I think something that every parent understands is how often emotions come into play when you're raising a child. This is true for all parents, special needs or not. This is just another way in which kids with T21 (and their parents) are more alike than different. I decided to write about the emotions involved with parenting special needs children because today was one of those days which brought more of them to light than usual.
Specifically, today was a GREAT day! I took the big kids to a friend's birthday party where they both had a very fun time. Then we left the little boys with family and took the big kids roller skating for the first time. It was actually for an event related to the elementary school's PTO. The entire rink was filled with small, inexperienced skaters tumbling and bumbling about. Oh yeah - and their parents, many of whom (including myself and hubby) who appeared not to have been on rollerskates for close to 20 years!
When I stopped to think about it, I realized I must have been crazy to think that all of us would be skating successfully this day. Katelyn and Trevor have never been rollerskating, but overall it actually went rather well. Katelyn fell probably 20 times in less than two hours. I'm certain she'll be extremely sore tomorrow, but she loved the experience and was actually doing much better by the time we left. I took Trevor around the floor twice (almost supporting all of his weight). We took one bad fall together and by the time we got to the exit area, he plainly stated that he was done. He didn't want to practice anymore. That was about 10 minutes after we got our skates on.
When he plugged his ears with his fingers and asked if he could go home to play the Wii, it struck me... How in the world did I expect this child to participate in this activity when he's got so many neurologically-related balance issues? How did I not think about how the noise level would irritate his overly sensitive hearing? How did I forget that an activity which his sister would find challenging but rewarding would likely leave him frustrated and wanting to give up early? Then I felt like a bad mom for not remembering to think of Trevor's special needs in circumstances such as this.
But then, as he often does, Trevor surprised me and once we traded his skates back in for his shoes, he was able to focus on trying to have fun while we were waiting for Katelyn and hubby to return. There were no tantrums and no whining. (well, not while we were in the rink, anyway). He demonstrated a surprising level of patience and understanding about letting others have fun even if he'd prefer to do something different. We told him how proud we were that he'd at least tried skating and that we'd love to give him the chance to practice more in the future when he's ready to try again.
So to return to my original subject... I had a moment in that roller rink when I was flooded with emotion about failing to plan ahead for Trevor's special needs. Sometimes it's guilt over forgetting something I think I should have remembered. Sometimes it's being overwhelmed with pride for how well Trevor handles a situation just when I expect the worst. Sometimes it's grief and worry about what lies ahead for Levi as he grows. Sometimes it's joy in seeing a simple smile spread like a ray of sunshine across the face of one of my little loves.
When I hold my baby and wonder how tough the years ahead will be, I try to remember that as always there will be laughter and fun and adventures mixed in with the challenges. He will bring light to our days, just as our other children have done. He will be loved and will love us, which is what life is all about. Thinking about the challenges we may expect often brings me to tears. For me, it's very difficult having so much out of my control and knowing that I will not be able to shelter my children from all the bad things in the world.
When I become overwhelmed by these emotions, I try to remember to have hope that someday, our society will come to understand that kids with T21 and autism and so many other disabilities (or different abilities as some like to say) are just like everyone else. They are varied and interesting and multi-faceted. They are not defined by their medical conditions, but by who they are in spirit and character. I want to share who they are with others so that they will see this and not fall into the trap of expecting only the stereotypes of people who share the same diagnosis. I don't know that we'll ever reach a point where society-at-large is accepting of those "imperfect" people. I think that more than ever, we are cultured to desire, expect and work towards having perfect children, which we can hold up as evidence that we ourselves are better than others think we are. As a population, we seem to want a cure for all things imperfect and have a more difficult time seeing equal value in those people we deem less-than-ideal. I want to believe that in the coming years, advocacy will spread and our values as a society will change. If I knew this to be true, I'd think my heart would be less heavy at times. For now, I will remember to have hope and to do my part to put that kind of change into motion.
No pics of Levi today, but here's Trevor enjoying his post-skating snack and enjoying himself despite the "failure" of Operation RollerSkating!