31 for 21... Day 2

So remember, I said I cried that first day. Well those tears continued for weeks... maybe even months. Not because I was sad, or devastated, but because I was scared. I was scared for my baby. Yes, I did mourn the child I didn't have, but that soon ended. Then, I became terrified. What is Bailey's future? Will she live to see her first birthday? You know, she's going to have open heart surgery. Isn't that risky? She's so young, isn't it possible she won't survive the surgery? She survived. She survived being in and out of the hospital for the first four months of her life. She survived one minor heart surgery, and also survived open heart surgery.

Then, I was also scared for her and her life growing up. Will kids call her names? Even worse... will adults call her names? Will she be that girl with Down syndrome, or will she be that cute girl Bailey? At first, I was guilty of making her that girl with Down syndrome. I thought I was doing it all right, and maybe I was, but I've changed my way of thinking. At first, I was telling everyone that my baby has Down syndrome. Now, I realize Down syndrome doesn't define who she is. She is Bailey. My daughter who is cute, sweet, and adorable. I went to a conference a few weeks ago and the speaker had a good point. I don't go up to someone and introduce myself and say, "my name is Tricia, I have a bladder control issue" (I've been told that's normal!?!). So, why should I introduce myself to people and say my child has Down syndrome. Yes, I want people to know. I want people to ask questions. I want to educate people, but that shouldn't be the first words out of my mouth. Yes, people will call her names, they will make fun of her. I will try to educate those people and try to make them understand describing her in certain ways isn't appropriate. Just like the R-word, used by so many, isn't appropriate.

Do I still cry? Yes, I cry after going to therapy with her. I cry when I see her work so hard to accomplish tasks. She worked so hard just to be able to hold her head up, sit up, and now she's working hard just to learn how to crawl. Therapy is a major workout for her. She grunts, moans, and huffs and puffs. She's exhausted and falls asleep immediately after her 1 hour workout. I still cry when I think about her future. I want to protect her, but I also want to teach her to protect herself and in the process educate others.

I'm proud to have Bailey in my life, and I just hope everyone who has the privilege to meet her realizes just how lucky they are to say they know her. My tears now are tears of joy, tears of pride, I'm not longer scared for her.


She made it to her first birthday!

Most children with Down syndrome have mild to moderate impairments but it is important to note that they are more like other children than they are different.

31 for 21... Day 1

As you can see, about a week ago a new logo appeared on this blog. 31 for 21. Well to celebrate Down Syndrome Awareness month, those in the blogging community are taking part in this challenge to blog each and every day during the month of October to raise awareness of Down syndrome. So, I begin day 1 of my challenge...

In October of 2006 I began showing some very familiar symptoms. I was cranky, bloated, nauseous, and just feeling blah! I had that feeling I knew what those symptoms were, but I guess I was in denial. Keith persuaded me to get a pregnancy test. So, of course, I get five! I take one... positive, I take two... positive, I take three... positive. This continues until all five kits have been used. I'm so excited to be pregnant, but also concerned. Keith and I found out just a few months earlier that I was pregnant, and after sharing the good news with family, friends, and co-workers, that pregnancy didn't survive. That was one of the most difficult times of my life, so we decided to keep this little pregnancy a secret. For almost a whole month!

We soon begin prenatal visits with our OB. We have the first ultrasound to show that yes, we have a baby inside. Then, we did labs. Everything is looking great. After a few months the doctor asks if I want to screen for any genetic disorders. I, of course, said yes. I want to know if there's something wrong with my child (that was the old me). Everything came back normal. We had our 20 week ultrasound, which again was normal. Plus we found out... It's a girl! This pregnancy was much easier, medically, than my pregnancy with Aubrey. However, I did have morning sickness from day 1 to the end.

Keith and I felt comfortable that this pregnancy would be okay. We started sharing our exciting news with everyone! We couldn't wait for Aubrey to be a big sister. We went shopping for our little girl, picked out names for our little girl, decorated her nursery, and spent some extra time with Aubrey. We wanted her to enjoy her last few moments as an only child.

On Monday May 7th we arrived at the hospital for my scheduled cesarean. I went to triage where I visited family before the anticipated moment. I was soon wheeled into the operating room. Once I was prepped, Keith was able to join me. Dr. M started doing his job. It's so nice just laying there while someone else does all the hard work for you! Within minutes we heard the sweetest little cries. Bailey Mackenzie had finally entered our lives. She was beautiful!

Bailey was whisked away to get cleaned up and I went to recovery. Once I arrived in my room I couldn't wait to see her. However, while alone, I was greeted by the pediatrician and a nurse. They asked how I was doing, then they told me they feel Bailey may have Down syndrome. Honestly, I had no clue what they meant. I thought I was in the clear. We did all those tests, right? Aren't those 100%?

Bailey arrived soon after and I sat there holding her with tears flowing down my cheek. I examined her from head to toe, trying to see what the doctors and nurses saw. I also had the task of sharing this news with Keith. How am I supposed to tell him our child isn't perfect (old me again)? Well, he took the news fairly well. Not to say he didn't share a tear or two with me, but being the great man he is he found information for us. Information on Down syndrome.

Two weeks after Bailey's birth we received results from the labs showing that she does have Trisomy 21. I had already accepted that, and we were also preparing for her upcoming heart surgery. That, had become priority for me over Down syndrome. Within a few days after receiving her diagnoses Bailey went into heart failure. What had happened to my perfect life?

Now, just 17 months later, I wouldn't change anything about Bailey. Bailey IS perfect! She's beautiful, smart, energetic, and can manipulate anyone who comes into contact with her. Strangers first fall in love with her beautiful blond hair, then her almond shaped blue eyes, then they see her smile. You know... that smile that makes you melt.



91%-93% of pregnancies diagnosed prenatally with Down syndrome in the United States were terminated.

A Little Hello

Everything is going very well, however we are extremely busy! I stay busy with work, school, and family and Keith stays busy with work and the girls. I think the girls are a bit of a hand full for him. Hopefully he can survive the next few years.

Class is very difficult. I'm surviving Math. I'm struggling in Anatomy and Physiology.

Well this is short. I need to nap. I'm working overnight tonight. Blah! I just wanted to give a reminder about the Buddy Walk.

www.firstgiving.com/littlebailey

Trish

(Thank you Meredith and Renee for the image)

Are You Kidding Me?

LA Times article on Down syndrome and abortion. Please click on LA Times to view the article.

School!

Aubrey is in a kindergarten readiness program. Here are a few pics.

Dancing!

These are pics of Aubrey at dance class. Look at those pointed toes! Good job!