Happy WORLD DOWN SYNDROME Day! Did you know DS rocks? I mean people that have been blessed with an extra chromosome, are truly some of the best people I have ever met. Sure they may not have the intellect that us full chromosomers have, but their hearts? I am convinced God made them bigger than the rest of normal folk. In this day and age that goes a lot further than intelligence.
My brother is 3 years older than me, his name is Adam. He loves bowling, his job, and his fiancee. He likes to work out, and has a strong affection for bread…seriously, there was a year or so in his childhood that buns was all he would eat! He is obsessive compulsive to the point of locking me out of the house if I ran out to grab something from my car. I couldn’t put a dish in the sink, and walk away for a minute without him washing, drying and putting it away. He gets up 3 hours before work because the man cannot, and will not be rushed. He worries all the time, is overly compassionate, and has a smile that will light up any room. Pretty much everyone that meets him falls in love with him. As they should, because he is just plain awesome!
Being his little sister had its trials growing up. He always wanted to tag along with my friends, would sometimes say inappropriate things, and embarrass me, and I was always carted round to his many appointments. To me he was no different. I just treated him like any little sister treats their older big brother. I got mad at him, fought with him, laughed with him and would do things like blow milk out of my noise, or bang my head off the wall at the dinner table because it would put him in hysterics for days.
I often would go to his different special olympics sports and events, and meet his friends with Down Syndrome, and other syndromes and disorders. All of his friends had a crush on me, and he would get so mad at them. I remember one of his friends he played hockey with; Jon. He was autistic and was brilliant with numbers. He would constantly ask me my age and birthday and he would tell me exactly how many days old I was in a matter of seconds. At hockey he would skate around me in circles, and just ask to shake my hand over and over. His other friend Harem would get so excited when he saw me he would squeeze my hand so tight and jump up and down, and squeal. My big brother wasn’t happy about the attention his friends would give me and he would always try to protect me. Pulling me away or telling them to leave me alone. It was so sweet of him. He was just being a protective big brother keeping those boys away from his little sister.
I was always very close with my brother and I hate how my busy life with kids, and being in different cities causes us to spend very little time together these days. I know it is something I need to be more intentional with because one of few downers about down syndrome is that he has a lower life expectancy, among other health issues.
People always ask me what it was like growing up with someone like him. Sure I had my phase where I was embarrassed of him, and the stares and attention I got when being together, and sometimes I needed space from him, but my love for him has always been so strong. In many ways I am like his big sister, and his protector. I once pushed a kid and said some not so nice things to him for making fun of my brother. I would loudly call out to people “what do I have something stuck to my forehead?” when people would stare.
Even though the rate of abortion is still incredibly high when people find out their unborn child is missing a chromosome, there is much more acceptance this day and age. More ways to connect with other DS moms, and families, more support groups, activities, and programs. My mom had it hard, and I admire her for paving the way and always being his advocate. Our whole family has been hard on her for always putting him before us, but the older I get, the more I can relate to her as a mom. She had to be his protector, and fighter. She had to keep pushing forward when she was faced with so many obstacles. I remember feeling resentment sometimes because I always felt like she made everything about him. I was always dragged to this, that or the other for Adam. I now understand and can look back at all the times she did special things with me like horseback riding, and craft making. She was just trying to do her best.
So what was growing up with a sibling with DS like? Well it was awesome. I am tolerant, accepting, perceptive, and willing to love everyone who is different because of who he is and what he has taught me. I am so thankful God blessed our family with him. I can’t imagine life without him! He may never be able to read or write, but he knows when I’m sad and just how to cheer me up, he is an awesome uncle to my kids, and his smile will forever be infectious.
Here is a documentary that was done about him a few years back 🙂 It makes me tear up every time I watch it. I am so proud of him. Love you bud 🙂
If you are a new mom to a child with Down Syndrome, please know how amazing your life will be. I know you are scared, I know you feel unsure of what the future holds. I know you are going to have tough days, but you are one of the luckiest mamas in the world. Trust in that.
Here are some of my favourite family blogs about kids with down syndrome.