Tuesday, February 12, 2013

Virtual [Real] Community

After Dr. Rosemond called me to tell me that Jude had Down syndrome, I turned to the Internet, of course. First, I told my friends from a due date club I had joined when pregnant with Rowena. Even now looking back over their words, I tear up. They are Jude's special aunties and for a long while they were the only support I had (H was there as always, of course). They were with me when I felt I was going to just sink into my own sadness. They reminded that there was going to be joy. They hooked me up with friends who had kids with Down syndrome. When I doubted my ability to parent Jude, they bolstered my courage. I haven't meet most of the women yet I love them dearly, like sisters. They were really my first community in this journey.

Later, it was Baby Center and the wonderful Down syndrome forums the site host. There I learned the language to talk about Jude's disability. I discovered the things I need to ask for from my doctors. I found other women who were grappling with the same emotional swings. And slowly, I was able to reach out and offer support instead of being the one who needed it, and that offering became a support for me as well. After Jude was born, I was able to turn to this group and ask questions, to ease my worries, to know that others had been there from the hard things like "Why won't she gain weight?" to the easy things like "What is a good natural lotion to use on her dry skin?" And this group morphed into a smaller group of women with new babies whom I already feel quite close to. We are all at the same place on our new journey and it's wonderful to feel their presence as I fumble through these early days.

And now I have a [real] life group. Although I'm not sure I'm the like term real anymore. In the flesh perhaps because all of the people have been real. This in the flesh group is local and the first time we meet them, I started to cry when I introduced us to them. I wasn't sad anymore but the relief of having people who just "know" what this means. The joy, the fear, the guilt...to be with them almost feels like being able to drop a mask, to lower a curtain. To meet their beautiful children, to see what the future might hold for my darling Jude is an amazing thing. Because what I see when I meet their children is that these children are their own people. They are not Down syndrome. And this is Jude's future: a path not quite laid out. Like all of us it's a path that has been marked by her culture, society and community but she will add her own details as she walks. It took a multifaceted community to show me this.

The other day, on of my online communities, someone asked us what surprised us the most upon receiving our diagnosis. And my answer was two fold. First the joy. No one told me there would be so much joy. I should have known since I experienced it with all my beasties. But the other thing was the community. I am still touched at how the Down syndrome community drew me in right away. All my emails were answered right away. It made me feel sad that I had to experience having a child with a disability to experience this amazing group of people. And then there was the community of friends and family. The people who loved us and loved Jude. The people who just said "She's beautiful." The people who said "Don't forget that there will be joy." The people who promised us "You can do this." And the people who love Jude because they love us.
Tonight Piper meet a boy about her age. A boy with Down syndrome. She told us as we walked to the car "I meet a boy. I think he has Down syndrome." And then she proceeded to tell us about how awesome at ball he was, and how he wanted to have a contest with her. Just the normal stuff a kid tells you about meeting another kid. And it hit me that this amazing community was opening up a whole new world to my kids. A world that was offering them a bigger space to expand within...a bigger community to embrace.


Amber T said...

I am having issues posting comments from my phone for some reason! I couldn't agree more about the amazing support. I may link back to this post to one I am writing. I am so happy that we have all of the online support groups. Not sure what I would do without them! I am really loving the 12/13 group :)

Ginger Stickney said...

Steal what you want! But yes I am super happy to have the group!

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