Jeff holding his nephew Roan

I always make it a point, when talking about my family, to tell people that I have an older sister who is married with four kids and that I have an older brother who has Down syndrome. I want them to know right away, that I may not have had the “traditional” upbringing they may have had with their siblings. I also have a very different relationship today with my brother than they may have with their siblings. Or maybe I just do it so they will ask me questions about him and I can brag about how awesome it was growing up with him and how amazing he is now!

Growing up in a family with a child with special needs isn’t always easy, but for our family, Jeff was a complete blessing. He was very independent, had his routine and his activities to keep him busy. I think as a younger sibling, I got off pretty easy with an older brother who was more interested in listening to his music than torturing his little sister. He had, and still has, a very full life. He lives in a group home with wonderful caregivers, goes to work, participates out in the community and enjoys hanging out with his family and six nieces and nephews.

Having Jeff as an uncle has been fantastic for my kids and their friends, a chance to take away the “mystery” of what living with Down syndrome is like. When they were little, they went through a phase of being a bit wary of him, but then immediately followed with a phase of jumping all over him. For them now, they just see him living his life – talking about sports, coming by for dinner, celebrating holidays and special events with us – and know that he is happy with the life he has created.

One of the best parts of having a brother like Jeff, who leads such a fulfilling life, is to share his story with parents who have small kids with Down syndrome. They love hearing how he graduated from high school, how he was able to move into a group home, have his independence and how he is a very healthy 45 year old, with no signs of slowing down. It gives these parents comfort as they venture into the unknown world of having a child with this condition. They see that there are no limits to what they can provide to these children, that their lives will be full of meaning, fun and that their futures are as open as an child’s can be.

By Joanna Redfern, Volunteer Blogger

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