Just do what you have to do

I don’t consider us a disabled family. Don’t get me wrong, my son has cerebral palsy spastic quadriplegia and is developmentally delayed so, technically, we are a family with a disability. Certainly that’s how the many people view us.

I’m not going to say that “disabled” is a mindset. There are many things my son cannot do and there are many things he will never be able to do. Having a disabled family member has a very real impact on everyone else in the family that you can’t avoid. But how you choose to deal with the reality of your situation is something you can control.

I’m writing this with the hindsight of more than 14 years. For the first year of Deane’s life, both my husband and I walked around in a daze. There were a lot of tears and many unspoken fears. There were the appointments with the premature baby clinic where, despite any developments we were so proud of, they documented how far behind he was on the traditional milestones. I didn’t leave one of those appointments without dissolving into tears.

But slowly, that haze began to lift. Deane was a cheerful child whom we adored. Our friends and families rallied around and accepted Deane into their lives.

I can’t say when it happened. It certainly wasn’t a conscious decision. We didn’t discuss it. At some point, we realized that we had to be as “normal” as possible to give Deane – and each of us – the best possible life. To do that, we would have to adapt many things including our schedules, our house, our careers.

There was no point in wishing things were otherwise, in resenting the adjustments we had to make. Like all parents, we loved our child and wanted the best for him. You just do what you have to do.

That’s not to say there weren’t more tears or fears. We were not always so level headed and calm about it. There have been some awful days and many frustrations along the way. But there has been way more learning and loving.

This blog is our contribution to other parents who have children who don’t move, behave or look the same as “other kids.” The more we connect, communicate and share the easier it is. We are not alone on our journeys.