Henry was born with limb difference- he does not have full arms or legs. Henry doesn’t recognize his uniqueness, and he has certainly never let it stop him from doing things he wants. As his parents, we’ve always embraced and encouraged his persistence, determination and independence. We have modified everything that we can in and outside of our home to assist Henry to this point.
One of my favorite memories from his infancy is when his dad, noticing Henry had only a couple “traditional” toys to play with so he built him an obstacle course from sofa cushions and pillows. Henry, no longer an infant, now needs modifications on a much grander scale, which of course brings more cost and specific technical skills. We always explore the resources we have, such as insurance, to cover the modifications he needs. Sadly, since Henry’s medical condition is very rare and atypical, we are more often than not met with lengthy delays and repeated rejections.
For example, we most recently had to battle the insurance company for many months to get him a wheelchair! We have a modest dual income household that serves our family of nine, including two other high medical needs children. As a family we try to do the best we can to prioritize Henry’s needs above most other things, oftentimes they even take the forefront to things such as bills and important house repairs if that’s what needs to happen.
Even still, some projects are beyond our means.
Currently, Henry doesn’t even have a bathroom that he can use by himself. He requires complete assistance with both toileting and bathing. And our house doesn’t have flooring that he can safely use to get from room to room. Projects like these are out of our budget and skill-set, so they’ve just taken a permanent backseat.
Henry is an amazing, little soul. He lights up every room he enters, his laughter is pure joy. He is never defeated, he is determined, resourceful and strong willed. He always finds a way to achieve his goal. He doesn’t only have unlimited grace for himself, he has it for everyone around him. He is a cheerleader for all those he encounters, and can often be heard saying things like, good job, you’ve got it, don’t worry just keep trying, I will help you. Henry doesn’t quite see his differences yet, he believes he can do anything he puts his mind to. We don’t want that to ever change.