I want to plant my lips right on that big squished glob on the sole of his shoe.
You know why?
Because there is a big squished glob on the sole of his shoe.
Which means he stepped in something.
Which means he took a step.
I have gone through dozens of pairs of shoes for him that, after he grew out of them, could have easily been returned to the store as brand new. Shoes in our special world have been decorative.
That dirty shoe sole is allowing a little ray of hope to shine in an otherwise dark cave of future unknowns. Those unknowns can sometimes take on a bleak forecast. One of those unknowns has been unsettling to me lately. That is, the feeling that as Bridger is going through his growth spurts (that will continue through his teens), the forecast of my life-long physical care of Bridger is clear.
I can’t do this.
He is large and heavy and will be larger and heavier with each day. Gains in physical ability have transitioned from the “wouldn’t that be nice if. . .” thought category to, “this has to happen.”
There are many challenges with being non-ambulatory that extend beyond the “inconvenience” of being wheelchair bound for a decade.
First, let’s talk poop: Sitting in a wheelchair all day complicates GI functioning. It causes extreme constipation and when a child is extreme low tone, bowel movements are challenging enough to pass on their own. Extreme constipation then requires special moms to add different laxatives down their child’s g-tube. Already complicated by their irregular “special” diets, the laxatives have effects that are all over the map. When a large special needs child is still in diapers with no bowel control, this makes for a punishing hazmat party for he and I both.
Walking promotes GI motility and helps food be processed through his system.
Movement also helps his severe reflux caused by his low tone. He is on a high dose of drugs to combat the reflux. Those drugs have their own bone damaging side effects. He often sleeps sitting propped up to reduce the painful effects. He vomits from the reflux during the night. He aspirates his vomit. The aspiration causes pneumonia. Severe reflux causes an aversion to eating. G-tubes aggravate reflux.
Standing and walking is also what allows your feet to form properly. In order to have a hope of walking we have to keep his feet from becoming twisted and atrophied. That is helped through his wearing of AFO’s (aka “braces”). Hard plastic things hinged at the ankle are very awkward and uncomfortable to wear. Just try keeping your foot at a 90 degree angle with your leg for a solid 15 minutes. Try moving around on the floor and getting up to a chair maintaining that same angle. Nearly impossible. Then think what that would feel like after an entire day. The plastic is also very hot and doesn’t breath. That, combined with the lack of movement in his feet, means there is no friction that comes from moving the toes. No friction + sweat = constant state of itchy, horrible athlete’s foot. Every day when his shoes come off I have to treat the sores in between each toe and help his foot to heal in the overnight break it has from his AFO’s.
Sitting in a wheelchair also causes significant spinal curvature that must be surgically corrected with the insertion of rods. That curvature, if not corrected, will also press on other organs and compromise internal systems. He already has significant curvature. Standing and walking keeps that from progressing and helps promote proper formation of the spine.
The list can go on, but I will stop here in case your ears are wilting with “special talk“.
The end story: He has to get vertical. Standing and walking has to be part of our future if Bridger is able to. We won’t know if he is able to if I don’t do every thing I can to give him the chance.
So we press on.
He is vertical and he loves it. He is proud of himself. He looks up through his labored, focused breathing and says, “Mom, I am doing it!”
He will do it.
Not only because I believe he will, and because he believes he can,
_______ … because he has to.
We desperately need a vertical perspective.