Sunday, October 7, 2007


Sometimes being the mom of a special needs kid can really bring a person down. Not because we don't love our kids with all of our hearts. And not because we aren't so very proud of who they are. We don't judge them by their accomplishments, by the can do's and can't do's. We just love them because they are ours and they captured our hearts from the very moment we first laid eyes on them, and most likely even before then.

However there are times when it is especially hard to be the mom of a special needs kid. Times when we have typically developing children shoved in our faces, forced into our lives, and we practically choke on their normalcy and their ability to do things our children can't.

Holidays are quite possibly the hardest times for me. And playgrounds. And birthday parties. The list goes on and on. But holidays, a time when any parent looks forward to seeing the joy on their child's face as they unwrap, dress up, sing carol's, collect candy, pull the wishbone, etc. etc. etc. What I wouldn't give to just once have my sweet Thomas pick out a valentine card to give to the little girl he thinks he is in love with. Or for him to see a commercial on TV and say "mommy, I want Santa to bring me that toy!" and then wait in anticipation, hardly able to sleep because Santa is coming and tomorrow he will find out if he did get that toy. I'd love to have him pick out a costume to wear for Halloween, hold his treat bag, shout "trick or treat" at the top of his lungs, then run off before remembering to say "thank you."

It is now October. A great time to be a kid. You get to dress up, you get to play tricks on people, you get free candy, and if you're lucky you get to eat as much of that candy as you can. Yet here we are, Thomas and I, just after our first Halloween outing of 2007. I picked out his costume. I painstakingly created a costume for his stroller too. "This year," I thought,"Will be the year we have a normal Halloween." Nobody will think Thomas is different, because the stroller will not look like a handicapped person's stroller. It'll be an accessory, not a necessity. And so I got out my needle and thread and painstakingly stitched up a cover for his stroller. We had our first outing scheduled. Everything is perfect right?

Wrong. No matter how much I strive for normalcy, I have to accept that I will never achieve it. What is normal for others may never be normal for us. When will I accept our normal? When will I lower my expectations so as to avoid disappointment? Should I? I don' think I should. Should I let go of hope, let go of the idea that at some point Thomas will enjoy these moments as much as any other child, as much as I want him too? NO! I won't accept it. We may not have those same moments as other kids and their families have. But we do have OUR special moments, OUR special memories, OUR own normal and OUR own traditions. And while I may want to celebrate things a certain way, and just when I start to feel the disappointment sink in because Thomas is not reacting or interacting the way I want him to, I am awakened to reality. The reality that Thomas may not do things the way others do, but that doesn't make it any less meaningful.

This weekend we went on our scheduled outing. Grandma and Grandpa came along. We hit the "village" and we trick-or-treated our butt's off. Mom and Grandma looking forward to all the candy they were about to acquire. Daddy and Grandpa trailing behind too embarrassed by our costumes to walk too close. And Thomas, sweet Thomas, sitting in his stroller, oblivious to the concept of trick-or-treating, yet having the best time of us all. The giggles and smiles he sends echoing through the streets make others around us stop and smile. Apparently he likes the bumpy gravel of the road, and the vibrations of the wooden sidewalks. Who cares about candy, this is a fun ride! But the best part was the carousel. Thomas loves the carousel! Around and around, faster and faster, up, down, up, down. Smiles, giggles, then full out belly laughs ringing through the building. Let's go again, and again, and again. At that moment, it is hard to look at him and remember he has CP. It is hard to remember he is not "normal." It is hard to remember that he didn't hold his bag out for the candy-givers, or shout "trick or treat", or forget to say "thank you." At this moment he is Thomas, a little boy having the time of his life on the carousel. He is Thomas, my son, reminding me to stop and enjoy the little things in life instead of worrying about the big picture. And I think to myself, "Don't worry about the can do's and can't do's. Let's just enjoy the now, this moment, this smile, this laugh, this boy on this wooden horse."

And I did.

1 comment:

heather said...

nicky this made me cry.. i think about this too every day .. and i also think of the accomplishments thomas has done.. he amazes me everyday... your a great mom ... the perfect mom ... you are the best!!!! love you