Dear Santa

December 25, 2011

Dear Santa,
Even though it’s 1:30 AM on Christmas morning, I have to believe the calendar is wrong. The date says December 25th, and I’ll admit it looks like Christmas with the lights and decorations, it even sounds like it. It just doesn’t feel like Christmas to me. No matter what I did this year, I just couldn’t capture that feeling.

Not being able to feel Christmas is quite sad for me, mainly because I (used to) love Christmas so much. I was that guy who couldn’t wait for Halloween to be over, just so he could start listening to Christmas music.  Like so many other things, autism has slowly stolen my ability to get in the Christmas spirit.

I know I need to find a way to worry less about things I can’t control, and in some way, that means I need to find a way to worry less about Bellamy. It is true that she has made big strides this year, but at the same time she’s getting bigger, stronger, and that means she is harder to control. When she does act out, things can get pretty bad. It seems the past few months have been a whirlwind that involves holding my breath each day as soon as I drop her off at school, only getting to exhale when I read her daily progress report. A bit of respite for an hour or two, then it’s back to the breath-holding again with hopes that her evening ABA therapy sessions go well. As a parent, you never get used to the sounds of distressed child, but as a parent of a child with autism, you never can escape those sounds. I know, at least for me, one of the reasons why I keep such a busy schedule is because it is a way of trying to escape the inescapable reality of autism.

As I wait for you to visit our house this year, I wanted to take a moment to put into words what has really been bothering me as of late, because it’s not just Bellamy’s condition. It is the fact that I realize that neglect is the real cost of this nearly all-consuming focus on one child. I also realize that I’m not the one who pays this cost, that bill gets paid by our other children, Chloé, Delaney, Maggie, and Campbell. We try our best and do what we can, but Denae and I both know it’s not fair, nor is it enough. Knowing this just adds more weight to what is already an almost-unbearable burden. I love my daughter Bellamy to death, but absolutely hate how autism has affected not just her life, but the lives of her four older sisters. Hate alone isn’t even a strong enough word, it really requires at least a paragraph or two of vulgar expletives, preferably authored by sailors.

Santa, if you could find a way to grant a grown-up kid like me a few of your magical wishes, I’d be forever grateful. Know that I would wish for those four wonderful girls to have back the parts of their childhood that autism stole away. To erase from their minds any of the traumatic episodes they’ve witnessed involving their baby sister. To have them forget that they ever heard me say any word that may have seemed hurtful, mean, or even sarcastic while I was battling all the things autism brings to bear on our daily lives. To help them understand that their parents are so incredibly proud of them, despite the fact that seeing both of us attend one of their events together is more rare than a white Christmas in Las Vegas.  Finally, I’d want them to understand how truly sorry I am for not being able to consistently be the father they deserve, and how much I wish with all my heart things were different.

So what do you say, St. Nick? I know that’s a lot of extra weight on your sleigh. If it can handle the load, do you think you can you fit that down the chimney along with the toys tonight? If not, maybe you have something in your bag that can help me learn how to slow down a little, to be more a little more patient, and give more time to my other children. Hopefully, at least that will help me try to give my kids the kind of Christmas I remember. The kind where magic happened. The kind where you couldn’t sleep because you were excited, not because of guilt or worry. Because those were fun, and I’d love for my daughters to know what that feels like.

(The kid that used to leave you an ice-cold bottle of Rainier)