Wednesday, November 23, 2011

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.
 

31 comments:

padgett said...

What a powerful message to share on Thanksgiving. I hope you and your family have a wonderful holiday together. I am thankful for you, your blog and finding you through Amerstam International at a time when I needed it so desparately. :)

Sherry C said...

Beautiful! I'm profoundly thankful my daughter learned to use her Kaye walker this year at 6 just in time for grade one!!! I loved your post.

Anne Barna said...

I have been looking for some meaningful thanksgiving thoughts. Thanks.

Anonymous said...

I read your message after it's re-posting on Trisha Danze's FB page. I don't even know you but it brought tears to my eyes, thank you for helping me to appreciate what I have and overlook on a regular basis. May 2012 be a year of things to be thankful for you and your family.

jj0212mom said...

I am looking forward to when my grandson can stand alone! His little body is like a noodle at times, but he walks as long as he is holding onto something, like a wall! I am so thankful that I have such a beautiful little grandson!

Rob Rummel-Hudson said...

Perfectly said.

Julia Roberts said...

Hear, hear!

Helen said...

That story at the end about watching the 4 year old take his first independent steps brought tears to my eyes! Happy thanksgiving to your uncommon family :)

Momttorney said...

Love, love, love the late-walker stories. I need them.

And, I love this. Love it. Thanks for reminding me to sit down this Thanksgiving, and start thinking of the "life-changing moments" we've had this year with our sweet girl.

Mary McCormack said...

What a great Thanksgiving message! I hope your family enjoys the holiday & Maya is feeling better!

Danielle Quinn said...

A beautiful post! Thank YOU for helping us all realize how many things big and small we have to be thankful in the world. As a therapist, I can attest that these milestones are so powerful for us as well! I am so thankful for all of the kids I see everyday - each one is such an inspiration! Their smiles and persistence are an amazing thing to be part of :)

The Wagner Three said...

Love this! I'm totally sharing this via my blog!

urbanrhetoric said...

love to you + yours. this was amazingly written.

~p

Jessica Buonocore said...

You are an amazing writer and I am thankful that every time I read your blog, I am inspired to be the best parent that I can be. Happy Turkey Day to you and your family!! XO

Kelley said...

thank you.
you said it.
that's exactly it.

Alisha said...

Ok, I SOo looved this!! And agree 1,000% The littlest things (to others) are like moving mountains to us special needs moms!

Thanks for writing this!

Anonymous said...

I hope you all have a wonderful day.I have a new thought for you.Sometimes you have a typical baby that turns into a typical child and you are thankful and they go to highschool.and the prom and you shed tears of joy.They move out and you are happier then ever,they get married and the joy you share is awesome.Then one day you realize they arent acting right or talking righta few years and tears and sleepless nights later you know they will never be the same.They wont be able to have a normal conversation.Sometime while you werent watching they threw all your happy moments away on drugs and for the rest of your life you will pay for thier mistakes you wont have any grandchildern.but you are thankful somehow they are alive.So your message is very special and you can have a lot of hope and joy and as the aunt of a special needs child That I love very much I know some of those moments and how happy you will be.I have a special needs child that there is no cure for.So for all you adults out there even little drugs change your brain.Think and be thankful.

Jessica Buonocore said...

What a beautiful post. I have to admit that hearing Alex say "hi daddy" all of a sudden sounds so much more amazing than it did 20 min ago! I am thankful for that! Happy Thanksgiving to you and your family!

John Buonocore said...

That last post was from me but I guess Jess was still logged in!

Anonymous said...

I have 3 girls, one special needs, one "typical" (although she has OCD) and one yet to be determined (there are some signs that she may be diagnosed with the same disorder as the special needs child). I have to say I am *profoundly* thankful for my "typical" child(ren) because I know what it means for her to not struggle so much. I understand what you are saying in your blog and I don't wish to take away from anyone how grateful they are for each and every little step of progress in a special needs child but some of us parents out there understand just how amazing it is to have a little person who does things just the same as most of the rest of their peers... to have a child where everything is working right... that's a miracle when you really stop and think about all the things that needed to happen to make a "typical" child. The bottom line is all children are precious and amazing and a gift... it is just a matter of really opening your eyes and seeing it that way.

Kasia and Amelia said...

Nice to meet you and beautiful Maya! I love how you write about being grateful for little and big things that our special kids achieve. I have 2,5 months old daughter Amelia who has achondroplasia and she is just starting to walk independently, 3 steps here, 2 there.... very slowly but our joy is enormous! I can relate very well to what you write. It gives me strength, inspiration, joy... Thank you!!! Kasia

Anne Hawkes said...

Thank you for sharing. I am a member of SWAN UK my Granddaughter is a SWAN and I help care for her. Yesterday I was feeling very sad as an appointment at the hospital had turned into disappointment, but your blog put me back on the right track and I have shared it with my UK friends.

Fran, SLP said...

WOW! I loved reading this and like a few other, can't stop crying, especially with the 4 yr. old walking in front of everone. I bet it was emotional for everyone present!!
I'm a Speech-Language Pathologist and a parent of 2 grown "healthy" children. This affected me on so many levels. It's the small accomplishments that mean the most that we should Not take for granted and be thankful for!!
Hope 2012 brings you many thankful accomplishments!!
Fran, SLP

Jillian's Dad said...

excellently said. I still remember the day my daughter took her first steps and then started walking on her own...at age 5...... the biggest lesson learned of being a parent of a child with SN is 'redefining' success for each of our families.

Coley said...

What an awesome post! Over the years as the parent of a special needs child, I have really enjoyed noticing all the little things that others take for granted.

I hope you and your family had a great Thanksgiving with lots ot be thankful for! My little man ate mac and cheese at the Thanksgiving dinner table for the first time ever. Mind you he's 15 and has oral sensory issues so that was HUGE!

laurelsmom said...

Somehow the words from my heart are always on your blog. Thank you.

LittleMamma said...

I am welling up. The little boy walking real touched me. You are so right that we are profoundly thankful for the little things. I have a typical child too and I do have to remind myself to appreciate the little steps along the way too! With my special child, bless him, I am just so thankful he is still alive. X x thanks for a wonderful post.

Anonymous said...

Love this post. Tears in my eyes as I read this in my baby's hospital room. Thank you.

Anonymous said...

Your post reminds me of what we said about our daughter as we struggled with infertility for years and were given very little chance of having success with ivf but it somehow it succeeded. We always felt that although all parents love their kids, we are.more grateful for ours especially every day of my pregnancy. She does have a syndrome but she is doing so well and just needs speech help, however I can relate to the series of appointments with geneticists and others. I honestly felt like they were often getting more research out of her than we were getting help from them but made peace with that if it can help others some day.

brocks*mom said...

Thanks for reminding me of this post today:) Love it!

Kristi said...

I just read this today and first it gave me goosebumps and then it made me cry. You are SO right that WE are more thankful than parents of typical kids.

And you said it beautifully.

My son has undiagnosed developmental delays, most significantly speech and language. While my good friend worries about whether her daughter will choose poorly in relationships, I worry about whether my son will ever even have one.

I'm glad I found your blog. I'll definitely be back.