“Before I formed you in the womb I knew you, before you were born I set you apart…” – Jeremiah 1:15
Happy Fourth Birthday to our Liam!
Known, set apart, created in the image of God! Every day with you is the best day. Each year with you just gets better. We’re so glad we get to be your parents.
This has been, for Liam and for us as a family, a year of discovery and growth. It has been a year of learning to dig our heels firmly into the solid foundation of defiant joy.
This past year, after many appointments, specialists, and insurance battles, we finally discovered Liam’s actual diagnosis. He is one of roughly 200 other people in the world who have an extremely rare chromosome disorder called TUBA1A brain malformation spectrum disorder, also known as TUBA1A-associated tubulinopathy.
Finally having a cause, a root diagnosis that explains everything Liam has experienced and validates the challenges that have lacked understanding, has brought such relief. While Liam faces most of the typical concerns connected with his diagnosis, in some ways he is already beating the odds. There is very, very little research on this disorder (as in pretty much nothing), but we have discovered that actually frees us to help Liam blaze his own path and write his own TUBA1A story.
We’ve continued to discover, in different ways, the loneliness that can come from walking such a unique path. We’ve discovered the difficulty of medical professionals admitting they no longer know what to try and don’t have solutions. We’ve also discovered the gratitude we feel for each therapist and specialist who does not give up but comes alongside us and takes Liam on as their own. We continue to grow stronger each day in the peace that comes from total dependency on Jesus – the only One who has answers for us. We grow in awe for all Liam does and persists at and for who God has made him to be. We grow in our ability to release, to trust, to hold simultaneously grief and joy, anger and peace, concern and confidence.
We watch Liam live his life with truly defiant joy.
No seizure, hard therapy session, frustration at something his body cannot yet do, communication struggle, medical appointment, or trying mealtime ever fully brings him down. By God’s grace and the strong-willed spirit He has given him, Liam moves through each situation with determination and comes out the other side showing us what it means to defy it all with joy.
Do not misunderstand this to mean it is easy… Liam experiences every emotion, and he experiences them to their fullest. And yet, in a way that moves me to tears continually with respect and admiration, he lands consistently in a place of defiant joy.
Liam, you are…
incredibly smart, compassionate and loving, brave, determined, and full of amazing things to share with the world. You have learned to communicate in multiple ways, take in everything, and have earned the determination from your specialists that your receptive language is advanced for your age. You have fought hard to walk with your walker, can crawl anywhere you want to go, and pull up onto anything you want to get to. You have friends who love being with you and ask for you when you are not present. You continue to give hugs better than anyone I know and smile with your whole face. You still love ALL the books, stars, swings, trees, pretty much anything involving Jase and Rilee, and being outside as much as possible. You make the best elephant sound and enthusiastically say “yes” with your whole body.
And you are teaching us to grow in defiant joy.
Goodness, if Liam can do it, so can we.
I know that while our path is unique and can feel lonely, the reality is that the experiences we have – the discovery, the growth, the need to choose trust in our very good and faithful Father – are in no way unique. As you are reading this, whoever you might be and whatever your story holds, you are facing those things every single day, too. I am not one to attempt to give advice to situations I know not of, but I will tell you this and I humbly assert that it’s universal to us all: we have to learn to hold both. Joy and sorrow, peace and confusion, anger and trust. Whatever your both is. We can’t always get rid of one in favor of the other. I wish we could – I like clarity, logic, defined boxes where everything fits where it is appropriately categorized. Yet that’s just not life this side of heaven.
We can intercede before the Lord with full confidence that He IS Able, Healer, Defender, Provider, Way-Maker, and in the same confident breath declare “Your will be done”.
I know. It doesn’t make sense in my finite mind either. But it is. If Jesus could do it on our behalf, we can do it in His strength…
“And He said, Abba, Father! All things are possible for You. Take this cup away from Me. Nevertheless, not what I will, but what You will.” – Mark 14:36
I don’t know about you, but I’m so glad He did it. I’m on my knees, face on the floor, tears rolling down, grateful. And from that place, He enables us to do it too. And to do it with defiant joy.
I want to leave you with a few final things today.
If the words above make you upset or leave you with questions, send me a message. Be nice, but let’s talk about it.
If you ended up here searching around the internet for TUBA1A, please let me know. I would so love to chat with you.
If you have friends or family in your life walking the unique path of special needs and different abilities, I have some practical links to share. Be the best you can be in their life by educating yourself. The resources are abounding, but I’ll share just a few of my favorites right now.
If you’re really only here for Liam (I mean that’s mostly why I am here too, so I get it. I just know he wouldn’t mind me sharing some truth and encouragement as well!), here are some highlights from this last year leading up to FOUR!