Wednesday, February 29, 2012

Happy Rare Disease Day!

It's Rare Disease Day, a time for people to recognize the enormity of the responsibilities we special mothers face on a daily basis... A day when others tell us what good mothers we are for taking care of special children and how much God will bless us for all we're going through. A day we all pull together to support each other on this ride we're on...

But there's something I think needs to be said...

I think we're the lucky ones.

If you'd have asked me when I was pregnant four years ago what I wanted, you'd have gotten the standard "as long as it's healthy" reply. You know what? It irritates me when I hear that now... Because I think we're the lucky ones.

If you'd have asked me four years ago what the worst possible outcome of pregnancy would have been, I'd have told you a child who didn't have ten fingers and ten toes; a baby that wasn't "normal." But, you know what? I think we're the lucky ones.

I am immersed each day in a sea of special needs parents and special needs children. We are all very different people with children who are at varying levels of functioning or medical needs. We all have lives that revolve completely around appointments and IEPs and insurance and the ignorance of others and all the other craptastic things that go along with having a child who is not "normal."

But, you know what? I think we're the lucky ones.

When you look at this ragamuffin group of friends I've accumulated and their spazzed-out, occasionally blue, always stimming, rarely verbal, wheelchair-bound, genetically enhanced, or ER-loving children, you don't see a group of mothers who sweat the small stuff. You see a group of mothers who celebrate... You see mothers who see beauty and love and miracles everyday in a way that most people can't. Those lines around their eyes? They've been formed from both tears and laughter.

When I look at the way our lives have been re-prioritized for us, not by our choice, but by the grace of God, I am thankful. I am thankful for a life so full of goodness and blessings that I rarely notice the inconveniences. I am thankful for a life that society would choose to pity unless they got to walk in my shoes just one day, and then they would see just how much more beautiful the view is from here. 

So maybe I have earned a few more gray hairs than some. Maybe I've spent more time crying than most. Maybe I've gotten less sleep than... everyone.

But the juice is definitely worth the squeeze. I love that kid with all of my everything, and I wouldn't trade him or one thing he's been through for 100 of your "normal" kids. 

Because we are most definitely the lucky ones.

No comments: