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Tuesday, October 14, 2014

Welcome to the Club (You Never Wanted to Join)

I participate in a Facebook group to support other parents of children with Chromosome 6 Disorders. Last night, a mom of a newly diagnosed baby girl posted a note of thanks to us for our support, but also said, "Our daughter is only 7 weeks so I am a bit terrified when thinking into the future and the unknown. There is never anything good I read about the c6 abnormalities so I am feeling like this is a family I really don't care to be a part of."

This is my (slightly edited) response to her, and I wanted to share it with others who might be  facing this same uncertainty.

I think you'd be challenged to find any of us who wanted this. I certainly did not. My saying is "Welcome to the club you never wanted to join!" I was in your shoes nine years ago. The Boy was my first child. We knew of no issues until the day he was born. He spent 35 days in the NICU where we were told he had multiple issues and eventually a 6p24.3-pter deletion. Only college kids were on Facebook then, so this group didn't exist. I was given a diagnosis, told he was one of twelve in the world and handed a list of journal citations. They couldn't tell me anything else. They didn't know. 

I trudged through those first few months in a fog. I stayed up late attending the University of Google trying to piece together anything I could. One night I stumbled on Chromosome Disorder Outreach. It was the first time I had the possibility of connecting with others. I immediately contacted them and was given the phone number of a mom in Colorado whose child had a similar deletion to The Boy, and I called her. That conversation gave me hope for the first time.
Unfortunately those journal articles, and sometime even our parent stories lack information on the good things -- those things I heard about from the other mom and heard in her voice that day. 

They won't tell you that most children with 6p24.3-pter deletions have curly hair. Like really curly!** Most of them have huge smiles and infectious giggles. There is no scientific measurement of hug quality, but if there was, our kids would be off the charts! While a lot of our kids are not verbal, they get their point across and as you watch them figure things out, you realize they are wicked smart. Not in a traditional way, but in a "that little stinker figured out how to unlock my phone" way that makes you realize you have underestimated how smart they really are.

Are there sucky days? Yep. Lots. But I have to say that lately my sassy six-year-old typical daughter is my most challenging child. Not my developmentally delayed 6p son, and not my terrible two-year-old. Just like any family with multiple children, the award for "Who Pushes Mom's Buttons Best" changes hands pretty regularly.

I found that for me a good therapist was worth her weight in gold. I needed to mourn, but felt bad about it, so therapy was a safe place to do so. If that's not your thing, find what is. In order to take care of your kids, you have to take care of their mom. 

I corrected someone earlier today who said that God gives special children to special people. That's bullshit. We are all just ordinary people who are trying our best to do what we need to for our kids. And at this age, the thing she needs most is your love. 

So hang in there mama, you can do this, and so can she.

**There is no scientific study to show that kids with 6p24.3 predominantly have curly hair. This is purely my own observation. But wouldn't it be cool if they actually included information like this in their scary journal articles?!

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