Friday, June 10, 2011

The New Norm

When your child is diagnosed with some kind of disability the whole world seems like it's coming to an end. Future plans are dashed to pieces and your mind is left considering the frightening "now what" reality of life.

As time progresses, life begins to revolve around doctors appointments, therapists visits, medical equipment, special ed classes and it crowds almost everything else out. You feel a sense of panic as you try to stay afloat amid the needs of your child and the work that comes with them. You seek out support from others going through similar things for the strength to carry on.

That's how things felt for Melanie and I when Whitney was diagnosed with 1p36 Deletion Syndrome almost exactly seven years ago. But this last week I came to a very interesting realization. I've become used to and even comfortable with the life our little family has come to live.

Juggling Whitney's care is still time consuming and sometimes exhausting for Melanie and I. But we've become accustomed to it and it doesn't take the same toll on us any more. In fact, we've settled into a new norm that feels healthy. We've figured out how to stand on our own feet and the tears stopped long ago. In fact, life is pretty good most of the time.

I don't think Melanie and I can really take credit for the progress we've made. We're ordinary folks just like anyone else, but we've put one foot in front of the other and kept moving forward for so long that now it's habit. And, along the way, we've made time for evening soccer games, walks through the neighborhood, movie nights, birthday parties, family vacations and all kinds of "normal" things that fit into our lives just fine.

I mention this not to say, "We've arrived!" But instead, to make sure those of you who are out there reading know that it gets better. You may be in the thick of a very painful and difficult adjustment because of your own child's diagnosis. But if you can just keep moving forward, taking it one day at a time, someday, you'll wake up and realize that you and your special needs child are doing just fine. In fact, before you know it, you'll settle into a new norm and you'll be enjoying life. Don't give up hope. Mark my words. You'll get there!


Britt Hanson said...

I absolutely love this picture of Whit!

Julie said...

oh she looks so cute in this picture!

Heather Thorup said...

Thanks for the words of encouragement, my son was just diagnosed a little over a month ago. We are still reeling from the news, since he his our first and only child so far. Your daughter is really cute.

Nate said...

Thanks, everyone for the kind words. We've been blessed to have Whitney do so well. And not having Whit's disabilities take center stage has been incredibly liberating. Instead we've been focusing on life as a family and having fun together. :-)

Jonathan Rosenfeld said...

Dear Raising a Disabled Child,

I wanted to let you know about a recent article,

The Needs Of Special Needs Children Deserve The Full Resources Of The On-Line Community
I posted on my Bed Sore FAQ ( site referencing your site. Please encourage your readers to take a look at the article.

Thanks much.


Jonathan Rosenfeld
Rosenfeld Injury Lawyers
33 North Dearborn Street
Suite 1930
Chicago, IL 60602

(847) 835-8895
Fax: (847) 572-1331
Toll Free: (888) 424-5757