I hope that my friend won't mind me talking about her in my post today, and telling her story. Some people may wonder what the buttons on the right side of my page are for, and why they are there. My sweet friend Rita, who I met while working at the little children's and maternity consignment boutique, recently lost her precious 5 month old baby boy to a disease called Spinal Muscular Atrophy (SMA) Type 1. It is genetic, and there is no cure. SMA is the #1 genetic killer of children/babies under the age of 2, and one out of 30-40 people are carriers (scary, huh?) In telling her story I will hopefully be making some impact on the general public, and hopefully be gaining signatures on the petition, making people AWARE, and if just ONE person gets tested before becoming pregnant, then I have done something.
When I met Rita, she and I just kind of clicked, I knew how great she was from the start. She is a beautiful person inside and out, and does so many things for our community, for people in need, and well, she is just a neat person. Since Eli was so little, and she was working at the store to kind of get a little break once a week for 4 hours, she would leave him at home with his daddy. I might mention here that at the store we are allowed and encouraged to bring our kids to work with us; there is a play area for the kids, and it is just nice to not have to pay for childcare while you work. Anyway, back to Rita. We had a Mom's Night Out event at the store in Nov. (huge sale) and Rita brought Eli in to show him off. It was the first, and sadly, the only time I would meet Eli. I am SO thankful that I did, though. He was such a cute little guy, looked just like his mama. I remember thinking as I looked into his infant carrier what a bright spirit he had about him, he was so content and was taking in everything around him. I was so taken by him, and I let him hold my finger for a few minutes while I goo-goo-gah-gah'ed at him, wishing Raia was still that small. Rita had always thought there might be something going on with Eli, because he was having problems eating. They thought it might be the formula, or reflux, a variety of different things. In early December, the doctor suggested having Eli tested for Cystic Fibrosis. The test was negative for CF. Eli's health continued to decline, and he was put in the hospital just after Christmas. His poor Mommy fought so hard for him; he was being poked and prodded at every turn, to the point he couldn't even bear to see a white coat. He was so tired. Rita was tired. She just wanted to bring her baby home. In early January the SMA diagnosis was confirmed. Devastating news. I was in Alabama when I got the email. I remember coming home and logging onto facebook to talk to Rita. We would stay up late chatting (still do, as a matter of fact) those first few days after I got home from AL. I think it was 7 or 8 days after his SMA diagnosis was confirmed that Rita was finally able to bring him home from the hospital. She wanted to bring him HOME, where they could spend whatever time they had left in a place where Eli was comfortable and a place that was familiar to him. They only got 4 hours. Eli was in his mommy's arms when he left this world, and I am positive there is no other place he'd have rather been.
Since Eli's passing, I have been researching SMA, I have been reading blogs of other families who have children with SMA, and as you read the blogs you see other links to similar blogs and lots of these "buttons"; it is almost like a ladder for you non-computer people. One link leads to another, leads to another, leads to another. In my effort to do SOMETHING to fight this deadly genetic disease, I have added some "buttons" from my favorite blogs. That way anyone reading MY blog can also visit the ones I think are worth visiting (especially the petition one, if you haven't signed it by now, DO SO!). On my right hand sidebar you see "buttons" for Gwendolyn's Blog, one for signing the SMA petition (DO IT NOW!!!), one for Baby Jonah who is dealing with another birth defect called EB, and a few other buttons. I have really gotten to "know" baby Gwendolyn through her parents' blog and have come to love her. She reminds me so much of Raia - she is one month younger than Raia, she LOVES Elmo (and the entire Sesame Street gang) just like Raia does, I think they even kind of look a little alike, but it took me a few months to see it. Visit her blog by clicking on the button to learn more about her journey.
There is one blog that I read sometimes, it is by a mother with many children (biological and foster). She plays a game, I guess that's what it is, called the Glad Game. At the end of each post she makes a list of things she is glad about. I think I may start doing the same thing, because some days it is hard to see the good for all the bad in this world.
I am sorry that this post has been so long, I really just wanted to explain the buttons and tell you what was on my heart. I hope if nothing else, at least you will go sign the petition.
Now, for the Glad Game:
1.) I am glad that my daughter is healthy and happy.
2.) I am glad that I met Rita, and am able to call her a true friend.
3.) I am glad that I was able to meet Eli, and that he has made such an impact on my life (for the good).
4.) I am glad that I have such a great place to work where I can have Raia with me, and I get to meet all kinds of wonderful mommies and babies.
5.) I am glad that I have internet access.
6.) Last but not least, I am glad that Raia loves Elmo; without Elmo, this post would not have been possible!!
Thanks for checking in!
In loving memory of Eli, 8/2/2008-1/14/2009