Tuesday, September 07, 2010

Step it up, Dad

Last night after a fun day playing with the kids and spending time with family I settled down with Melanie to watch a movie. We rented Extraordinary Measures about a family with two severely disabled children who don't have long to live. The father, played by Brendan Fraser, does everything he possibly can to push for the development of new medicines to treat his children's disease and grant them a new lease on life.

The movie wasn't Academy Award material, but having lived the feelings from many of the scenes in the show, it made me want to do more to help my own daughter live to her full potential. There's no simple injection that can cure the many symptoms of 1p36 Deletion Syndrome. So I can't push for that, but I can put forth more effort to make sure awareness in the medical community is raised. I can work to help more children be diagnosed and cared for earlier in their lives.

And at home, I can be a more focused dad working hard to support Whitney as she works on speaking, learning to read and knowing her numbers. I can go out of my way to be there for important therapy visits and make sure she's getting everything she can out of school each day.

Being a dad of a special needs child isn't glamorous. (One day last week I wore a mess of scrambled eggs on my shirt at work because I hugged Whit on the way out the door.) It's an exhausting job, but I can do it better. I feel like I need to give it all I have, because I never know how long I'll have the privilege. Every moment must count.


Speaking of raising awareness, please don't forget 1p36 Deletion Support & Awareness is still in the running for a $50,000 grant from Pepsi Refresh. The organization didn't win in August, but we did well enough that we got carried over to the September competition. You can vote once each day for 1p36 DSA by visiting refresheverything.com/1p36. To make the job easier I've put a vote link on the right side of this very page. And if you text, you can get a second vote each day by sending the message 101439 (that's the ID number for our organization) to Pepsi at 73774 each day of September. You can make a difference by voting for an organization that supports children like mine. Thanks!


Gavin Ross said...

you're a great dad already, Nate, and an inspiration to us to. Hot breakfast every day- I'm impressed if I can get out of my jammies by 11:00 some days! But your right, being a dad to a special needs kid isn't glamorous and it isn't easy. But it is the greatest thing I've ever done, and I can tell you feel the same. Hang in there- our kids need us!

Nate said...

Thanks! You are too kind. We'll see how I do with the school routine now that baby Avery has added an extra level of fun to our mornings. ;-)