‘Tis the night before turkey day, and all my little eaters and non eater are packed quietly away in their beds, dreaming of white turkey and pumpkin pie with mile-high Reddiwhip on top. Some family members can’t make it, others haven’t made it in years, so the mix will be fun and refreshing.
But here’s the jib: whilst the folks frolic along the lines of food and drink, slump down in chairs to stare at a family member, or the boob tube—whichever is more attractive—I’ll be counting oral intake calories for Rhyse. Dividing those calories by the time of day and the amounts he needs to sustain his energy, and subtracting the volume of vomit along the way.
I’ll be chasing him with his feeding pack, and inconveniencing him as he tries to wrestle around with his oh-so-awesome Uncle Josh, whom he speaks of nearly every day of his life. And finally watching for signs of severe fatigue, and finding ways to allow him quiet time to recharge until it’s time to go home.
These aren’t things my family members think of, or even know about. The heady knowledge that must follow us every minute of our lives in order to keep our loved one with complex needs as happy and healthy as possible.
And amidst the day of Thanksgiving, I am still so overwhelmed by the love I have for my little 27-pound, 4-year-old, 36 inches short, with fiery red hair and a silly personality to boot! Just today he begged not to have his nightly shot, be plugged into his food pump, and wear his orthosis to bed…but a must is a must. And it rips my heart out every single night…not just because it’s what I have to “do” to him now, but it’s what I have to do to him for the rest of his childhood.
His life has changed me, has changed us all. And I pray that ten years down the road I can look back with graciousness, and thankfulness that we traveled this road the best we knew how—together, one day at a time.
And so Thanksgiving is over and my stomach hurts—and all are in bed. Overall today was a good day. Seeing one sister-in-law I hadn’t seen in over a year was a true blessing—we instant message nearly daily from Germany to Michigan, but it’s just not the same as getting a hug and a smile!
Dinner was a bit late, our bellies aching for that once-a-year feast. But when the dinner call came I couldn’t move from my spot. My little man, hooked up to his feeding pump and sound asleep, needed his rest. Sixteen family members dove fork tines first into the turkey and stuffing. Me, I just laid my head back on my chair and shut my eyes and smelled.
And it wasn’t the turkey I was smelling. The fragrant aroma of my four-year-old son, curled up on my lap with his feeding pump gently whirling in my ear. To me, his life means the world. The fact that the doctors were wrong—he was not terminal—three times over, as my mainstay.
Sweet little boy. I’m so thankful for you.