Wednesday, October 6, 2010

Catchin' Up

Wow! It’s been a LONG time since I’ve journaled.

I guess no news is good news, right?

Leah is as fabulous as always, although she does have a runny nose and yells at me every time I try to clean her face.

My little “pumpkin head,” (as referred to by daddy) has started Occupational Therapy.

I LOVE Kristen, her therapist.

She is very knowledgeable, warm, and kind.

Leah likes her too, which is really all that matters.

The other day she taught me, “Oral Facilitation Techniques.”

Basically, she showed me how to stimulate her gums to “wake up” the receptors connecting the muscles and nerves in her mouth to her brain. This is supposed to help strengthen her oral motor skills.

Her speech therapist is doing something similar.

This girl is going to have the strongest mouth in Western New York by the time we’re done with her! Which I’m sure means trouble for us…

(If you’ve ever met a Sones’ kid, I’m sure you understand! :))

We are all working very hard to help Leah maintain her current “within normal limits” status of development.

And she is succeeding!

This month is Down Syndrome Awareness Month.

I have a lot of friends who are blogging, “31 for 21,” which means they are blogging every day this month with information about Down syndrome.

I tried to do it too, but since today is October 6th I’m sure you can see how well that went.

I see all of these other mom’s on Facebook happily sharing their little ones’ progress, pictures, and accomplishments. They are joyfully celebrating the gift of Down syndrome and the experiences they are having because of it.

There is true joy in Down syndrome.

It is an amazing diagnosis to witness.

It changes almost every way of thinking which you have ever had.

There is an indescribable peace with Down syndrome, which enters your life.

But on October 1, I did NOT want to celebrate it. I didn’t even want to think about it. I didn’t want to have to know that Down Syndrome Awareness Month even existed.

I was asked once if there was a surgery or medicine that could “cure” Leah, would I do it.




I definitely don’t want to change Leah. She is everything anyone could ask for in a child. But if there was a surgery or medicine which could make her life a little easier would I do it?

I could’ve just treated her ear infections with antibiotics instead of requesting her ENT to surgically place tubes in them.

I could’ve kept treating her Hirschsprung’s disease with irrigation and dilation, but I opted for the surgery which would “fix” it.

I know these are pretty silly examples.

What parent would choose otherwise, really?

But would I change her Down syndrome?

I don’t know.

She is one of the love’s of my life.

I don’t want to change her or that.

She teaches me so much.

Ok, so maybe I would change the side-effects of Down syndrome, but I would not make any decision which would change HER.

But eliminating those side-effects would change HER, wouldn’t it?

So would I do it?

I’m pretty happy I don’t have to make that decision because I kinda like her, just the way she is.

The other day I was getting dressed and I said to Steven, “Do I look like a retar…”



Steven said, “OOOOOH I’m tellin’ Leah.”

Retard was one of those words I used to say as often as I said the word The.

I never meant to associate retard with Down syndrome. To me, it was just a word used to explain something not-so-great.

Now, the word means SO much more and I can’t believe I friggen said it. My heart dropped in that second and I was very ashamed.

I tried to justify it as, “just a word.”

But I know better.

It has shown me that sometimes people speak before they think though. And if I, as a mother who is in awe and admiration of my “retard,” can say it by the slip of a tongue, anyone can.

I need to remember that, the next time I am offended when someone else uses it, and kindly respond, without letting my feelings get hurt.

But I HAVE to respond.

Because of my ignorance of the word before, it became a habitual word in my vocabulary. I don’t know how many people I hurt by saying it. I wish I knew before, what I know now because maybe now my heart wouldn’t be so sad by my own mistake.

It is strange how one simple word can stab you so easily.