The Voice of Truth September 11 2017, 15 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.
Arrow's name / Cincy update December 27 2015, 15 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, 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.