Raw

I've started and stopped this post about half a dozen times. And everytime when I would type the words I found that the feelings behind them were just a little too raw. There was no uplifting message, there was no humor to be found. Nothing but a mother's heart breaking just a little for her child. So I put this post on the shelf for a little while. I figured I'd give my feelings time to heal just a little. Then I read a post today by Jess Wilson. Her post today was filled with so many of the same feelings I've been experiencing that I revisited this post. Because what she wrote helped me. My hope is that my post will do the same for someone else. Jess...This one's for you, Girlfriend.

I knew Friday that this was going to be a long weekend. After work on Friday we had the annual Fall Festival at Ryan's school. An event filled with among other things, a donut eating contest, face painting and pumpkin tossing. The next day we, of course had Trick or Treating and the day after that was a birthday party. The weekend was packed with "kid filled" activities and I was already tired just thinking about it. But Ryan was so exited about the planned festivities that I tried to get into the spirit.

First up, Fall Festival. Picture the scene: about 100 parents and kids and a flurry of noise and activity. I wasn't sure how Justin would do with the crowd. About 5 minutes after our arrival I had my answer. With all the activity going on around him, Justin was, for the most part, checked out. No meltdowns, no tantrums, no reaction, at all. Any attempts to try and include him in any of the fun were ignored. Any attempts to get him to say hi to anyone else were also ignored. For the most part, his attention was divided between following the lines that were painted on the gymnasium floor and looking out the window. I kept thinking to myself that his reaction to this scene would have been identical had he been the only one in the room. Around me I watched the swirl of activity. I watched the kids laughing and playing and once again I watched as my child sat oblivious to it all, on the periphery. As I scanned the room I couldn't help but notice two mothers watching Justin and whispering to each other. I wanted to believe they weren't talking about Justin, but the unmistakable looks of pity that flooded their faces as they watched him told me otherwise. It all was just a little too much to bear. The thought that these ladies (that I didn't know) would look at my precious child as someone to be pitied brought me to a depth of sadness I've not yet known. Luckily, the time passed quickly, and although Ryan could've easily spent another hour there we cut our evening short.

The next night was Halloween. We actually had high hopes for the evening. Justin had mastered saying trick or treat and loved his cowboy costume. Then, 5 minutes before it was time to leave for the big event, Justin changes his mind. He peeled off his costume and refused to put it back on. The same costume that he has been wearing for weeks the minute he comes home from school, the same costume he insists on wearing to bed...including the hat. He simply declined and refused to go trick or treating.

So while all the other neighborhood children arrived for their treats, Justin escaped into the other room scripting "Bye-bye Jack" over and over (For the record I have no idea who Jack is). Every time the bell rang I was confronted by happy "typical" children infused with the sugary joy of the holiday. Every time the bell rang I was confronted with the notion that my baby has just "missed" yet another holiday.Because indeed it's not just Halloween. He's never experienced the joy of making out a Christmas list, or the anticipation of the Easter Bunnies arrival. He has absolutely no concept of what his birthday is. To him it's just another day.

Needless to say, by the time Sunday's birthday party rolled around I was spent. Again, as I looked at the other children I couldn't help but compare how far behind Justin is. I don't want to. I want so much to only rejoice in his accomplishments and not focus on his areas of weakness. But sometimes it can't be helped. The pendulum seems to endlessly swing back and forth between feeling proud of how far he's come and fear of how far he has to go.

This weekend I realized something about myself that I haven't wanted to admit. I really have a hard time being around other kids. I wish that wasn't the case. I wish that when I hear other parents brag about how their "little Johnny" is reading at age 4 that I could say, "That's great!" and mean it. But the truth is, I don't. The truth is I am so filled with envy I can taste it in my month.

As I said, this post has no happy ending or silver lining. But it is honest. The truth is, this is never an easy road and even for those of us with children who are "mildly affected" it doesn't lessen the impact that their disability can have on the heart of a parent who wants nothing less than everything for their child.