Sunday, September 27, 2009

Welcome to Holland.

So.. since my only followers are people who follow me elsewhere (our forum, facebook, etc), I'm pretty sure you all know by now that my son in my tummy was diagnosed with Down syndrome. I don't know why I didn't choose to update over here... I guess because my head has been in a tail-spin for the past week. I'm going through all these different emotions... I love my son with all my heart, so I'm excited he's on his way. I feel blessed that the extra chromosome decided to show up on number 21 and not one of the other numbers. I'm sad for my son that things won't be the same for him as they will be for my older boy. I'm shocked that of all the pregnant ladies in the world who are my age, weight, etc, that MY baby is the one that ended up having the extra chromosome. How come I can't have those odds while playing the lottery? :) I'm scared to death of not being a good enough mommy, and of the surgery he has to have directly after birth. I have gone through the gambit of emotions in the past week. All in all, even if I go through more, I know my son was sent to me this way for a reason. I know I'm supposed to be his mommy. I'm sad that people choose to abort a baby who has Down syndrome simply because they're not "normal". I know that God makes NO mistakes and that my baby's inmost being was created by Him. I will praise Him because my son is fearfully and wonderfully made. This is no surprise to God, even though it's a surprise to us.
I read this exerpt on another person's blog, and although I haven't "raised" a special needs child YET, I really, truly understand the metaphor.

WELCOME TO HOLLAND
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......


When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.


After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."


"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."


But there's been a change in the flight plan. They've landed in Holland and there you must stay.


The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.


So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.


But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."


And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.


But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Thursday, September 17, 2009

Well....

....

My baby has a 1 in 3 chance of having Down syndrome.

We talked to a genetic counselor first, who went over my blood work with me. He said it came back as a 1 in 10 chance of the baby having Down syndrome. So he did some family history with me (none on either side), etc. The good news in all of that is that my son only has a 1 in 99,000 chance of having Trisomy 13 or 18, or spina bifida.

So the diagnostic ultrasound was next. My son had a few markers for Down syndrome that, if his test hadn't come back positive, they might chalk up to coincidence... but since it DID come back positive, it brought the chances of him having Down syndrome to 1 in 3. The markers were a bowel obstruction, which will require surgery when he's born.... shortened femur and humerus bones (the femur was only about a week behind in growth, and neither of us are very tall, so we could chalk it up to that... but the humerus is nearly 3 weeks behind in growth)... a biggish head (but my "typical" son has a biggish head too, and it wasn't THAT big, just a week or so ahead)... and a place in his heart that they think might be a hole. The doctor said that typical babies have holes in their hearts all the time, and that's kind of a "weak" marker for DS, but since all those other things are playing together... well... yeah.

So my husband and I decided two things today... the first was that we would have our child at OU medical center instead of here in Lawton, because the care is soooo much better.... and the second was that we would go through with the amniocentesis so we could have all our ducks in a row on his birth date, with whatever specialists, surgeons, neonatal intensive care personnel, etc that needs to be there.

So I had the amniocentesis done. That was the weirdest feeling in the world. It felt... like... a huge needle was in my abdomen. Wonder why?

I will get the preliminary results from that in a couple of days (which will actually be Monday since it's the weekend coming up). I will know for sure if my son has Down syndrome by Monday.

Here are things I'm humbled by...
* Ever since my first son was in my tummy, I've wanted to be a stay at home mom. There was no way I could do that with the amount of money it takes to keep our household running versus how much my hubby makes, but it's all I've wanted. I've prayed for it forever. Now, it doesn't even seem like an option to work when the baby gets here anymore. We have no idea how we'll make it on just my hubby's pay. I drive by a church all the time that has a sign out front that they change weekly. A couple of weeks ago, that church sign said "Don't pray for rain if you're going to complain about the mud." Point well taken, God.

* My husband HATES OU (the football team). He had an OU sticker on the back of his pickup that was turned upside down (like the OU fans do to the Texas longhorn). When we got back to the parking garage, guess what was missing? His OU sticker. LOL... we're both humbled by the fact that the team he hates the most has the same name as the hospital we're putting our entire faith in. Will that stop my hubby from wearing his Texas Longhorns shirt next time? probably not. lol

*I catch myself making strong opinions of things I have no idea about. Like the amnio thing. I swore I would never have an amnio done, but I was dumb. I am learning to not make an opinion of anything I don't know anything about.

*If your child has to have a chromosomal disorder, apparently Trisomy 21 (Down syndrome) is the one to have. The other trisomy disorders have extremely high mortality rates. Trisomy 21 does not. I guess I should feel blessed that my son won't be diagnosed with a chromosomal disorder that, in and of itself, will kill him. The secondary things, such as the heart and intestine defects are another story, but people with DS live quite a long time.

I am exhausted. This has been the very longest day of my life. Goodnight.

sleep? what's that?

Tomorrow, I have an appointment in Oklahoma City with a specialist. My blood test came back positive for Down syndrome. It doesn't mean the baby has Down syndrome. It just means the specialist has to look and see for himself.

I need peace enough to sleep tonight. I need peace enough to fully accept whatever is said tomorrow, good or bad. I need to not be such an emotional wreck tonight. Tomorrow is long.

They sent me a voicemail that said the appointment could possibly be 3 hours long. They said to bring a book, puzzle, or something to do for up to 3 hours. I think I will stop by a book store before I go and get a Wally Lamb novel. Or something to keep me interested. I really, really hope that there is not a 3 hour wait. That? Won't go over well with my dear husband. He is THE most impatient person on this planet.

God has created my baby's inmost being. This baby is fearfully and wonderfully made. Just the way he is. Typical or not. Chromosomal disorder or not. Let's just get tomorrow (today, actually, since it's past midnight) over with, k?