Yesterday, Max had the best bike ride of his life. He rode his adaptive trike (a Triaid TMX) down the driveway. Then he cruised up and down our street, steering like a pro, doing turns and K-turns and masterfully navigating bumps on the sidewalk.
Last weekend, Max had the best bike ride of his life. He rode his adaptive trike down the driveway. Then he cruised up and down our street, steering like a pro, doing turns and K-turns and masterfully navigating bumps on the sidewalk.
Whenever Max rides his bike, I think it is the best bike ride of his life. Because every single time, I am awed by his riding. Every single time I think, Whoa, that is amazing.
It's not that I don't believe he is capable. My heart and mind are scarred from the NICU doctor who warned us about all the stuff for which Max was at risk. He might not walk or talk. He could have cognitive impairment. He could have vision and hearing problems. Not once did that man say anything positive, until I complained to the NICU social worker. And it was only then that he acknowledged that infant's brains are malleable ("plastic," they call it).
Doctors are supposed to uphold the "First do no harm" tenet (actually not part of their oath, but still a guiding principle). They should also be careful not to do emotional harm of the kind I and other parents of kids with special needs have suffered. Some of these MDs are the grim reapers of modern-day medicine. If there's one thing parents of kids with medical conditions and disabilities need, it's hope. Not false promises, but some positives to cling to.
For years after Max was born, I fantasized about bringing him back to that doctor and triumphantly saying: SEE? YOU WERE WRONG. Max has his challenges, sure, but he sure isn't the tragedy that doctor envisioned. A couple of months ago, I found out that the doctor had passed away. Mostly, I was disappointed that he'd never eat his words.
Yet for all the despair that doctor instilled in me, there's this: I never take for granted what Max has accomplished. I will probably always marvel at Max's movements, the ones he wasn't supposed to do.
The next bike ride will be the best bike ride of his life, too.
If you ever have time to read, I think you would enjoy Cheryl Mattingly's The Paradox of Hope. I think it would be relatable for you, as well as shed some light on the doctors point of view.
ReplyDeleteI usually read fiction because I don't have all the much time to read and typically just want escapism. That said, I just looked this up and it sounds really powerful. Thank you for the recommendation.
DeleteI hate it when doctors make predictions about a child's future but they don't know what the future holds.
ReplyDeleteAnd so much is in phrasing and presentation...
ReplyDelete"He may never walk or talk" could just as easily be "Walking and talking may be difficult, but early intervention is key, and we've seen kids like Max make remarkable strides"
EXACTLY.
DeleteOh how I love this. Because we JUST got Sammie her first adaptive bike that she can pedal on her own (after many attempts to just "adapt" conventional bikes) and EVERY TIME I run after her, marveling. And EVERY TIME, she throws her hands up in the air as she pedals down the street with her little sister next to her (we are working on steering ;o)) and screams "this is so much fun!" And EVERY TIME my heart darn near bursts. Because this is the FIRST motor "thing" that Sammie and her sister can truly, truly do together. That leaves little Mia trailing after her big sister. It's amazing. So not only is every bike ride her best, I swear, every bike ride is one of the best moments of MY LIFE.
ReplyDelete"Oh doctors are wrong all the time!" Said to me by...wait for it...a doctor.
ReplyDeleteStill can't ride a bike...
ReplyDeleteHello Ellen! We are looking into a new bike for our guy and I am wondering how you like the Triad TMX. We currently have a Freedom Concepts model, which Simon loves to ride, but which is getting a bit worse for wear. It is also extremely heavy, difficult to pedal, and doesn't fold down at all for travel (and I would love a folding model so we could take him to a trail). Any info you have would be great. I love seeing Max's happy face -- and I would love to see the same smile on our Simon. Thank you!
ReplyDeleteLaura, it is an outstanding bike! It has held up well and Max finds it easy to pedal, although that can vary from kid to kid. Can Simon's physical therapist weigh in? Is there one for Simon to trial at school? Note, our model doesn't fold.
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