16 March 2013
A support group...
One evening this week Dustin and I attended a support group meeting for parents of children with disabilities and developmental delays. I really had no clue what to expect as we made our way into town for the meeting but I had my doubts that we'd fit in. As I'd been thinking about the meeting in the days prior, I had these fleeting visions of people complaining about their lives and maybe even for there to be a counselor present.... you know, like the AA meetings I'd seen in movies. I also kind of expected it to be formal and maybe even for there to be a program of activities or various committees or something like that or maybe a fundraiser. It was nothing like I expected... it was merely a group of moms (with the exception of Dustin, the token guy of the evening) who were informally talking about what's happening with their children. There was a mixture of celebration and concern for others. We spoke of pediatricians, specialists, and insurance issues. We spoke of our children and milestones - milestones reached and those unreached and there was a certain openness, trust and honesty amongst the women that can only come from the common thread that brought them together... the individual vulnerability that comes with being "different" and the love they share for their children. There was only one other mother there of a child with Down syndrome and since we live in what is a rather small community, I'd heard her name before from the only other mother I know in our county of a child with DS. From what I've gathered, there seem to be less than a dozen or so of us in our county with children who are school age and younger. The group also consisted of mothers of children with autism spectrum disorders, a disability I've never heard of before, Kabuki Syndrome and a parent of a child with Trisomy 18 (although I thought she called it T minus 18 but I can't find anything about that online, so I think I may have misheard her). There may have be other diagnoses present, but those are the few that I remembered.
Since we've had Luke, I've been sort of proud of the fact that I haven't cried. Knowing prenatally that he would have the heart defect and DS, I just didn't know what to expect when he arrived. I've written before about how meeting him didn't feel very different from when we met our first child and I think I've just been so relived that things have been good so far that I haven't had a chance to give rise to the fears that I still have for Luke's future. When I was sharing our "story" with the group on Wednesday evening, I was on the verge of breaking down for the first time. At one point, my voice started to crack and while I'm not sure if anyone else detected it, I was close to losing it. I know it's okay to cry (believe me, I did plenty of it between when we learned of his diagnosis and when he was born!) and I'm sure I will have bad days again in the future, just like all moms do... it's just that it felt different that night with those ladies. They understand. They are a wealth of knowledge and experience.
I was so incredibly touched by the kindness of the women I met and I am so looking forward to getting to know them better. I can see myself fitting in here.... a place for "different" moms who aren't so different to come together to share ideas, learn from one another and live up to the true meaning of support.