Tag Archives | Down syndrome


And so, here we are. The evening before one of childhood’s greatest milestones: the first day of kindergarten. It feels a bit anti-climatic after 4 years of school. I’ve processed leaving my child in the care of others, the total fear of putting a non-verbal child on a bus. We’ve done IEPs, communication notebooks, meetings, […]

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Today is Spread the Word to End the Word Day. I first wrote this piece 2 years ago and I still haven’t come up with anything better to say about this word. It continues to be used carelessly and abundantly. It is low hanging fruit for comedians, it is a one-stop insult for people who […]

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I’m sad. Recently, an exchange of words took place on Facebook, twitter, blogs, and large, national sites like The Mighty and Huffington Post. I’m sad because this is an opportunity missed. See, people with disabilities have been harnessing the power of the internet for a long time now in hopes of getting their own words […]

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Book Review: The Parent’s Guide to Down Syndrome

I recently had the pleasure of reading The Parent’s Guide to Down Syndrome. (Amazon link here.) Full disclosure: when I first heard this project was under way, I was side-eyeing the heck out of it. Did we really need another book to give to new families? Didn’t we all get that one book at diagnosis, […]

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A Nod of Her Head

Yesterday, I opened Rowenna’s backpack and pulled out a shopping bag. Her school offers a holiday shop and her class had taken their turn. We sent Rowenna with enough to purchase one item each for hubby, Afton, and myself. No instructions other than to let her aide know that Afton is 21 months old. So […]

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Down Syndrome Awareness 2015

October is Down Syndrome Awareness Month. Last year, I wrote a post with things to be aware of beyond Down syndrome itself. You can read it here. I read through the post again and went to do some fact checking before merely re-using the same post. I was hoping to need to do a major […]

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Heart Day – 5 Years Later

Today is the 5 year anniversary of Rowenna’s open heart surgery. The longest day of my life. The hardest day of my life. The day a surgeon gave my girl a new lease on life, and rosy cheeks to boot. This is also the time I tend to sit back and take a little inventory […]

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Unexpected, Unanticipated

It’s been a strange few days. I write here for…well, to be frank, I write here for myself. I process through writing, but I make Ro’s story public in hopes that every once in a while it speaks to someone else. I write my truth here, though sometimes it is scary to share and other […]

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Five. My girl is five today. The moment I first held her is so clear in my mind. She had the roundest, rosiest cheeks. The most perfect little rosebud mouth. Itty bitty ears. A tiny swirl of hair. She was beautiful. And every day – every single day – she somehow becomes more beautiful. More […]

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Heartbreak and Lessons Learned

I toured a school for Rowenna this morning, and while I think we’ve found a good fit for next year, the failure of the current school year came careening around the corner and knocked me down. The district has been flat out wrong about a lot of things in the last few weeks. There is […]

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