9 out of 10

Nine out of ten days, I barely think about the fact that Luke has Down syndrome.  The daily therapies and almost weekly doctor appointments are just part of our normal routine by now.  He's just our sweet Lukey who loves to play the drums (and can turn any inanimate object into a drum set), wrestle Daddy and his big brother, play any game that involves a ball, throw food off his high chair, and check himself out in the reflection of any mirror or glass surface.  He recently discovered the art of shadow play...

A common misconception and stereotype about children with Down syndrome is that they are always happy and easy-going.  To me, this insinuates that these children don't have the mental capacity to experience the wide range of feelings and emotions that all children possess.  Trust me, Luke is capable of getting really ticked off, especially when someone (usually Olivia) takes something away from him.  He's developed quite the feisty side lately, which secretly makes me happy...that is, except when it's time for walking during PT and he crawls like a bandit away from us, kicking and protesting as we scoop him up to get back to work.  Overall, however, Luke really is as sweet as they come!

A couple of weeks ago, I had a rare case of sadness related to Down syndrome and actually cried myself to sleep for the first time since I can remember.  It crept up on me after a couple of health scares (all is fine, thank goodness) and a few incidents of watching Luke get extremely frustrated that he couldn't run around and play the same way Jackson and Olivia were with some friends they had over.  It didn't help that in each case, Luke was supposed to be "working" in therapy, all the while pointing towards wherever the other kids were playing at the time.  My heart physically hurt for him as he seemed so painfully aware that they were off doing things without him.  Don't get me wrong, our therapists are beyond amazing, and they always try to incorporate the other kids into Luke's therapy so he won't feel left out.  Likewise, Jackson and Olivia are so excited when Luke does something new in therapy and are always ready to cheer him on and encourage him.  However, they are kids and there's only so long we can keep their attention before they are ready to run off and do something else.

As my very dear friend put it to me tonight, it's so difficult to see Luke have to work so hard at things that come so easy and naturally for others.  The fact that Luke is not walking or really talking yet is heartbreaking because he's so much more aware now of what others around him are doing.  When we are gathered with friends or family, Luke watches all the kids run around with almost a look of sadness and jealousy that he can't be right in there with them.  While I know that one day soon he will be running around with all the other kids, I see his frustration in not being there yet and that makes me sad for him.

After one night of tears, I felt much better the next day.  I'm realistic and I know there will be tough days along our journey as Luke faces more challenges throughout his life.  However, I won't let my own fears and worries (mainly about his health) get in his way.  I'll move past those tough days and focus on the 9 out of 10 that aren't so bad!