May 13, 2018
A Piece of my Heart: Our Unexpected Journey
Start. Stop. Type words. Delete words. Think about words to type. Repeat.
That pretty much sums up my efforts to begin this blog post over the last couple months. This won’t be a write up of the details of the last card that I stamped, but instead a personal story of our family’s journey over the last year. You see, even though I write a blog for the world to read, I’m pretty private when it comes to my personal life. Especially the struggles of my personal life. So why share our story? Why open myself up to the world? Well, I’m asking myself the same thing as I continue to type words. Delete words. Think about words to type. Actually, I think there are several reasons:
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- I hope our story can be an encouragement to families who may find themselves in a similar situation days, months, even years from now.
- I believe we were created to be in relationship with each other. To be an encouragement in both the good times and the struggles. But if I’m not willing to share my struggles then I can’t expect to receive encouragement and support.
- I want to have a place where I can continue to share our story as we travel down a path that’s different from what we expected and learn to build new dreams for our life and our family and our son.
So I’m just going to start. Type words. Delete words. Think about words to type. Our story:
As many of you know, last Mother’s Day I was incredibly pregnant with our third child. We knew a little boy would be joining our family and we were excited with anticipation. Henry Joseph joined us the evening of May 25th. The birth story was uneventful (the best kind!). I was induced in the late afternoon and he was born about 3 hours later. After visits from family, we sent him to the hospital nursery in order to get some rest. We were woken in the middle of the night by one of the nurses to let us know he was having some trouble breathing. They were calling these ‘apnea episodes’ where he would stop breathing for short periods of time. He was taken to the NICU and hooked up to all the monitors, feeding tube, etc. As far as NICU stays go, our case seemed to be very routine for the doctors and nurses. We stayed for 4 days with no further apnea episodes and we were so happy to put this behind us and start our life as a family of five.
Henry was not an easy baby. Perhaps after two fairly easy babies, I was a little over-confident in my skills as a parent. I thought the third child would naturally fall into our family routines. Of course, I expected to be drop dead tired, but I didn’t expect the constant crying – always soothing, swaying, shushing, holding, rocking, etc. He rarely slept and he also spit up A LOT. We chalked it up to colic and reflux, got medicine from the doctor and continued on with the zombie phase of parenthood.
When Henry was 2 months old we were prepared for a routine checkup. Maybe we would talk about how to help him through the colic and reflux? Maybe some gas drops? Our regular pediatrician was away so we saw whoever was available. We were told Henry was measuring small in all categories, but she didn’t seem to be concerned about it so I tried to put it out of my mind. After another 3-4 weeks, I had that mother’s intuition telling me that something just wasn’t right. I requested a special appointment with our pediatrician. I’m pretty sure Jon went with me just to appease my uneasy feelings completely expecting that we’d be sent home with more pointers for colic and reflux. That wasn’t what happened and this appointment marked the true beginning of our journey.
Our doctor walked in with several printouts of Henry’s growth charts. You know those graphs that typically trend upward? Well, at a time when our baby should have been growing exponentially from week to week, we saw graphs where the line had flattened out. In my mind, we’d be trying things like supplementing my breastmilk with formula or some growth stimulating hormone I’d never heard of. Apparently, the breastmilk wasn’t the issue and there was no magic pharmaceutical to make him grow. Most concerning was the size of his head. That day he was diagnosed with microcephaly – defined as having a head size under the 3rd percentile. Microcephaly isn’t typically a diagnosis in and of itself, but instead, a red flag that something else is going on that’s restricting head growth or hindering brain development.
The next several weeks/months went by in a blur as we were sent in for an ultrasound of his brain (nothing abnormal), an appointment with a pediatric neurologist and an MRI of his brain (findings inconclusive), an appointment with the dietician at the ‘failure to thrive’ clinic ending with several blood tests for different levels that might indicate a reason for the lack of growth (all came back normal). As we were shuffled down each medical path in hopes of finding our diagnosis, it was becoming clear to all of our doctors that the next logical step would be genetic testing (a microarray of his chromosomes). You can imagine this is a very specialized field of medicine. We were given a referral to Mayo Clinic and an appointment was scheduled several months out.
The next months proved to be the most difficult. We knew he wasn’t developing normally, but we didn’t understand why. Life was a struggle as he continued to be a very poor sleeper, eat constantly, cry a lot, and never stop moving. His legs and arms were always kicking! As I rocked and shushed and swayed, I Googled EVERYTHING. Looking back I realize this was a bad idea. Google just isn’t your friend when it comes to undiagnosed medical issues (or even diagnosed medical issues for that matter!). I just couldn’t keep myself from doing whatever I could to better understand what might be going on with Henry. I had self-diagnosed him at least 4 times before our genetics appointment.
We started 2018 with a trip up north to Mayo Clinic to see the pediatric geneticist. He helped us understand what the next step in the process would be and told us that they are only able to diagnose about 30% of the cases they see. We left knowing that we may never have a diagnosis. And just as that was beginning to sink in, we received the call in March – the results of Henry’s microarray were available and they had found a genetic cause for his symptoms. We were told that he has a very rare genetic syndrome – 1 in 50,000 – called Cri du Chat (cree-du-sha). Cri du Chat means “Cry of the Cat” in French and was actually one of the diagnoses I had come across in all of my own Googling. The syndrome is marked by a high-pitched cry that sounds like a cat. At birth, the nurses all commented on Henry’s sweet kitten-like cry.
When I first heard the diagnosis from the geneticist I tried hard to take it in stride – after all, it was good to finally have a diagnosis, right? After the initial adrenaline rush and deeper research about the long-term prognosis for his syndrome, the realization of what this meant for his life and for our family hit me hard. Honestly, I hadn’t yet experienced a life-event where I felt completely helpless. I’m a problem-solver. I’m a do-er. I’m a fixer. You don’t fix genes. There’s no magic pill or surgery. The fact that I couldn’t change this with my own sheer will to help him achieve was incredibly difficult. But you know what? I’m not in control. God is in control. He’s asking me to surrender my worry, let go of my expectations, and rest in the assurance that only He knows the future. And that’s how I start each day – taking one day at a time – not looking too far into the future – resting in His peace and knowing that He’s got this.
Though I don’t know the future, here’s what I do know:
- There’s Beauty in Broken Dreams. This is the title of a book I read shortly after we received Henry’s diagnosis. It’s a handbook for the early years as a special needs parent. I learned that it’s okay to grieve my broken dreams for Henry and it will take time to build new dreams.
- Henry will be an incredible blessing to our family. He’s already opened our eyes to a whole new world. We’ve crossed paths with other wonderful families who have walked or are currently walking a similar path. We’ve met therapists, doctors, families, caseworkers, and other people who have dedicated their lives to helping and resourcing special needs children and families.
- Henry’s sisters love him so much! They’re beginning to understand what it means for Henry to have special needs. They’re so helpful with their brother and they want nothing more than to see him succeed. One of their favorite things to do is practice therapy with Henry – helping him learn to sit, put food into his mouth, and climb stairs. When he achieves one of the skills we’re working on they cheer so loudly it scares him!
- He’s such a happy boy! His smile lights up the whole room and he gives the best kisses! He’ll grab your face with both hands and leave your cheek a giant slobbery mess (but only if he really likes you… he’s choosy with his kisses!).
- We’re all going to be OK. There have certainly been days (or more technically, multiple nights in a row when Henry doesn’t sleep) when I don’t feel like we’re going to be OK. When I don’t think I can handle another day (or night). But we make it through. And then the next day comes and the next day. While we don’t know whether Henry will ever walk or talk or even what tomorrow will bring, we’re going to be OK.
I can imagine this announcement will come as a surprise to many. I know there are acquaintances, close friends, and even extended family members who were unaware of our journey. The only reason I have for that is… I just wasn’t ready. Until recently, we didn’t have any answers and I wasn’t sure where to even start the conversation. For those of you who have journeyed with us, prayed for us and for Henry, sent cards, texts, and emails of support – thank you! As I mentioned above, it’s my hope to connect with others and perhaps receive encouragement from unexpected places as we continue on this lifelong journey. If you think this might involve you in some way, please don’t hesitate to get in touch!
Thank you for reading a piece of my heart this Mother’s Day!
