Just RK

Can someone describe the physical experience of having a CVS? Not the procedure itself, but how it felt first hand...did it hurt, what was your down time following, etc. There's a mom on a forum who is wanting to know and not many of us there have had one. Thanks!!

Check out this press release about the new clinic for ADULTS with Down syndrome soon to be opened at St. Luke’s Hospital in Chesterfield (St. Louis metro area).  I’ve known about this project for a while since my sister works for St. Luke’s (I call her my favorite big wig…I’m so proud!) but it’s new news that Albert Pujols has signed on in cooperation with this new clinic.  That is exciting! Many of you may know that Albert has a daughter with DS, and he has a foundation here in the St. Louis area, the Pujols Family Foundation , that does alot of things for people with DS and their families. They are very popular among the DS community in these parts! How exciting is it to have an ADULT clinic designated for people with DS?!?  So many of us cherish our DS Centers for our kids, and it’s great to see a need noticed to focus on their health after they’ve “aged out” of the pediatric practice system.  Yay St. Luke’s!  Yay Albert!  Go Cards!

If you don't have Narrow Ridge in your reader, you should. Tom has a great perspective on many things, especially being a dad to Silvi and Ian, his little one with DS. He's working on a documentary about his son, and today he posted a piece that "got" him last night. If you've been through the surgery of your tiny one, you will relate, and it will bring back many a memory, though it's beautifully simple in it's presentation. It brought back a surprising amount of emotion for me, as I remembered sitting and rocking Braska just before we walked her down the hall to hand her over to the nurse at the door to the OR for her open-heart surgery. She was 3 months old. Sometimes, I still can't believe it.

In the previous post, I talked of when I went to college, 18 years ago this past week.  That first weekend, during orientation events, I met Melanie.  We can’t seem to remember exactly when it was or how it was that we met, but she and her roommate, A, became my best buddies right away.  Mel and I had MANY an adventure, some side-splitting hysterical, and some not as much fun, but all of them were priceless in their own way. That first weekend we coined a phrase for which we now just use OTW.  I won’t go into a whole explanation, but suffice it to say it was all about boys.  Anyone surprised?  I was 17…what else was there?  Several years ago,  Mel, A, and I went on a trip together, then another a year later, then another.  We called them OTW trips, and they were so much fun. In between then and now, we’ve lived a few hours apart, but now we’re only 10 minutes from each other, so we’re enjoying getting to hang out more.  I’m loving be...

Tonight I went to visit my sister and see her new dorm room.  She moved to college yesterday. She just decided to do so on Friday. It’s weird enough that this sister, #4 in our 6-kid family, the one who was born when I was almost 16, the one who had just turned 2 when I went to college myself… it’s weird enough that she’s IN college.  It’s weird enough that she’s 20 now.  It’s weird enough that this is her second college, since she went last fall to a different school.  All that’s weird enough in my brain. But tonight, I drove up the street that dead-ends at the college in my minivan with my two daughters in the seats behind me.  I drove onto the campus and pulled into a parking space.  And as I parked in a spot that overlooks the whole place, I just had to stop and digest it for a split second. For it was 18 years ago this weekend, 18 years, that I drove onto that same campus in my 1989 Ford Festiva following my parents in the big orange conversion v...

You may have heard by now that Mrs. Eunice Kennedy Shriver , founder of the Special Olympics, died today at age 88.  There are many great things about her and the work she accomplished on behalf of the those with physical and intellectual disabilities.  But one of my favorite things is that she displayed a complete example of defending the vulnerable, not only those with disabilities, but also the unborn. From the USA Today article , Unlike other members of her Democratic clan, she remained opposed to legalized abortion and was a longtime supporter of the group Feminists for Life . From her family’s statement today, Inspired by her love of God, her devotion to her family, and her relentless belief in the dignity and worth of every human life , she worked without ceasing - searching, pushing, demanding, hoping for change. (emphasis mine) She will most definitely be missed.

(Side note: Our AC is back on. Thank goodness!!!) This was posted on one of the DS forums I visit.  I’ve often thought about this dichotomy in our laws, but I’ve not been able to compile it quite so concisely.