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Gifts : Mothers Reflect on How Children with Down Syndrome Enrich Their Lives

The Gifts Outreach program provides complimentary copies of Gifts to organizations which serve parents facing a new diagnosis of Down syndrome for their child, either prenatally or postnatally. We believe that the stories in the book provide a vital companionship and support for such parents.

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Wednesday, October 14, 2009

Tomorrow is Teacher conference day for our boy, now 8 years old and in third grade. My blog has taken a back stage to daily/weekly/monthly events; my work at the Attorney General’s office as a criminal appeals attorney for you, the citizens of Indiana, my new appointment with the ARC of Indiana board of directors, working with Down Syndrome Indiana and ARC of Indiana to initiate post-secondary educational opportunities in Indiana, being Mom to Nash and trying so, so hard not to be “educator of Nash”, getting our powerful husband/dad BigDawg back on his feet after retinal detachment surgery took him OUT for two weeks…and still continuing.....ugh, he is so vital to our family!

And now that our 2009 DSI Buddy Walk is over, so many positive raising over 110K, but knowing I will be involved in big changes soon, locally and nationally. I am just mind boggled at the split in the national spectrum in the DS movement right now with the major fundraiser (NDSS Buddy Walk) that has allowed ALL of our affiliates to progress to the point they are today. ALL of them. But I digress….

Tomorrow will be a “show me” day, a day for Nash to shine (we tend to leave the negatives for the communication notes, but even those have promise!) and I have no doubt he will do so. We have a fantastic team this year, wonderful accommodations.

Looking forward to tomorrow, unlike the days when I couldn't see beyond the tears.

2 comments:

Beth said...

Hi Jan! It's been a while! I'm glad the Indy Buddy Walk was such a success. We didn't even make it to ours this year due to Chloe's soccer tournament that day. First time we've missed so far!

Glad Jeff is doing better. Also, I have NO idea what you're talking about...a split? What's up? I guess I'm terribly out of the loop.

Mauzy said...

Beth- we have always wanted NDSS and NDSC to merge, and it appears this will never happen, but they are working more closely together. NDSS does policy work with their center, NDSC handles the conference and more research. NDSS requested a mandetory 7% for use of the Buddy Walk trademark/name to assist with its funding for policy, and many affiliates opted out, and are using another name for their Buddy Walk. Also, Affiliates in Action (AIA) has formed a "trade association" and wants all affliliates to become members for a fee, creating more division, with many affiliates using "Step Up for Down Syndrome" instead of the Buddy Walk. There is no cohesiveness which is needed to unite for our cause...creating awareness, uniting for policy and raising funding for research. Maybe it will all work out......I know we are going to be working hard on it at our end in Indiana.