I’ve mentioned before that it’s been difficult for my wife and me to come into contact with others who are parents of children with 1p36 deletions. Try as we may, there just aren’t very many of us out there. Parents whose children have other conditions usually have organized support groups to fall back on in times of need. But there’s nothing like that for us 1p36’ers. We quite often just get by on our own. At least that’s how it was for my wife and me, until about a month ago.
We received a letter from the University of Utah Department of Medical Genetics. The letter described another family with a daughter with 1p36 deletion syndrome and it included contact information. It said they were interested in talking with other parents whose children were in the same situation. So while I’ve been shy and just sharing my daughter’s story here online, this family was brave enough to have the folks at the hospital send out their phone number in the hopes of talking with other parents like them. My wife and I were excited to talk to someone else like us.
It took a couple of weeks to get up the courage to call, but we finally did. Since then, my wife and the mother of this little girl in another state have shared some incredible conversations. They’ve talked all about their experiences for literally hours. As it turns out this other family’s experience parallels my own family’s so closely it’s almost frightening. We’ve been through so many of the same things. It’s been so helpful to share stories, suggestions and comfort with each other. It feels so good to not be alone.
We plan to keep in close contact and share our experiences. It’s amazing how many “me too” moments we’ve had already. Knowing there’s someone else out there makes the load a little easier to bear.
On a related note, I’ve searched around the web for a good discussion forum for parents of children with 1p36 deletions and haven’t seen anything that’s currently active. It’s kind of disappointing, but if parents have things they’d like to talk about they’re welcome to post replies here on my blog and talk about anything that’s related. I really do believe that as a parent of a disabled child, communication with doctors and other parents leads to better care for our little ones and for us as parents too!