DSRG Helps New Parents Embrace the potential
IWhen our son Michael was born in October of 2007, we did not know he had Down syndrome. The doctors told us right after he was born, and right before they whisked him off to the NICU at Baystate Medical Center – miles away from his mother (at Cooley-Dickinson) who wasn’t taken to Baystate until two days later. That was traumatic enough. The information we received from the doctors over the next few days was upsetting: he may need heart surgery, he may never breastfeed, he may later have trouble speaking, he will be intellectually challenged, and he will require much therapy and aid to get through life. But even so, when we held him in our arms, sang to him, and looked into his beautifully translucent, blue eyes, we knew he was ours and that whatever life threw at us, we would deal with it.
After two weeks we brought him home, and it turned out he didn’t need heart surgery. So we learned that the predictions of doctors don’t always come true. It is true that he never breastfed, but we learned to roll with the punches, just hoping that the next one wouldn’t knock us out. Shortly after Michael came home, a member of the DSRG contacted us and sent us a wonderful box full of books, a toy, and (most importantly) a binder full of pamphlets, fliers, and lots of information about resources for parents like us, and kids like Michael. We took our time getting back to them – but when we did, there was so much acceptance, so much help and information, and with all that came so many reasons to think that Michael was going to be ok – that we were going to get through the maze of “disability” and “difference” with dignity and love.
I remember the first DSRG activity I attended: a lecture presented by Karen Gaffney, the first person with DS to swim in a distance relay across the English channel, and the first to swim solo across Lake Tahoe. Since that 2008 lecture she has given a TED talk, she has won an honorary doctorate from the University of Portland, and she has started a foundation, as stated on her Wikipedia site, “dedicated to championing the journey to full inclusion for people with Down syndrome and other disabilities.” I left that lecture feeling exhilarated and relieved that Michael would someday contribute to society and leave his mark like any other person.
Since that event I have attended DSRG Summer Picnics, Buddy Walks, banquets, informational seminars (on toilet-training, medical concerns for children with DS, living wills and trusts, and foot-deformities in children with DS), and family play-dates. I have sent a few school-support-staff to the MDSC Educators’ conference through the generous support of DSRG scholarships. I even served on the board for a while, and did what I could to help its mission and support its goals. But what I love most about DSRG is the network of parents who support each other on the Facebook pages with information, advice, referrals, and words of encouragement. Just the other day I logged on to ask about boots that would fit my son’s orthotics. I got lots of ideas, and that was great, but just seeing the volume of responses reminded me that I am not alone – that there are a lot of folks out there who care and who can help.
In short, my family is very grateful to DSRG for being there, for providing support, and for offering a place where everyone belongs. Michael is only nine now, but someday he will be twenty-nine, and the peers he has already met and will continue to meet through the DSRG will be his best and closest friends through life. This gives us great joy."
Teresa Rambsy- mother