Children with special needs cause suffering to their parents, their communities, and to society. Children with special needs are expensive to personal pocketbooks, insurance companies, and local and federal governments. Children with special needs endure hardship on their own that make their lives not worth it.
I read these words in online articles. I heard these words grumbled under leery onlooker’s breaths. I denied these opinions forcefully imposed by outside caretakers.
These words were especially terrifying 3 years ago while I walked the Baptist Labor & Delivery hallways trying to speed Annie’s entrance. I almost tried to hide my excitement.
-Wasn’t I naive for wanting my broken baby?
-Weren’t we crazy for choosing life?
-Would I ever get to hold her and keep her as mine?
-Would she thank us for fighting for her or live ashamed of her limitations and imperfections?
The haze of questions stopped swirling the second I met Annie.
Still, swirling aside, it was clear the words were right the first time I held her: tangled in wires sick as could be. The pain in a mother’s heart and the hunger growing in her belly couldn’t be denied.
She wasn’t allowed to be fed until after her open heart surgery, which happened at 5 days old.
But then she got better see? Her tummy welcomed its first milk when she was 8 days old. And we were one big happy family…
…Who was forgetting the fear. Loving instead. Forgetting the “what ifs.” Believing instead.
The bills came. And the words were true: children with special needs are expensive to personal pocketbooks. And expensive to communities who have loved us so much to drop anonymous checks by the athletic office, to give a prayerful donation through our Go Fund Me, to bring over a hug and money-filled handshake.
At 15 weeks old, Annie underwent another open heart surgery. The words were true: children endure hardship on their own. 60% chance of surviving the operation didn’t mean anything to a little baby living out God’s miraculous plan.
The first few months of Annie’s life proved all these terrifying details. But there’s one thing about those words and opinions that was sorely wrong. Annie’s life has been worth living.
I’m certain this tiny smiler would agree.
I know this bedhead wouldn’t argue.
I assure you this snocone slurper is satisfied.
I know this cookie baker is confident.
This uncle snuggler is sure. So is the uncle.
This sister wrestler
Is defying all the odds and declaring all God’s glory.
Our appointment in June is coming. Much too fast. Much too certain. Much too soon. And we don’t know how it ends.
Some days lately I find myself lost in the haze.
I know that in a few weeks I’ll be scared to death sitting in some waiting room. But in that moment I am going to close my eyes and remember all the TODAYS I’m getting with Annie.
Happy 3rd birthday to our miracle baby who reminds us every day that life is always worth it.