Sunday, July 13, 2008

Boston DS Convention

Sorry I didn't update while I was there but I was so tired by the end of the night and my computer wasn't working there.

AMAZING!! I had such a great time, met so many people and learned a little too. So I will just do this day by day I guess.

Friday: We had nothing planned for the afternoon so we slept late and then went to register at the convention center (across from hotel). After we registered we took a look at the different vendors and got some flyers. We then went for a car ride to find some flip flops for Lucy. We got lost on the one ways in Chinatown and I decided when I saw a sign for the MA Pike I would take that until we could see something that looked like shops from the Pike and then get off. BAD IDEA! We end up in Wellesely and drove forever to find anything and then got lost and FINALLY found Boston again and took forever to get back to the hotel, NO FLIP FLOPS. We arrived at the hotel at 4:45pm and had 5:00pm dinner plans with the people from the online group I chat with. We changed and got there in record time.

Dinner Friday: It was a little crazy having so many kids and adults in a small place but it was a great time. I met briefly with the moms, children and dads who have been such an inspriation and support to me through the past few months. The children were so beautiful and I can't wait until Vinnie is old enough to join in all the mischief.

Friday Night: There was a cocktail/cash bar reception where they honored Dr Crocker and many others. One person that stood out to me was the woman who sent me all the information I needed when I reached out to the MDSC (Massachusetts Down Syndrome Congress). I have e-mailed with her back and forth and she was great to talk to in the first few weeks after Vinnie was officially diagnosed with DS. There was a dance for the young adults and bothers and sisters, we peeked in on that and it was pretty fun!

Saturday Day: We attended a session on speech 10:45am-noon. It was ok, not in depth and mostly things I knew. The we met with some of the people from DownSyn (my online buddies) for lunch. The 3 families knew eachother pretty well but they were very welcoming to us and I appreciated that so much. After lunch there was a little time before the next session at 3:45pm so one mother (and her 11 month old) came back to the room with us (she was staying with family so she was on her own with no place to hang out). She has 2 daughters with Ds. After her first was born the chromosome analysis showed a 21/21 translocation (Vinnie is 14/21 translocation) so her and her hubby were tested and both came back with "typical" chromosomes. So when her next daughter came with a 21/21 translocation it was a little shock. She is a medical mystery and is looking for a genetics specialist to see where this could have come from, obviously not just a fluke! So that was amazing talking to her and hearing her thoughts on future children. He daighter is about the same sizer as Vinnie, I guess he really is BIG for having Ds. We went to another session "New Parents Survival" hosted by Jennifer Graf Groneberg (author of Road Map to Holland) and Kathryn Lynard Soper (editor of Gifts). They did an amazing job but I think it would've been something to look into having the diagnosis new or prenatally. They gave out books so I now have 2 extra copies of Road Map to Holland and 1 extra Gifts.

Saturday Night: This was my most favorite night. We went to the big dinner reception. I sat with my DownSyn friends but I was mostly excited to meet one mother and her daughter (10yrs old) because they have been so much an inspiration not only for me but for so many others. This woman has put herself and her daughter out there to show people that our children are more alike than different. She has YouTube videos that have really saved lives of unborn chidren. The admiration I have for her is huge. She has made me believe that it WILL be ok.

So the weekend was so cool. Along with the above happenings there was that sense of family all around. Everywhere you turned there was one of OUR children. The features like Vinnie's, nobody to stare (not that this happens a lot with Vinnie he's too young). Everyone there knew he had DS and I didn't have that awkwardness when they told me how beautiful he was. The awkwardness of "do I tell them or not". I heard stories from mothers new and old. I met a couple that had just gotten engaged and they just happened to have DS. She was so excited telling everyone and showing off her ring, so typical, so beautiful. A young man with Ds in an elevator ticked off at his mom giving her the "talk to the hand" and brushing his shoulder off when she tapped him, so typical, so beautiful (in my eyes). A young couple with DS walking across the street back to the hotel from the dance, arguing about something. SHe walks ahead and when he tries to talk to her she turns away in protest, so typical, so beautiful. Children of all abilities dancing and laughing together...soon will be so typical and it WILL be so beautiful. I will be looking forward to next years convention for the next 382 days.

No comments: