IMG_5035One of my earliest memories is when I found out that I was going to be a big sister. I was about 2 1/2, and remember running to my neighbor’s house to share my exciting news – that a few weeks after my birthday, I would have a new baby at my house. When May 19th, 1994, rolled around, I was beyond ecstatic and couldn’t believe how lucky I was to have a brother. Sure, he didn’t do as much crawling or talking like the siblings of my friends, but he would let me hold him, give him his bottle, love him and read him books – which is all I really could have asked for. Sure, he spent more time in various doctors’ offices, started talking and walking a little later than other babies, but he still made me laugh and I still got mad at him, just like with my other siblings. He didn’t talk much, but he taught my family and I sign language. By the time he began to speak at age 3, he knew over 300 signs. He couldn’t walk as fast as I could, but he taught us to slow down and find caterpillars and let them crawl on our noses, and to pick flowers from the park, even if we weren’t supposed to. I don’t remember when I started noticing he was different but I also don’t really remember having any sort of formal sit-down with anyone about the ins and outs of Down syndrome – I just knew he was my brother and I loved him and he might need a little more help along the way than other kids.

Scan 234My parents never made Down syndrome Jason’s only identity – it was always an important part of him, but never the ONLY part. As I got older and saw how Jason was sometimes treated differently, it got a little trickier. I never knew what to say when friends would throw around the word “retard” or call something “retarded” out of frustration, and usually just felt my heart break when they did. When we went places as a family, we sometimes got prolonged stares. There were some painful school and personal experiences, I sometimes wondered what it might be like to have a “normal” brother, but I soon realized that a) there’s no such thing as normal in any family or with any individual, and b) even if I could find anything normal, it would be so incredibly dull. Now, I can’t imagine my life any other way but with Jason as my brother. He has taught me so much, accomplished so much, and I’m infinitely proud and grateful to get to be his older sister. He is smart and loves sports and remembers EVERYTHING and is always up to date on all movies and songs on the radio and never fails to make me laugh, especially when I don’t want to. I could go on forever about all he has taught me. I’ve met so many incredible people, been connected to all sorts of amazing opportunities, and grown into an entirely different person than if he didn’t have Down syndrome.

11425106_10206478931190355_3362589355173732067_nGrowing up with a brother who happened to have Down syndrome was one of those things that changed everything and yet changed nothing. I’ve come to think that Down syndrome, or any sort of intellectual or physical disability, is just another small contributing part of what makes up a person. Chromosomes are weird little parts of us that at the end of the day, cannot be the defining part of a life. We are ALL so much more than our chromosomes, and ALL of us have stories to tell and lives to live. They’re nothing but a number. To any families or people who are new to the Down syndrome community, it can absolutely be scary and overwhelming. And it is without a doubt, one of the things I am most grateful to be a part of. It may not always be what we expect, but what parts of life ever turn out remotely close to what we expect? We take what we get, and we figure it out as we go, alongside our humans, with grace and a whole lot of love.

Helen Boggess
Speaking up for those with special needs
IG: @helenboggess