The leading human rights organization for all individuals with Down syndrome.

National Down Syndrome Society
8 E 41st Street, 8th Floor
New York New York 10017
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Letting Go
Letting Go

Many of you have probably heard the quote that having children “is to decide forever to have your heart go walking around outside your body.” Last night my heart got onto a bus and drove off with all the rest of the 8th graders from his middle school for a 5 day trip to Washington, DC. My son, Danny, is 14, in his final year of middle school and has Down syndrome. I realized as he walked into school with his suitcase that I needed to grow up, fast, because my son is and he’s far ahead of me. I knew when Danny entered middle school that our district offers this trip for 8th graders and had always assumed that, of course, I or my husband would be going along as a parent chaperone. Because our son has Down syndrome. And he has sleep apnea and medications. And he’s never traveled through 4 states without one us. And. And. And. But one of Danny’s Special Education teachers, who is also going along on the trip, said “Oh, no. You don’t have to go. He will be fine with the rest of the kids.” Danny has been checking the calendar on the refrigerator for weeks, counting down the days. He has been telling me what he needs to pack. Bringing me items so I won’t forget to put them in his suitcase. Telling me what songs he wants downloaded on his iPod to listen to during the bus ride. Talking about who else is going, what they will see and what the rules will be for the trip. This trip has NOT been about whether my son with Down syndrome is capable or prepared or mature enough to go but instead has been ALL about whether I am able, prepared or ready to let him go. Certainly, I expect Danny will have a great time on this trip and come home with many tales to tell. And it is a wonderful, inclusive opportunity for him to be with his same aged peers. I have been telling myself, family, friends, and his teachers that after high school I want him to go on to one of the Postsecondary college programs available for persons with disabilities. So this trip is most importantly a trial run for me. A chance for me to glimpse the future. A time for me to grow up and get ready for when my son leaves to live on his own, with or without supports in place. There is no doubt in my mind that he will want to live away from home someday. The doubt lies within me and if I will be strong enough and brave enough to let him. So to all the new parents of babies with Down syndrome I will not say be careful what you wish for. Wish. Wish for the stars and beyond. But start preparing yourselves now for those wishes to come true.

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