Thursday, July 24, 2008

No, no call yet.

I completely expect to have to wait until 3pm MT to call them, so that's a little more than 4 hours from now.

I'm just not too good at waiting. My cell phone is sitting in front of me and anytime someone texts or calls me, my heart goes into my stomach. When I see it's not the hospital, I have to remember to breathe.

Fuck.

In 4 hours, I could be relieved or be devastated.

And it's not fair to come back and tell me "there is nothing wrong with a baby with Down Syndrome".

As a matter of fact, yes, yes there is.

~ 75% die in utero.
~ gastrointestinal abnormalities
~ hearing loss
~ sight disorders
~ hightened increase for leukemia
~ thyroid disorders
~ 60% will get early Alzheimer's
~ congenital heart disease
~ developmental delays - IQ scores range from 20 (severe mental retardation) to 85 (low normal). Overall learning abilities are usually equivalent to a 6 to 8 year old child without Down syndrome.
~ 15% death rate in first year of life
~ 50% death rate in first 50 years.

No, I am not looking at it as my child won't be "perfect", whatever that means. I don't care s/he'll be behind or will look different. I'll tell you why I'm terrified. I'm scared to death my child is going to have to have a life full of very serious medical problems. And ~that~, my friends, is why I'm worried.

14 comments:

Trace said...

Oh, Nancy, there really are no words. I have no doubt you will love this child no matter what.

BethH6703 said...

And it's a very understandable - and valid - reason to be worried.

I'd be jumping @ my phone, too hon.

Just letting you know that I'm here waiting with you.

Deb said...

and those of us who care about you are worried with you. you dont have to explain yourself to us, that is a tough road for both child and parent (I have a niece with Downs) and you have every right to be concerned.
I hope everything comes out well. Deep breaths, deep breaths - not so deep that you hyperventilate though ;)

JamieD said...

And it is a valid worry. No one wants to see their child go through that.

I hope you get good news quickly.

Anonymous said...

Totally understandable, Nancy. I would be feeling similar feelings. Remember hon, the odds are still in your favor. Sending tons of good wishes and healthy baby vibes your way.

--Kristin

Sara said...

Don't blame you one bit for worrying. Nobody wants their child to face a lifetime of difficulties. Let us know when you hear something! We are all here waiting with you.

Hollie said...

There is nothing we can say to make it all better. Just know we are thinking about you and wish we could take some of the worry from you onto our shoulders.

Anonymous said...

Nancy, I am thinking of you and will say a prayer for you and your little one. I have been reading your blog for awhile now, but don't comment too much. Do what you can to make the time pass, I wish we could make it easier for you.

--Emily from the STL

Cibele said...

I hope that you get this phone call soon and that they will tell you teh sweet words : YOUR BABY IS FINE!
HUGS

Becca said...

Oh, I am anxious for you - it's after 3:00 here (EST) and I keep checking back to see if there is any news.

Saying prayers for your little bean over and over...

Liz said...

I've been thinking about you all afternoon. I hope everything turns out fine!

Kaci said...

Completely understandable for you to feel what you're feeling. There's not a thing wrong with hoping your baby does not have Down syndrome. Of course you want a healthy baby! Waiting & hoping with you. (((hugs)))

the mol said...

Nothing wrong with being scared for your child's health and hoping that he, and you, don't have to go through the craziness that is a chronic condition. Glad that it seems to have worked out.

My son was diagnosed with a Wilms tumor (one of the "good" types of pediatric cancer) and it's going to be a pretty long road although we are pretty sure that he'll come through it all pretty well.

Motel Manager said...

You've gotten the good news now that your little XY doesn't have this, which is a great relief. My aunt has DS and has had many of these issues - she's low on the IQ scale (which itself presents many issues), has had Alzheimers since she was in her late 40s, and has had major medical issues (heart, vision, hearing, skeletal, digestive, etc) her whole life with many surgeries and hospitalizations. It can be a rough road, and people who say there's nothing wrong with it besides the IQ are way off base. (This isn't some call for widespread terminations -- though I respect the choice to terminate -- but rather a call for people to get information ahead of time so that they can be prepared if they do have a DS baby. It ain't a feel-good Sunday-night movie.)