Down Syndrome Awareness: Guest Post By Melissa


If you don’t know Melissa, she writes some of the most beautiful and thought-provoking things over at The Garden of My Heart.  I’m really honored to have her as a guest poster here on my blog!

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I’m an unabashed fan of Lisa. She has an important voice in the Ds community – a voice that I often wish was a bit louder, and more often heard. A friend of mine pointed me to Lisa’s blog when I was starting to really question a few things related to Rowenna’s diagnosis and was so happy to find someone who boldly put her beliefs out there.

So when she called for volunteers to guest blog this month I jumped at the chance. And then I sat down at my computer to write about Down syndrome and came up blank.

I panicked. I retooled some drafts I had sitting around. I started a half dozen new posts, only to come up with nothing but a few vague platitudes, and nothing that sounded like me, or represented my life with my daughter.

Finally, a friend pointed out that my lack of things to say was something to talk about. And she’s absolutely right.

When my daughter was first born, I couldn’t see an end – an end to the sadness, the pain, the frustration. An end to grieving what I thought I lost. I started to blog and couldn’t imagine I would ever run out of questions to ask or statements to make about life with Down syndrome. I read all the books and read all the online forums. I lived in Down syndrome world, despite wanting my daughter’s diagnosis to be the least of her distinguishing characteristics.

But here I am and Down syndrome has become background music. It enters my life when I choose – when I read a favorite blog, when I work with her preschool teacher on an accommodation, when I raise my voice and advocate at the state capital. It doesn’t rear up anymore, or pop out when least expected. Things that used to bring me to my knees are now things to either brush off or stop to mull over, but rarely is anything the punch to the gut it used to be. Time changes my relationship to the diagnosis, and there’s no way around it – only going through it.

There are days still when I wish she could communicate a little more (words, signs, communication device, whatever she wants) because I am just dying to hear what’s on her mind and I wish she could tell me what hurts. There are a few extra doctor appointments, and definitely extra lab work that makes me worry until the results come back. I also know there will be stumbling blocks ahead – especially around life transitions like starting school.

But the day-to-day? It’s just not right in my face anymore. The things we do are run-of-the-mill. We take walks, we read books, we buy groceries. People have all but stopped asking if she has Down syndrome. Maybe I’m just not wearing it on my face anymore – that slightly strained expression I wore around that said “accept my child!” – or maybe I’ve stopped noticing if people do a double-take.

Like I said, it’s background music. I turn the volume up from time to time because I genuinely love and respect the parents I have met and want to hear about what’s happening in their lives or because my daughter occasionally presents a bit of a puzzle so I read up on what she’s doing to better understand how to support her.

So for this Down syndrome awareness month here’s what I hope to leave behind: be patient with yourself. Time changes your relationship to the diagnosis. Some days it’s loud and discordant and you can’t imagine life will ever be different; some days it’s just in the background.

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