Contributing author to Gifts : Chapter 8


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Gifts : Mothers Reflect on How Children with Down Syndrome Enrich Their Lives

The Gifts Outreach program provides complimentary copies of Gifts to organizations which serve parents facing a new diagnosis of Down syndrome for their child, either prenatally or postnatally. We believe that the stories in the book provide a vital companionship and support for such parents.

2008 National Parenting Publications Awards (NAPPA): Gold Award

2008 Mom's Choice Awards: Silver Recipient, Special & Exceptional Needs

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Monday, February 16, 2009

Happy 8th Birthday Son!


To my son on his eighth birthday.

Your Dad picked you up tonight to tote you to bed, and your legs almost dangled to the floor. It seemed you grew 4 inches in the last two days! You are 49 ½ inches tall, weigh about 55 pounds, and are all boy.

Your birthday week/weekend has been so fun! You love to drag your birthday on as long as possible, just like I love to do! You opened the two dozen presents from your Bounce Planet party yesterday where almost all the kids we invited showed up much to my stress level! Three of your friends wrote in their birthday card to you that you were their "best friend". You had wonderful behavior at your party, and well, I am just so darn proud of you.

Tonight I posted in the TRI21online.com board about what is “normal” to have a child with Down syndrome. Below is what I said about you and "normal". I guess because I see you as just our son, and that Down syndrome is just a part of you, that I have no idea of what “normal” is! You know you have Down syndrome, recognize others that also do, and well, you just say "Down syndrome Rocks!" I think you got that from Tarenne!

I love you my Nashtaters, and at eight, I know that you aren’t so little anymore. That brings several tears to my eyes………ok, many tears. Just because, well, you aren’t “needing” momma much these days. And that’s ok, because, well, it’s just probably “normal”.

Happy Birthday Bubba! We love you SOOOOOOOOOOOOO much! (family joke!).

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I will join in. Not sure what “normal” is , especially when Down syndrome is thrown into the equation. I will just chime in, on Nash’s 8th birthday on the 16th, what we have experienced with our son, our only child.

We were thrilled to become pregnant with Nash, as I was 39, and we had been trying for a few years and had several miscarriages before and after Nash. So “normal” for us is a strange concept. I have no idea what “normal” is for any child-is there such a thing? I do know on this 8th birthday, I want a redo of his birth knowing what I do now. I cried for days after learning Nash probably had Down syndrome, and then weeks, months after getting the official diagnosis. Although I had premonitions, which are set forth in my Chapter 8 in GIFTS: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives I thank god every day we didn't have the triple screen and amnio offered to us. By CHOICE. We had Nash. We made the decision we wouldn't terminate and declined all testing other than an ultrasound. I shudder to think if we hadn't decided to forgo prenatal testing, as we would have been so uneducated about Down syndrome and no doubt pressured to terminate, we may not have our beloved son with us today. Tears form thinking about this.....so I move on.

Nothing can really prepare you for the reality of being told you are going to have a child that this society views as not “normal”. Because the reality of having a child with Down syndrome is nothing society teaches us either. We have our child, who happens to have Down syndrome. It’s a part of him/her, but there is so so much more. I think that is what I wanted others to understand from our chapter in GIFTS.

So after Nash was born, and we grieved, we rolled up our sleeves and went to work. Parenting, learning, researching, and later, advocating. And always loving. But what was Nash doing this entire time?

He was following a “typical” timeline, well, as “typical” and “normal” as I thought all kids did! He rolled over at 10 weeks, slept through the night at 8 weeks (yes, I woke him up to make sure he was alive!), ate rice cereal at 4 months, the rest at 6. Waved Bye at 12 months, walked at 17-18 months, ate and drank the “typical” stuff at the appropriate times. But he still hates vegetables, and is a very picky eater. Is that “normal”? Dunno.

He knew 350 plus signs at age 3, read his first sight word at age 15 months, I kid you not. We were doing Love and Learning and he saw the last word in book one “hug” and leaned over and hugged me. I used to do flash cards with him, and he knew his abc’s by sight at age 3. He was potty trained at age 4, through the night at age 7. Now he just disappears and a few minutes of quiet I check on him and yell, “Nash where are you” and sometimes the response is “In the bathroom! I need privacy”! (another thing we just learned…..some things are “private”!)

Now his milestones are fewer and farer between. (or maybe I am not putting those little notches in MY belt anymore?) But we still celebrate them with huge high-fives and big smiles. And we know that it’s not all about milestones, and how much he can accomplish compared to those that are “normal”.

He plays flag football with the guys from his class.

He gets 3 point shots in Upward Bound basketball with the other 7-8 year olds. Not all the time, but he did yesterday!

He is reading at first grade level in second grade. But Math, well, let’s say he’s more right brain like his mom.

He has many friends, but only about 3 that invite him over for overnights or play. Is that “normal”, who knows.

He is a wiz on the computer! He can hunt and peck and find games like there is no tomorrow. But we also have found we need to put parental control on our computer!

And he is loved. He is happy (but I will never be a “they are always happy” spokeperson!)

But I do see frustration kicking in that he can’t do things like he wants; writing is so difficult for him. We are using a keyboard for spelling words right now. He gets very frustrated with anything having to do with fine motor skills, and I am ready to request an evaluation as it looks to me like a motor planning issue. He hates art class.

He has a wicked sense of humor, and can repeat volumes of movie lines, and lyrics to songs. It really is amazing. Wish he could apply it to math facts!

But most importantly, he is happy. He loves his movies, playing outside with his dog, Seger, and the neighborhood kids. He can now play outside without me hovering, goes to the creek with the kids, and well, insert “normal” here…..I know many think going to the creek to play isn’t “normal”!

So that is that. Who knows what is “normal”? Not us!

13 comments:

Kim Ayres said...

Happy Birthday Nash!

8 already? I'm sure you were only 6 last time I looked :)

Jeff said...

Great post Babe....

Happy Birthday Bubba.

All 4 My Gals said...

Nash I have loved you since the day I met you when you were one year old. You have always drawn our family in with your sweet spirit and feisty personality. We love coming to visit you and ALL the girls adore you as if you were their own brother.... well you sort of are their ONLY brother. :) Happy Birthday my sweet boy, you are loved more than you will ever know!!!!! Aunt Nicole

luvmypeanut said...

Happy 8th Birthday! I can't believe our boys are growing up! Where are those babies we use to have???

Enjoy your special day!! Luv ya!

Laura said...

Happy Happy Birthday Nash! Wow, I can't believe you are 8 already! Seems like just yesterday I was looking at the picture of you in the pumpkin! Boy, time sure flies!

You have grown into such an amazing young man and we adore you!

Great post Jan, we love you all!
Have a wonderful day! :)

My name is Sarah said...

Happy 7th Birthday. I am singing to you.

Note from mom: I love your post. It is beautifully written.

Tara Marie said...

Happy, Happy 8th Birthday Sir Nash. I too, can not believe you are eight years old.

Jan, your post brought tears to my eyes......as it was such a beautiful post.

Love you all....and hoping as Nash birthday celebration spills into the week you have a great time celebrating the birth of one great kid!!!!

Anonymous said...

Love and kisses to my VERY special Grandboy !! You are the light of my life ! See you tonight ! Hugs, GaGa

AZ Chapman said...

Happy birthday nash I can't belive you are 8 already. I love the last part of the post Jan. I hope I can meet u someday.

Mommy Mac said...

Great post!...How could he be eight? Are you allowing this? :)

Michelle said...

Happy Birthday Nash!! Hope you had a great birthday.

Lisa said...

Happy Birthday Nash man....and great post mom...really great ;)

Mauzy said...

thanks all for leaving your birthday messages. It is bitter sweet isn't it, going from a little boy to a little man.