What began as a short birthday shout out has turned into a blog post, a mighty celebration for our Mark.
Six years ago our world changed, we became a family of four and welcomed our sweet Mighty into the mix. At the time we were living with my parents, building our house and consumed by what we thought laid before us.
Pretty quickly within that first year, it happened. The milestones weren’t met, the fear crept in and we could see it coming. We faced that same dark period that parents find themselves when their child is diagnosed, and turned down an even darker path when our child acquired a rare disease diagnosis, with associated words like “no prognosis”, “severe intellectual disability” and “potentially shortened lifespan”. Our life we thought we were building seemed gone. No longer was our toughest choice between wall colors or hardwood stains.
Mark turned one, and like Leo the Lion in one of our favorite books, “he still wasn’t blooming”, then two came and just after his birthday we whisked him off to California for brain treatments in hopes that we could taste the victory demonstrated in the companies promotional videos filled with eye contact, words and hugs. My sweet boy returned the same as he had gone.
Then three and four passed with growth from the planted seeds of massive amounts of therapy, and during his fourth year his words came to life.
Then five arrived, and suddenly we felt nervous again. Five was big. Real school was scary and there was so much he still couldn’t do. But he showed us in that year that he knew his letters, numbers, their sounds and some sight words. He reached goals we never thought he would, and little by little he made progress. Music ignited his fire for learning and he began to blossom.
And now here we are. I put a giggly five year old to bed last night and was greeted with an older boy this morning, who arranged dry erasers along the covers of my bed, and snuck glances out of his periphery as I woke up and wished him a happy birthday.
It’s hard to sum up the years in a sentence or two, I left out some hardships and milestones, like a bee attack, broken arms and learning to talk, but if I had to say where we are, we have arrived in a place where we are beginning to get to know Mark.
He loves musicals, delighting in his most recent love, Mamma Mia! He has a small sprinkling of freckles across the bridge of his nose and under his eyes; a small trademark of mine that matches his sister’s. He needs a drink before he can eat. He adores the book Dear Zoo, and watches my face for my reaction as he fills in the ends of each line, anxiously awaiting my praise. He moans when he’s happy, and does the same when he’s nervous. And he checks each person’s badge when a new person arrives in his classroom and curiously peaks at their face as if to verify their ID.
He’s easily heart broken, particularly when a favorite TV character is faced with some calamity, or one of his siblings is hurt. And it’s hard to recover. He feels the feels deeply.
He has a lisp, just like his sister. And we’re thankful we’ve been given the gift of his voice. He still loves the Lumineers but his musical tastes are expanding and we’ve added ABBA to his list of favorites.
All of those things may have been there before but they were hard to see through the sea of therapy, insurance fights, school challenges, and battles within ourselves as we embraced the life we never imagined.
So as I’ve unpacked a little, moved a smidge past the grief, and as I’ve picked my head up, I’ve begun to admire the view. Welcome six year old Mighty, we are so glad you are here.