The Special Title

I know to the outsider it looks like I always was a mom to kids with special needs. I wasn’t. One day I was holding my perfectly healthy little baby and the next day I was in the back seat of a car looking at my daughter on the way home from the hospital – wondering about her chances for survival. I didn’t know then that the secret her genetics held would require her and her brother to one day face require kidney transplants. Nor did I know that both kids, because of a vision disorder would require aggressive therapy and jammed-packed special education plans to achieve some success developmentally.

Luckily I didn’t know those details. I didn’t know the heartbreak we’d survive. I didn’t know that one day I’d be able to hold my child down for labs every week, for months. I didn’t know I had what it took to get my kid through nearly dying (and wanting to die) to thriving. I didn’t know that I’d become an advocate and activist. I didn’t know that I’d be able to manage over 20 doctors and therapists while simultaneously dealing multiple testing schedules for two kids.

The title Special Needs Mom wasn’t one I asked for yet, (most days) I wear it proudly. I’m still the regular mom and wife and I’m trying to hold on to all the other parts of me that include writer, account manager, crafter, friend, sister, and daughter, too.

It’s been a struggle to find my new self over the years and I am still changing, even 10 years down the road into the special needs world. In my life, getting used to change is a requirement. I try not to get too comfortable with the person I am today because I know with certainty my kids will need a different kind of mom to face a different challenge tomorrow and yet another kind a month from now.

Accepting the fact that change will come – and usually with crisis – has been freeing for me. It means that I can be the kind of mom I need to be and want to be at any given time. It also means that I’ve acknowledged that the title Special Needs Mom is just one part of me, an important part for sure, but just a part of who I am.

Julia Roberts, www.kidneysandeyes.com
Owner and Co-founder of SfSN