Skip to main content

Another blurb. Nomination for the DSAGSL

This time it’s for local charity awards, why I think the DSA is a worthwhile cause.
________________________________________________________________

The Down syndrome community is most valuable when it provides just that. Community. Knowing others who are traveling a similar journey, learning from experts who really care about the individuals for whom they are sharing and teaching makes all the difference. The Down Syndrome Association of Greater St. Louis is an organization that takes community seriously, and their members benefit from their commitment to that end. I have benefitted from that commitment. My daughter’s future is brighter because the DSAGSL is walking the path along with us.

Some of the best friends I have are those I’ve come to know through our local DSAGSL community group. The most amazing and inspirational moments have been when I’ve been able to share with new parents, through the New Parent Support of the DSAGSL, that a diagnosis that many say is not worth life at all is a precious child first and foremost. New Parent Support is a vital tool and true blessing to parents who find themselves on a path they did not anticipate. The beauty of humans coming together to care for, invest in, and share with one another is so very encouraging. Whether it be playing together with a group of toddlers, learning valuable information at a conference led by research pioneers, or walking with a few thousand close friends to show support, bring awareness, and celebrate our loved ones with Down syndrome, the DSAGSL provides true opportunities for fostering genuine community.

Comments

Popular posts from this blog

31 for 21: What to say

I have encountered plenty of people who ask "How old is she?" when Braska and I are out together here and there. They always guess her age about 5 months younger than she is, but that's ok, since that's what size she is. I have said several times that I can imagine it will bother me a bit more, although still not a huge deal, when she turns one next month and I see their reaction to that, as she still is in her car seat/carrier when we're in a restaurant or in a store since she doesn't sit up. Today, I met some friends for brunch. The waitress was a nice enough, very young girl, and she started cooing at Braska right away. That's nice. I don't mind, Braska likes the attention, and I'm proud of my cutie. The waitress asked her age, and I told her 11 months. She then said, "But she's not walking yet?" as she noticed that she was up to the table in her car seat/carrier. I just agreed and said, "Not yet." She said she h

Little call, big letters

This will make more sense to you DS moms and families out there... I apologize for the cryptic nature, but you'll have to trust my reasoning. Braska had a lab draw on Tuesday last week. The GI called me Wednesday and said there were some significantly elevated levels in the results. Ok fine. Not like we've never had an abnormal lab. But then he used *those* words...the C word and the L word. Said he'd be talking to hem/onc. We needed to go redraw on Friday morning. We didn't freak or anything, but when I hung up the phone, I thought, "Wow, so that's what it's like the first time they mention it." We took her for her draw again on Friday morning, and we figured everything was fine since we got no call over the weekend. Yesterday I checked in with them. Dr. R confirmed that everything was clear, almost in a "weird way," but they checked with the lab to make sure it was a viable result. All is well. Follow up in 6 months as usual unle

Can I get a do-over?

If you are in need of a laugh at another's expense, I invite you to read on... really, it's totally ok. I can take it. This might end up long, but I wanna remember this special day. Oh so special... Today is my first day to have both girls and be on my own. Yeah, it's been two weeks, but I'm apparently slow at learning how to deal with this kind of thing. I knew it would be a challenge, but I thought with starting way early, we could make it. The quick ending is that we did make it...but that's not really the whole story. Kinlee's been sleeping til about 9 am or so after getting up twice in the night. That's ok, I'm dealing with it. But since Braska is supposed to be at school at 10 am on Mondays, I thought I better not sleep in like I prefer, and instead, I should get up and get things moving earlier to be sure we're on time. Not a problem, since Braska decided to be up twice last night in addition to Kinlee's two times. One time overlapped...so