I sometimes can’t believe the progress we’ve made in only a year. I’ve gone from grief and despair to complete exhaustion to absolute joy and pride. Down syndrome has rocked our world in many ways, and Mitch told me the other night, “you know, it’s OK if we have a boring year in 2018…”
October is Down syndrome awareness month, and last year I shared some interesting facts related to Down syndrome. This year, I’d like to share with you some of the lesser known facts that I am now proud represent personally.
At our first appointment with a genetic counselor, she gave us a very generic pamphlet on Down syndrome (as a parent, you never want to receive a pamphlet to describe anything about your child). Anyways, I remember flipping through it while blinking through cloudy tears through my stages of grief. In it there were pictures of precious children and young adults, a happy reminder that this community is more like those of us with (only) 46 chromosomes than we realize. I was skimming through the text, not yet able to read the details of this new information, but one little fact jumped out at me. It said “parents of children with Down syndrome experience lower divorce rates than typical families.” I literally laughed out loud. It was one of those moments that you’re thankful that your sense of humor forgets grief sometimes and takes over. I’ve read a lot about this fact since then, and there is a scientific study that backs it up. I’m proud that Mitch and I have not only survived the newborn phase (truly every parent should give themselves a pat on the back for that), but we also learned a lot about each other and about ourselves in the process. It was tough, but we’re stronger for it. I read another mom’s perspective that maybe faith is strengthened when your marriage goes through a life event that puts you on your knees, begging for God’s mercy. Maybe that’s true, and maybe it’s a combination of these things, but there’s no doubt that Down syndrome has been a big part of our marriage this year.
The other family-related statistic is maybe my favorite; it’s the acceptance rate among siblings of children with Down syndrome. In one study, 822 brothers and sisters whose families have at least one child with Down syndrome were asked their feelings about having a sibling with Down syndrome. More than 96% of brothers/sisters that responded to the survey indicated that they had affection toward their sibling with Down syndrome; and 94% of older siblings expressed feelings of pride. Less than 10% felt embarrassed, and less than 5% expressed a desire to trade their sibling in for another brother or sister without Down syndrome. Among older siblings, 88% felt that they were better people because of their siblings with Down syndrome, and more than 90% plan to remain involved in their sibling’s lives as they become adults. The vast majority of brothers and sisters describe their relationship with their sibling with Down syndrome as positive and enriching. I don’t have a sibling with Down syndrome, but I do feel that I am a better person and better mother because of Regan.
The life expectancy for people with Down syndrome has increased dramatically in recent years. In 1989, the life expectancy was just 25 years old. Today, life expectancy for individuals with Down syndrome is 60 years old! This is thanks to many factors, including the availability of medicine to those with disabilities, the education system embracing those with cognitive disabilities, and our society realizing the blessing this community is to our world.
I hope I have at least shared a small peak into the world of Down syndrome via this blog. I am happy to share our experience and happy to answer any questions in this happy month of Down syndrome awareness!