A fellow SB mama (mother of a child born with Spina Bifida) recently posted a video on Facebook of her 3-year-old little guy chanting into the camera: "I can do anything! It might be a little different, but I can do it!" This is so great and so cute, but is it true? I struggle with all the can'ts my boys face every day. It's sort of like trying to put yourself to sleep -- the more you tell yourself just to relax and not think about how late it's getting, the harder it is to drift off.
Playgrounds. Easter egg hunts. Bouncy houses. Swimming pools. Road trips. Buying shoes. Public bathrooms. Hot surfaces. Narrow hallways. Small vehicles. Grass. Sand. Carpet. Stairs. Thresholds. Tall tables. Inclines. T-ball. Childcare.
These are everyday things for most families, but they can make an SB parent fret; they feel like walls, obstacles, limits: How will we include them without making them the center of attention? How will we change him privately if the change table is right in the middle of the restroom, not in a stall? Who can help us so we can participate? Do we need to explain all their needs or do we want people to just treat them normally? Will Ellie be ok fending for herself while I try to keep up with the boys? Is it even safe for us to be lifting and carrying these boys around? Will we need to bring the all-terrain stroller? Will the boys be obedient enough to manage this in their wheelchairs? How do I explain to everyone else, and to them, why we have to do things differently?
Sometimes I worry about these kinds of things, and then I worry that I'm worrying about them, since all that worry might rub off on the boys and make them grow up feeling sorry for themselves.
When I look at these little challenges, I know I should be thankful -- not very many years ago, people living with disabilites were institutionalized, were completely homebound, and didn't have laws that demanded their access to public places. I need to get my stinking act together for the sake of my family. I need to choose a mantra. Which one do you like?
1. We might have to plan, adapt, and be patient, but we must play, live, go, be, and do out in the community.
2. We all deserve access, privacy, and independence, even in a wheelchair.
3. Nobody ever said life would be easy, but we choose joy.
4. Some people are alone in their struggles. We are blessed; we have each other.
5. Yes, we can do it. We might do it a little differently, but we can do it.
(With a little help)