Cerebral Palsy: Life After The Diagnosis

NICU - Meeting Macy Moon

Hi! I am taking over the blog today to share a bit of my story. To start at the beginning would require the longest blog post ever, one that not even my mom would get through, so to sum up: me + amazing husband + 5 years of infertility struggles = adopting the most beautiful baby girl named Macy. One day I will share how God was in every single detail of her adoption story, starting from her birth mother’s womb. Macy is now 18 months old and was recently diagnosed with Cerebral Palsy. It was a little harder for me to recognize at first but even in this part of her story, God is still in the details.

The Diagnosis

Macy was born at 29 weeks. We adopted her two weeks later and spent 5 precious (and nerve-wracking) weeks bonding with her in the NICU. Our first indication that something was wrong was during Macy’s last week there. Within hours of realizing she needed two emergency blood transfusions, we were asked to meet in a private room with the on-call doctor. The way this small NICU was set-up (thin curtains separating the “rooms”), we all knew everyone’s medical business, so Graham and I knew a closed door meeting meant bad news. We were told that Macy had a brain scan which revealed a condition called Periventrical Lukemalacia. This essentially means she has holes in her brain. At that point we knew that some developmental delays might be possible, but we were so dang optimistic (i.e. in denial) that we believed if we did enough research, prayed the right prayers, used the right essential oils (kidding but not really), and loved her well enough, she would be totally fine!

We took her to her first physical therapy session as a “precaution,” which led to another type of therapy, referrals to specialists, etc.

When love isn’t enough

As Cerebral Palsy brings with it a host of issues, we now currently have a roster of 15 doctors and therapists we see on a regular basis. Most of my time is spent schlepping Macy to therapies and repeating them at home, arguing with insurance companies, conducting in-depth research about alternative therapies, and oh yea, making sure she has fun just being a toddler. Just a sneeze from Macy can send me into a frenzy going through mental checklists received from different specialists…Is she aspirating? Is her airway clear? Is this a sign of a seizure? Will her immune system be able to fight this cold without emergency care? In the months after Macy’s initial diagnosis, I would lose sleep worrying that I hadn’t done enough for her that day or that all of my love still wasn’t enough. One night, I felt the Holy Spirit gently say “Your love is NOT enough. But God’s is.” Oh, what a beautiful feeling surrender is. What a relief to know my child’s well-being isn’t dependent on my flimsy version of earthly love.

“There is no greater discovery than seeing God as the author of your destiny.” – Ravi Zacharias  

God’s grace is always enough

When we finally received Macy’s official diagnosis of Cerebral Palsy, I wasn’t surprised, just devastated. I didn’t want my beautiful, long-awaited child to experience any type of hardship, let alone a lifelong one. I once heard a friend (who at the time was struggling with infertility) explain grief as something you need to give into until it releases you. For about two weeks, I cried about the unfairness of the situation, raged at a God who felt absent, and wallowed in unmet expectations (read more about dealing with unmet expectations here and grief here). But here’s the thing I’ve learned about being a Christian in the midst of grief: God’s grace is a legit thing. As your struggle increases, so does the depth of His grace. You eventually stop crying every day. You recalibrate. You find a new normal. You receive even more grace. You recognize that you just went through something hard and you survived it, and what’s more, you were strengthened and refined by it.

1 Thessalonians 5:16-18 says: Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you.

I’ve learned that finding joy in all situations isn’t hard when I train my mind and heart to seek it out every day. In fact, I am probably more joyful and content now then I was before this journey started. There are some extremely hard days and others bursting with happiness, as I am sure is true for every parent, but I pray that I as I continue to lean in to God’s purposes for both my daughter and me, the posture of my heart will be the same through both.Macy Moon Smiling

*The black and white photo was captured on the day we met Macy by our dear friends: @bradandjen