We’ve been worried about Rowenna. No news on that front and I have messages with doctors out there waiting to be returned. This weekend, we had the honor of attending the wedding of two dear friends. The weekend felt like a much-needed interlude from what’s been going on around here. Our friends make an absolutely […]
EEG
I haven’t written anything in a while. I could say that we’ve been busy, but while that’s actually true, it’s not the heart of the matter. Truth is, I’m worried about my girl, and I’m afraid to put it in words. I don’t want these worries to come true. Not too long ago I posted […]
Treatment
There is a phenomenon in the Down syndrome community that I just don’t understand. I want to understand it because I feel like something is eluding me. Recently, there was an article in the NY Times about a neuroscientist researching pharmaceuticals that might enhance the cognitive function in people with Down syndrome. His situation is […]
How it All Began
Five years ago today, I married hubby. If you would have told me the day I met him that I’d end up marrying him, I would have told you that you were nuts. He was so shy, so unfailingly polite, and you could barely hear him above the roar his friends created wherever they went. […]
Reminders
Every once in a while something happens that makes me pause and actually say out loud: “Rowenna has Down syndrome.” It’s not that I don’t realize she has it. It’s that day to day, it’s so inconsequential I rarely have to actively think about it. Yesterday I had one of those moments. For the last […]
Think There’s No Problem?
One of the more…interesting things I’ve come to realize over the last 13 months is there are some people in the world with some…unique views. I have heard and read people defending the use of the word “retard” and all its various forms. The special needs community is being “too sensitive” when we ask people […]
Why Not
My uncle paid me the best compliment the other day. I’m pretty sure he doesn’t even realize he did it, but I’m going to take it anyways! He said that he had been questioning whether or not to invite us to watch the fireworks with his family, and he finally came to the conclusion to […]
Camping!
We just got back from a delightful camping trip to Door County (the “thumb” of Wisconsin). Last time we went camping, we had a 3 month old in full heart failure, taking medications several times a day, and being fed through an ng-tube. I figured since we had survived that, we could pretty much do […]
Vital Stats: One Year
Well, here we are. A year later. The party over, the cake eaten, the giant pile of tissue paper and ribbon finally in the trash. We’ve had our one year well baby visit, our one year developmental evaluation, and some fun firsts in the last week. Since my blog is used by friends and family […]
Is It News?
One thing that keeps popping into my mind is whether or not people with Down syndrome doing every day things is worthy of a news story. I’ve been thinking about it for a year and I still don’t have an answer. Part of me thinks “sure, why not?” It’s a chance for people in the […]
