March 21 is World Down Syndrome Day. Some celebrated by wearing “wacky” socks as a conversation starter. Some performed random acts of kindness, leaving behind little calling cards describing the purpose of WDSD. Others participated in the Day in the Life campaign, an ongoing project collecting stories about life with Down syndrome, preferably in the […]
End the Word
Today is Spread the Word to End the Word Day. In short, I’m tired of people defending their use of the word. I’m tired of people thinking it’s ok. And I’m past the point of wanting to be nice about the whole thing, asking politely for people to stop. Using this word today, in this […]
Welcome
We’ve been doing a lot of treading water in my family these days. Rowenna’s therapy has been incredibly transformative (more in future posts) but exceptionally time-consuming. Afton has been on her own diagnostic journey, which has left us with a lot of bills and not much in the way of answers, and has a sleep […]
Windows
Truth be told, one of the hardest things about the last year has been watching Rowenna slowly slip away. Where she used to want hugs, seek comfort, imitate signs and sounds, we watched her retreat into her mind and didn’t know how to help her. A month into therapy and two months into the school […]
Open Letter to NDSC
On October 16, you sent an email to your membership asking “Are We ‘Aware’ Enough Already?” and provided a somewhat flip answer to the question. I’m not sure if your email was in response to some of the excellent blog posts written about the need to move beyond awareness (at least one of which has […]
Wistful, Wondering
October 15 is Pregnancy and Infant Loss Remembrance Day. This day is a bittersweet day for me. I think of the babies that were not born into this world. I think of the pain, both physical and emotional, of their losses. But I also think of the incredible kindness shown to me by family and […]
Down Syndrome Awareness
October is Down Syndrome Awareness Month. So, let’s get that bit out of the way: Down syndrome is a thing, my oldest child has it, so…be aware. This month, social media will be flooded with extra pictures of people with Ds and many will choose to share facts and figures. That is good, but I’m […]
End of Summer
Nothing profound here, just an update on what keeps us busy these days. I love this time of year. The sun gets a bit hazier, the nights a bit cooler, and there is a pleasant buzz in the air as families lock into the school year routine. There is a hopefulness and a certain kind […]
The Plan
First things first: earlier this month, Rowenna received an official autism diagnosis. We knew it was probably going to happen, but having a folder full of information thrust into our hands and then a month of calling therapy providers and chatting with various insurance reps made it a bit more concrete. This has been a […]
Blog Challenge Week 7: Golden Moments
It’s a Sunday morning. Sunshine streams in through the windows, the ceiling fan circles lazily above us. Both my girls are morning people. I assure you they did not inherit this trait from me, but even so I try to soak up these moments even if I’m not quite ready for the day. Rowenna comes […]
