Living against the Odds

My son is a special needs child. He didn’t get enough oxygen during his delivery, causing brain damage that left him physically 100% incapacitated. Mentally he is 100% spot on, which is of course a blessing and a curse of sorts.

Any time a child of non-typical development comes along, be it for genetic reasons, an illness that caused injury or other circumstances, the medical field will verbalize expressions of hope. As one of the physicians told me when my son was still an infant:

” We don’t want the parents to give up on the child”.

Again, this is a blessing but also a curse of sorts. It can push you into fighting a “hopeless” battle. And I don’t say that lightly. The battle being that you as the parent, and society as a whole is trying to shape these children as much into society’s acceptable form of normal. I know there’s all these positive stories out there about children overcoming special needs and being “successful” in society. I don’t have any statistics, but children and people with more severe dis-abilities generally don’t get a public parade. It’s an all consuming effort to take care and provide for them over the course of each day that it’s simply not possible to force them to participate in a lot of common daily activities. Shopping, going to the movies, trips to games or other outings,

Holiday celebrations that involve crowds and noises etc.

As my friend so well stated on her daughter’s 17 birthday:” I kept thinking about how she should be getting her driver’s license. I just want her to have “normal” experiences as others her age. But by now I know this is not her life.”

It took me a long, long time to walk off the battlefield of a senseless war. The war of fighting against who my son was born to be. Attempting to push him into overcoming something that is not meant to overcome. Accepting that he is just fine the way he is. I stopped trying to make him fit into the world and instead have learned to make the world fit around him.