Tuesday, November 20, 2012

We Are More Thankful Than You Are

This was originally posted on 11/23/2011. I love this piece, and I still feel exactly the same way. This is the first time I've ever copied & re-run a post, but I couldn't think of any better way to say Happy Thanksgiving from our family to yours.

We Are More Thankful Than You Are

(By "we" I mean parents of kids with special needs. By "you" I mean parents of normal/ average/ typical kids.)

Ok, so thankfulness probably isn't supposed to be a competition. And before parents of typical kids stop reading---or start sending hate mail---let me quickly say that for a few months I was a parent of a typical kid, and I sure was grateful. I celebrated her first smile (right on track at 6 weeks), gleefully welcomed her first laughs (which we even have on video) and appreciated the heck out of my lovely, growing, happy, healthy baby girl. Had some parent of a kid with special needs tried to tell me "We're more thankful than you are" I would have bristled like a porcupine, shot some eye daggers, and thought passive aggressive things.

But really, it's kind of true.

A parent of a typical child has the luxury of "taking things for granted"-a phrase so overused that it's worth taking a minute to really break that down. In taking something for granted, one accepts something as a given or true, often without showing appreciation. While all parents wonder and worry about the future of their child, the worries of a typical parent have an undercurrent of things-taken-for-granted.
  • Will she get good grades? Of course she'll recognize letters and numbers, and learn to read, and do math, and understand abstract ideas like weather and history. And obviously, she will be able to hold a pencil and learn to write and sit in a desk and listen to the teacher (sometimes, anyway).
  • Will he play sports? Of course he'll stand independently, and walk, and run, and jump, and climb stairs, and not need a walker or a wheelchair or a cane.
  • Will he be teased? You know, not "when will he be teased" or "will he understand when he's being teased" or "will he ever have friends who will just accept him as he is" or "will he have the strength and resiliency to rise above the kids who tease him, because, oh yes, there will be kids who tease him."
  • Will she get married? Of course she'll have relationships and date and all that jazz.
  • Will he go to a good college? Will he stay on the path to college? Of course he'll go through K-12 like everyone else, graduate high school and be college-ready, if that's the path he chooses.
  • Will she make good friends or fall in with the wrong crowd? Of course she'll have meaningful friendships and relate to other people and get phone calls from her friends and have sleepovers and hang out with people besides her mom and dad.

Parents of kids with special needs lose some of those things-taken-for-granted (some families may lose all of them, others may only lose select ones---like if their kid can walk and run just fine but may not interact with other kids). Realizing that nothing is a given for your kid . . . not even the simple ability to someday say, "Hey Mom, what's for dinner?", well, it makes your heart implode.

But then . . . over time . . . progress happens.

When a new skill emerges you are thankful----and then you see that what you thought was truly "thankfulness" before was just a shadow of the real thing. Like the way you think you've had good apples, but then you have one fresh from the tree and are like "Holy crap! That's an apple!" or how you thought dial-up internet was perfectly great and then you got a modem and were like "Whoa---this is a whole different world!"

This is a whole different world.

Maya has been walking for nine months now, and to this day there has not been a single time that I've watched her walk/run down a hallway without think "I can't believe she's really doing it." A week ago she started eating waffles by herself (she holds the fork in one hand and feeds herself with the other hand, but whatever) and it was the first time in 3.5 years that she's eaten a full meal by herself. I didn't have to sit and feed her. It was amazing.

Walking down the hallway? Eating a waffle? These would, without a doubt, be things that my former self would have taken for granted from my typical child. But I notice them, I celebrate them, I am thankful.

I am so thankful.

There are other things---stepping-stone-skills, I think---that are totally life altering for us. When I first realized that Maya was learning to recognize letters, my entire world shifted. If I were a typical parent, I might have thought: Awesome---what a smart girl! She's already learning letters. Maybe she'll be an early reader, we could read stories together, etc

But as a special needs mom, seeing her recognize those first letters sent up a giant, shining, exploding firework-of-a-thought: She will be able to read someday. And then, not far behind: If she can read, someday she will type . . . so even if she never talks, she will type and people will understand her.

What a typical parent would mark as a stepping stone on the given-road-of-progress, I saw as a game changer.

That difference brings with it a more profound level of thankfulness. It just does.

2 years ago today, Maya had her brain MRI. 2 years ago tonight, we found out that her brain was normal. 2 years ago tomorrow, at the thanksgiving table, we were thankful for her normal brain . . . that's a profound level of thankfulness.

Yesterday we went to a "Thanksgiving Feast" at Maya's preschool. The parents all came and brought food and sat with the kids and celebrated . . . and I noticed one of the moms excitedly chatting with the teachers and aides and watching something on the teacher's cell phone. It was a video, taken by the teacher. Earlier in the day, her son had taken his first unassisted steps. Ever. Her little guy has been kicking butt with his walker for a few months now, but yesterday he let it go and took a few steps. And while we were there, he did it again, with both of his parents excitedly looking on. He's almost 4 years old.

And I watched him take steps, and I watched his mom & dad watching him, for the first time, take independent steps and I thought about how lucky I was to get to watch that moment. That moment that takes them from "I hope that someday he'll walk" to "He walked." From hoping that someday he would be walker-free to seeing that there's a good chance. From "Let's keep working towards independent steps" to "Let's work on more steps."

They are more grateful for those first steps than the parent of a typical child. That's just the way it is.

Happy Thanksgiving to everyone---near and far, old and young, typical and not-quite-as-typical. For the parents of kids with special needs, I hope that you can look back over the past year and remember some of your own game-changing moments, big and small. And for the parents of typical kids, I hope that you can look back at some of your stepping stone moments with fresh eyes and realize how much you have to be profoundly thankful for.


Jackie Hess said...

Thank you, Dana. As always, you've captured the perspective perfectly. Have a wonderful holiday!
Jackie and the FCTD cast of characters

Jess said...

Hi! I'm visiting from the blog roll at The Bates Motel.

I was the parent of a "typical" child until a few years ago when I also became the step-parent to a then 9-year old girl with down syndrome. She just turned 11.

It's taken quite a bit of adjustment where expectations are concerned. I have seen her overcome obstacles in her speech, reasoning skills and social skills. But I've also become vastly disappointed that she isn't "typical."

She just recently started to like playing with barbies. Most girls her age are just now growing out of barbies. I was excited about her barbie mania until I realized what girls her age were getting into instead.

I appreciate this post! I'm glad I was able to read it.

Barbara said...

This was one of the first posts I read last year when I found your blog. It brought me to tears then just as it does now. You have been such an inspiration to me over the past year, and for that, I am thankful!

Anonymous said...

I remember this post from last year and I'm so glad you posted it again. I love it - thank you so much.

Sophie Miriam said...

The tendency in our culture to turn everything into a competition is so worrying. If the adults didn't compete so much, maybe it wouldn't be such a big deal if some children were different.

Nisha said...

What you said is so true I have Cerebral Palsy and I know I'm more grateful because of it :)

Anonymous said...

This made me cry. Our oldest is a typical 6yr old, our two middle kids are special needs and our last is typical. It is so crazy to see the mom I was with the first, the amazing things I have to be thankful for with the middles and how all of it combined makes me a crazy/thankful/nut job to the last. It's not a competition and there isn't anything wrong with "typical" families but there is something special about families with special needs and the way we can bond together.

Donna said...

When I first realised that Kitty might not be typical (at about 6 months), I had a chat to a friend of mine who has a 20 yr old child with cerebral palsy. She told me "it's like parenting squared - the lows are way lower, but on the other hand the highs are higher by an order of magnitude". She was right.

Anonymous said...

This is beautiful. My son started walking at 2 and it just makes me happy every day to seeing walking <3 I have learned to never take anything for granted again <3