Williams Syndrome Wednesday: Finding ‘our people’

by , on
Sep 19, 2013

Mommy groups filled with typical mommies caring for typical babies can feel very isolating. I’ve learned when you’re parenting a child with a developmental delay caused by a genetic issue, it’s really hard to relate. In addition to the day-to-day feeling that you can’t keep up with the conversations about what’s happening with the babies that one-by-one pass yours by, there’s the uncertain future that makes you, and others, uncomfortable. For instance, you often hear, I’m letting my baby XXX (co-sleep, have a pacifier, potty-train when ready, skip tummy time) because no one every goes to university (sleeping in their parents bed, with a paci, unpotty trained, unable to push up on their tummy). Which is all well and good…unless you’re uncertain if your child will be capable of going to university at all.

Talk about a mommy-group mega-downer.

But finding other mommies of small kids dealing with genetic issues and resulting delays is a challenge. Until it’s not. This past week, Obi and I started going to a baby group that incorporates typical and special needs kids and their parents. I was a bit nervous walking in last week but I quickly settled in and found some moms that are going through a lot of the same stuff I’ve been dealing with. Finally! Someone who ‘gets’ where Obi and I are at.

Of course, with those who ‘get’ often comes those who should ‘get lost’. There was one more mom sitting in our little circle amid a room full of about 20 parent & baby combos. This woman also had a story. Her first child (not the one in the group) was a micro preemie. He spent weeks and months in the NICU, was touch and go for quite a while and now is “a perfectly healthy and happy 5 year old, reading at a grade 2!!! level”. All this was delivered in a manner that made it sound like her son was now typical and someday ours would be too.

Now I get that she’s been through a lot. Nobody gets out of the NICU unscathed. And it sounds like she had quite a ride.  But, there’s a time when you need to find your people. And 3 moms with kids with chromosomal abnormalities all talking about the uncertainties, isolation and fear that comes with this type of diagnosis…we’re not your people. Once you got to the “everything is great and now my kid is 2 years ahead” part you self identified as one of the mom’s who just can’t get what we’re going through in a few minutes on some squishy floor mats at a mom’s group.

I know you don’t mean too, but you kind of make us feel bad. And it seems just a little like you need to try and make us feel better to make yourself feel better. Which also isn’t helping.

I’m all for talking about “motherhood” as a concept. I’m all for hearing about your child’s personality or about how you feel about going back to work. But I don’t want to hear patronizing comments about how Obi will ‘catch up soon.’ I know that sounds bitchy, but I just don’t. Especially when they cut off another mom who has been as desperate to talk to someone else who got a life changing diagnosis as I am.

Stay. Listen. Learn. Smile. Nod. Compliment the cuteness of our kids. But if you can’t keep your awesomeness to yourself, keep moving to the other side of the room where all the kids that are ‘younger than ours but are crawling around like champs’ are playing. Go play my-kid-is-better-than-your-kid with them.

I’ve found my people. And I’d really, really prefer you don’t ruin this for me. For me and my people.

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