Sunday, October 22, 2006

My story

I just realized that I haven't written a post on October being Down Syndrome Awareness month! For me, it's not only a month to promote awareness, it's almost like an anniversary too. I decided to write about when we found out that Joey has Down syndrome as my way of celebrating Down syndrome awareness .

It was one year ago that we found out that Joey has Down syndrome. There I was, only a couple months pregnant and went in for my First Trimester ultrasound. The ultrasound technician was such a pleasant lady showing me different parts of my baby's body when she suddenly got this look of concern on her face. She finished up the ultrasound and left the room. I laid there on the bed confused, "why did she make a face like that? I heard my baby's heartbeat and saw it moving, what could be wrong?" She came back in with the doctor a couple minutes later and the doctor started doing another ultrasound. He went directly to the neck then the face. The doctor looked at me and told me that my baby had a cystic hygroma on it's neck which was a fluid filled sac and that it's nose was smaller than most babies' noses at that gestation. I was so confused, he then proceeded to tell me that there was a good chance that my baby has Down syndrome and that I should go talk to their genetic counselor.

I laid there on the table confused and started to cry. I knew when he told me that, that my baby had Down syndrome. I just had a feeling. I was shaking and didn't know what to do. The ultrasound technician led me into the genetic counselor's office. I sat there in the chair and waited for her to come in.

Once she arrived, she proceeded to advice me on getting my baby tested through CVS or amniocentesis. She also advised me that if my baby did have Down syndrome that I had the option of terminating my pregnancy. I didn't even have the diagnosis yet and they were already talking about ABORTION! There was no way I would ever abort a child. I told the counselor that I needed to go home and talk with my husband before I made any decisions on testing.

I left with a pile of various articles on genetic testing, and down syndrome. When I got out to my car, I went into hysterics. This was going to be our first child and it most likely has down syndrome. I thought that only older woman had babies with DS. I was only 24 years old! I called my boss since I was suppose to go back into work and told her what happened. She told me to go home and take it easy. Then I called my husband and told him, then called my mom and really lost it.

I finally calmed down enough to drive home. I walked in our house and was greeted by our dog. I sat on the couch and I don't think I did much else until my husband got home. We sat down after he got home and talked. We knew the risks with genetic testing but since this was our first child, we decided to go ahead with the CVS.

I went in around the first of October and had the procedure done. And BOY DID THAT NEEDLE HURT!!!

It took less than a week for the results to come in. I had just gotten home from work when the phone rang. My husband wasn't even home yet. I looked at the Caller ID and saw that it was my OB and he was calling from his home. I knew before I picked up the phone what he was going to tell me. He told me that my baby had Trisomy 21 and that it was a boy.

I hung up with the doctor and sat still for a minute before I reacted. I went into complete hysterics. I was uncontrollable. I tried calling my husband, no answer. So I called my mom clear out in Ohio. She made me call my in-laws right down the road so I wouldn't be alone and then tried to calm me down. I finally calmed down a little and got my husband on the phone. In the mean time, my father in law and sister in law came over so I wasn't alone. My husband finally got home and the four us of us sat there and didn't know what to do or say.

I got online and started looking up websites on Down syndrome. The more I thought about it, the less upset I was and I started getting excited, then I realized, "IT'S A BOY!!!" We wanted a boy so bad and we were getting him! Down syndrome or not, it was going to be a boy! We had picked out the name Joseph Patrick after my father in law. He had actually asked me if we were still going to use his name,I asked him if he still wanted us to and he said, "of course!" My father in law has always been our number one supporter and adores Joey with all of his heart. I couldn't ask for better in laws. I love them dearly!

I started reading more and more on Down syndrome. I wanted to educate myself, along with our families as much as I could before Joey was born. I read every article I could find and bought every book I could find. (Of corse, I look at those books now and laugh- they're useless. All of our children are so different, the books barly did any good!)

I found the Connecticut Down Syndrome Congress and we joined immediately. Luckily, we hadn't missed that year's convention yet. We registered and went to it a month later. That day we met so many other parents of children with Down syndrome and realized we weren't alone.

Right after I had Joey, Rebecca from Always Chaos found my blog and that leads me to now. I've made so many online friends through this blog that I can relate with. Thank you Rebecca for finding me!!!!!

I look back on how silly I acted, almost thinking that it was the end of the world and almost laugh at myself. God chose us to have Joey and I wouldn't have in any other way. I have started to dedicate my life in becoming an advocate on Down syndrome and to being the best mom I can be for Joey and future children we will have. I love Joey with all my heart, extra chromosomes and all!


GrannyGrump said...

Oh, I'm a bad blogger! DS Awareness slipped my notice entirely!

I've linked to you.

Michelle said...

And you ARE the best mommy for Joey!! It's funny how you mentioned about wanting and boy and then also about using the name you had already picked out. We both wanted a girl, but we didn't want to find out until I when she was born I was so excited that we did get a girl and then they laid her on my tummy and I knew and thought this wasn't the girl I wanted!! I'm embarassed to admit I even briefly thought about NOT giving her the name Kayla, because that was the name we had picked out for the daughter we were "supposed" to have! Glad I snapped out of that quickly!

SUZANNE said...

Thanks for posting. I remember there was a suspicion my oldest daughter had DS because of the size of her neck. When I found out she didn't at past 20 weeks, the doctor said that it was good because "you wouldn't have been able to have done anything anyway" i.e. abort.

It turns out she has neurofibramatosis and she's on the austistic spectrum.

They fail to mention all the love they bring to your life.

Connie said...

What a wonderful story!

LeslieAnn said...

Beautiful. I love reading these brings back so many memories and I wish we had known then what we know now. I wouldn't have batted an eyelash at the news if I'd known what joy Jack would bring!
Thanks for sharing! I'll try to do the same this week! :)

crygibb said...

Thanks for sharing your story. My nephew who is almost 7, next month, also has DS. He is such a sweet awesome boy, i cant imagine life without him. He is just loved by everyone, he just laughs and smiles all the time, in return making us feel happy to be in his presence.

The Imperfect Christian said...

I haven't posted on it yet either, but with DramaChild in the hospital for two weeks, I have an excuse! I love your post, Joey is so lucky to have you!! And vice versa!!

Christina said...

This is a great post! You had me crying the whole way, but in a good way. It is so nice to have toi get to known all you bloggers around the globe. That has helped me more than anything! And of course you got a little Joey, you deserve nothing but the best.

Anonymous said...

I can't remember how I stumbled here but I'm glad I have. YOur post was beautiful and I too had tears it was so touching. Your little boy seems to have been placed with the right parents, you can always feel the love when ever you post of him.

amy flege said...

thanks so much for telling us your story!joey has a great mommy!!!

BStrong said...

Thank you for sharing something so personal. Your experience was very similar to ours. When my wife had her first ultrasound the nurse got up and left without saying a word only to return with a doctor who told us that there was an echo genic focus on the heart (somthing like that) which is typical for kids with DS. We went for the test and it came back negative for DS. After that we thought we were in the clear until Amanda was born.

Now I can truely say that Amanda added much clarity to our lives.

Great post

Amy said...

This is my first visit and your post is great! What a great Mommy you are! :)

Aunt Jenny said...

Jessica, I am so proud of you and feel it is an honor to be your aunt. I to had tears in my eyes while reading your story. It is hard to believe that Joey is 7 months old all ready. You are the best mommy Joey could ever have!!

Christy said...

I can't believe you think yourself as silly to have a range of emotions about Joey's diagnosis. Surely its normal, and I love reading your blog. You are a marvellous woman.
Christy (sister of Jo - Sheena's mum)

Anonymous said...

Oh what a wonderful post. I apologize for not being a good blog reader lately. I have been so busy with the book, parenting, and just busy in general.

I am so glad our paths crossed as well. :)

P.S. This would make a good entry for Gifts Volume II.

Monica said...

Fantastic story!! Keep up the blogging, you are such an encouraging example to other young moms.