So when I first started reading a forum for parents of kids with Down syndrome, one poster in particular sort of stuck out to me – in a good way. One day I got a note from her asking if I happened to be Baha’i. Being an observant gal, she had noticed that both my […]
Tag Archives | Down syndrome
Happy Because…
This week’s “assignment” is to list a few reasons I’m happy about Down syndrome. Without further ado, I have a few to share with you! I’m happy about Down syndrome because of all the low tone snuggles I’ve gotten over the last 16 months. Low tone can be a struggle when you’re working on gross […]
Something I Love
October is Down syndrome awareness month. The timing is a bit unfortunate – it almost seems unfair for anything to share an awareness month with the juggernaut of breast cancer awareness. (Not that we shouldn’t be aware of breast cancer – I just think we should let it be its own month!) Anyways, many Down […]
Pause
Today is Rowenna’s Heart Day. A year ago today, Rowenna was carried away in the arms of an anesthesiologist while hubby and I stood in stunned silence. I had the fleeting thought that I have the sweetest baby since she had gone so willingly and spared her mother the heartache of watching her cry. I […]
Normal
We had a very interesting experience at a recent wedding. There were a lot of people there with cognitive disabilities – more than what you would typically come across in a large group of people. The experience completely blew me away and gave me a peek into how the world could should be. First, a […]
The Farm
A quick Rowenna update: Rowenna had a 24 hour inpatient stay last week. Her symptoms are puzzling her pediatrician, so she recommended an inpatient stay so they could run a battery of tests. It was one of the most frustrating days of my life and the amount of fail that occurred in those brief 24 […]
A Love Story
A brief warning…I’m about to talk about pumping. So if that’s a little TMI, scroll to the end for a picture of Rowenna. I’m sharing this story here because, frankly, I think there should be a lot more dialogue about this in our society and it would help moms like myself to have support while […]
Interlude
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 […]
