER?? There's got to be a better way," I plead.
So, we call the neurologist and he arranges for a direct admit to the 10th floor - neuro. That makes me feel a little better.
"I've got to get these kids back in bed. Justin, I can't go. I just can't watch anymore tonight. I will get in bed with these two and come relieve you later today. I just… can't, " I say through tears.
Justin, with quiet resolve, rises to the occasion. I get the carseat and gather his belongings. I make sure we are up to speed on meds and his feeds are on track etc. I get Cow and some paci's. You know when you are packing up your baby for the sitter? Kind of like that, but way different. And with that, I send Bryer and Justin to Children's for what would be his last admission. Mom follows behind and heads home for some well earned rest.
The door closes. The pendulum swings.
I turn around and look at my 4 and 2 year old sitting on the couch. Dawn is just peeking through the windows. It is quiet. I go to them, picking up Sander and taking Remy's hand, we walk upstairs and into my room. I lay in-between to prevent a squabble and one nuzzles in deep on each side of me. I feel overwhelming peace, love and joy as I lay there looking up at the ceiling. Praise you, Lord. He has a way of piercing through the darkness when I need it the most. This was one of those moments. It's true that mother's have limitless capacity for love, for I poured as much love out on them in that cuddly early morning snuggle as I had all night to Bryer. I love my kids intensely. All three of them. But, I will be brutally honest, I was relieved to be settled between them rather than physically and mentally suiting up to forge into the hell of suffering with Bryer. If I could just escape for a couple of hours...I was so completely exhausted. I think I only got an "Oh Lord, help…" before I fell asleep.
I think back on that moment with mixed emotions of guilt and second-guessing of my choice not to go that morning. But, I am reminded of the scripture Matthew 11:28 "Come to me all who are weary and heavy-laden. I will give you rest" and also Ephesians 3:20 "Now to Him who is able to do far more abundantly beyond all that we ask or think, according to the power that works within us.."
It was obvious I was weary and needed rest. But, beyond rest, He even managed to deliver a shot of pure joy into my darkness. Maybe it's just me since I'm the one who experienced it, but the fact that I can even write of the joy, peace and love I received on a night like that, is pretty darn amazing. It is a testament to God's goodness and continued presence on our journey with Bryer. He was with me.
After a few hours of rest, I woke up and made arrangements for the kids. Then I headed down to relieve Justin. What I walked into, well, that's perhaps another blog post.