Having a child with special needs-- especially a rare condition-- can be extremely isolating. Over the years I've found it difficult to find people who I can relate to that are able to understand our lives and don't look at us with pity or place us up on a pedestal. That's one of the reasons why networks like Hopeful Parents are so fantastic; because parents of children with special needs don't necessarily live in areas that have a large population of others going through the same sorts of issues.
However, I also found myself in recent months having a hard time separating out my own hobbies and interests from the constant role of motherhood I find myself playing. Sometimes it seems like absolutely everything I do relates in some way to parenting Connor, and it can feel like I no longer have an identity other than that of "mommy." Since working or going back to school is out of the question for me right now, I needed to find some other way to get that sense of myself back (and to get the chance to actually talk to people who are not four and a half years old and nonverbal).
So I joined a roller derby league.
For those of you not familiar with the activity, roller derby is a full contact sport on roller skates. Yes, I know it sounds a little crazy and extreme. But it's been the perfect fit for me! Practices are the evenings when Jeremy can watch the little guy, so it doesn't conflict with my parenting role. It's extremely cathartic; if I've battled with the insurance agency all day or spent hours on the phone trying to book an appointment I can take out my frustration by running into other people really really hard. Also I get to dress up in ridiculous outfits, use a cool alter ego name (I'm taking suggestions) and I can spend an entire evening skating with a group of fantastic women and not have the topic of children come up once.
I'm not suggesting that every mom of a special needs child run out and join a roller derby team (sorry dads-- roller derby mens' teams are few and far between). But I do think it's a great idea to have some sort of recreational activity in their lives if possible that doesn't involve being a parent, whether it be Bunco Night, a knitting circle or a local rugby team. I had no idea just how much I missed having a niche outside of parenthood until I went out and found myself one. If I'm having a particularly frustrating day I know that I at least have derby practice to look forward to that evening, and it keeps me refreshed and focused on the task at hand; parenting my son to the very best of my ability.
It's a lot easier to balance the stress of managing my son's care when I'm pairing it with tremendous amounts of fun!
You can find Jess daily at her blog, Connor's song.