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.