“Strength does not come from physical capacity. It comes from an indomitable will.”
~ Mahatma Gandhi
Super Luke is now one month into his post-op metamorphosis. His Buzz Lightyear-style brace/fixer has made it relatively easy to care for him during recovery, and we hope he’ll be cleared for brace removal and weight bearing next week. (!!!) Just like regular parenthood, the weeks are flying by, but the days (and sometimes hours) are long.
Luke is, 97% of the time, pretty much himself during this adventure. He is funny, inquisitive, silly, imaginative, sweet, and can be a bit of a dictator. (It’s okay; I can admit it…we are frighteningly similar.) Overall, we’re so proud of him and his attitude. He rolled well with the chaos of surgery and a three night hospital stay, despite all the poking, prodding, medicine, and tubes that were included.
Although he is frustrated that he cannot do many things for himself, he’s handling his King of the Couch role well by overdosing on Wild Kratts, Legos, and M&Ms. I ration the M&Ms and screen time (sort of), but the bricks are everywhere. (If you stop by and notice our house to be entirely composed of Lego bricks, don’t be surprised!) It’s tempting to compare his recovery to caring for a newborn, but he does feed himself, communicate clearly his bathroom needs, self-entertain sometimes, and sleep soundly. Actually we’re all sleeping pretty heavily, thankfully.
Once again we are somehow shocked that I/we cannot seem to accomplish much more in a day than the basic business of daily life. John asked me recently, “Have you blogged yet about how we thought we’d get all these little projects done around the house/yard during Luke’s recovery?” We were clueless about how physically tiring it would be to transfer a 40+ pound preschooler from bed to wheelchair to couch to potty and back and forth each day on top of corralling our 30 pound explorer Joel and his many accessories.
But here’s the thing…little brother is not going to be ignored during this hectic phase. Nope, Super Joel is on fire. In the past month, he has started to self-propel his own wheels constantly, utilize three separate communication switches at a time (this is HUGE!), and push up to self-sit like a boss!!! He has also (with assistance) attempted to climb up on the couch to get to Luke and more consistently shouts “bwa-a” if separated from big bro. Affectionately, we also nicknamed him the Brown-Eyed Menace because of his typical toddler-like marauding through the house to overturn stools, move chairs, and upend/dismantle all toys. His inner Evel Knieval resurfaced last week when he rolled away from me in a parking lot at Children’s and caught a slight incline that built up his speed and flipped his wheelchair forward onto a curb before I could reach him. He was fine. I cried the rest of the day. And now I will never turn my head again without locking his wheels.
The creative genius volunteers and staff at May We Help designed and built a tray for Joel that allows him to simultaneously access switches and reach/maneuver his wheels. It’s amazing, and we are so grateful to Mr. Ray’s team who turned it out in a month flat. Joel’s preschool SLP actually did a happy dance when she first saw it! What a gift this organization is to our community!!!
We are so overwhelmed and humbled by the kindness shown to us during this crazy time. Many, many thanks to our village who have made survival possible and downright fun! xoxo