Tuesday, October 02, 2007

Unexpected Joys of Down syndrome

Today's idea for "31 in 21" comes from Jennifer at Pinwheels. Jennifer posts about the Unexpected joys of Down syndrome.

Its hard for me to narrow down the joys that having a child with Down syndrome has brought to me. To be honest, my entire world is more joyful because of Paige. And I think that extra 21st has made it more poignant, deeper, and sometimes more intense.

I have met incredible people as I have walked this path with my amazing little girl. I have learned life lessons that no one could have taught me in any other way. I have seen her sister blossom into a stunning young woman, full of great compassion.

All of these things have been unexpected - and joyful.

But, if I could pass one unexpected joy onto a new family just beginning this journey, I think I would pass on this...

When you receive a diagnosis of Trisomy 21, whether prenatally or shortly after birth, you learn that your child will take longer to achieve certain milestones. Many people say it is a mourning process that takes place as you realize your child may be late to walk or talk, or read or write, or gain independence.

You are immediately launched into a world of predictions when the reality is, there are no predictors for this new baby, any more than there are for any other babies.

So, you begin. You read and research and talk to other people. You learn the new language. You sign up for therapies and intervention.

And you start to realize that it will be o.k. Its o.k. to take it a bit slower and to meander through the milestones instead of racing through them.

That has been one of the best unexpected joys for me. Dakotah raced through milestones so fast that I missed many of them. She potty trained herself at 18 months. We have a video of her first birthday where she was speaking a full sentence "Oh, wow - I like it!"

And she hasn't slowed down since. She was reading before she went to school. And before I could blink, she is 6" taller than me, has a much better figure than I do, and is getting straight A's in subjects that I have not even thought about in nearly 30 years.

It has been so joyous to see Paige move through those milestones a bit slower. She smiled very early, earlier than Dakotah did. But, she took her time learning to walk. She lives in the moment every day. She is never in a hurry, and never hesitates to stop and look when something catches her eye.

I can clearly and vividly remember great milestones of hers - the first time she fed herself, those first steps, even with the aide of a walker, the first time she played itsy bitsy spider, the very moment she realized that her hands could tell me what she wanted, the first time she toddled down the hall to my bed, and crawled in beside me all by herself...

So many firsts, so bright and clear in my mind...and so many more to come.

Unexpectedly Joyful - this stroll we are taking through life.


Jessica said...

Great post! It is amazing the joy that Joey has brought to our lives!

Anonymous said...

Oh Betsy, that is just beautiful!

And speaking a sentence at 12 months old...well, with both my kids in speech therapy, that just freaks me right out! LOL!

Thanks for writing this for you and for all of us too.

And yes, we are in tune today, aren't we? Well you know what they say about great minds - LOL!

Tricia said...

It's so true. I am enjoying every meandering minute!

Nicole said...

So many joys, you're right. I too have appreciated being taught to slow down by my girl. HUGS sister!

Tara Marie said...

Just wonderful Betsy....but exactly what I expected from you. A way to look at JOY and Life.

I love you dear friend.

Rob at Kintropy said...

I hadn't thought of a "stroll" verses a "run" through milestones: thanks for the perspective. Sounds like you are enjoying the journey.

Catherine said...

I think it is important that we are careful not to point out how quickly our other children, born without Down syndrome, reached particular milestones. After all, part of the gift of Down Syndrome is that we have been given the opportunity to "buy out" of comparisons.

Emily Ann said...

Beautifully written...I see that you posted this just 4 days before my little Emily was born and we found out that she had Down Syndrome. I wish I had read this then...:-)

She is an amazing joy and I wouldn't change her for the world! It's nothing what I expected with what the doctors left in my mind while leaving the hospital. I loved her unconditionally from day one but I was soooo scared of what the future had to offer her.

I'm not scared anymore and I now know she has so much to offer the world that us typical people could never do. I can't bring a smile to everyone's face that see's me but she can.

God knew exactly what he was doing when he gave her to me and I thank him everyday for her just the way she is...:-)