Yep-I'm tired. And not just physically. I'm tired of hearing about another angel earning her wings. I'm tired of hearing about how another Mom has to bury her baby. I'm tired of a Daddy wondering what it would have been like to walk his daughter down the isle on her wedding day. Instead, they now have to plan where to lay her to rest. Instead, they have to "accept" now she is gone and "just move on" the best they can. I'm just plain tired.
I think some people wonder why I obsess over different things. For example, the Children's Miracle network vote not long ago, I had a couple of people say they couldn't wait for it to be over so they didn't get my daily (sometimes 2-3 times a day) reminders to vote for the Children's Hospital. They wonder why I want to raise so much money when they feel they themselves are feeling the stress of the economy right now. Don't they understand? Don't they get tired of it all too?
This is the life of a Heart Family. You get a call or you get an email about a new "Heart Mom" and you do everything you can for her knowing that you've been there too. You may have never met her. You may have never met her family. Yet you have accepted her with an open heart ready to do whatever is needed. Prayers, support, a shoulder to cry on, or to share victories with. Whatever is needed, it is provided somehow, someway!
While it doesn't end with Heart Families, I think we are less heard. CHD research is SO UNDERFUNDED but yet the number #1 killer of children. I am NOT downplaying pediatric cancer. It kills me that kids have to learn about things that some adults can't understand. I am continuiously praying for these kiddos and their families. What I am saying is we need to have CHD research funding equal to pediatric cancer research. I know in our case, we had heard more about chances of Spinal Bifida, Down's Syndrome, Genetic Disorders and Cancer that we had ever heard about congenital heart defects. Some of these same diseases have affected my family and closest friends. No-I'm not down playing them.
What brought all this on? What was the last straw? Last night I was given the news Amelia LeBert earned her wings. She had a heart transplant about a year and a half ago when she was just an infant. She was watching Little Mermaid with her Mom when she left this world. They performed CPR for 45 minutes and could not bring her back.
Kiddos like Amelia are why I'm obsess.
This is who opened my eyes to CHDs and the need for more awareness.
My ways of rasing more awareness are through projects. One of them is Our Letters of Hope for Broken Hearts. While we still haven't heard from Oprah (even after the fiasco with that!), I am excited to report I have been contacted by a local radio station who wants to run 15 second public service announcements on their website regarding CHDs and Our Letters of Hope. They may even mention it on air from time to time! Be looking/listening for it on KHAK (98.1), KDAT (104.5), KRNA (94.1), KKRQ (100.7 The Fox), and 96.5 (WMT). These are all Clear Channel stations. It is a small step but yet a big one!!
Another project I am working on is Cuddles from the Heart. I am doing good collecting blankets for kids in the hospital but I want to do better (when don't I?)!!!! These blankets are for infants to teens so all sizes and styles are needed. They can be homemade or bought from the store. They do have to be new. I am having a blanket making party at my house from 7-8:30 on Tuesday, November 17. If you are interested in this, please let me know if you haven't already. My sister has also started collecting blankets for this project. If you can, please consider what you really would be doing by giving a child a cuddle. Think of yourself when you are sick. I know when I am, all I want to do is cuddle up with the quilt my mom made with love for us. These kids feel the same!
What I'm not tired of? HEARING GREAT NEWS!! One of the kiddos I have been following for quite some had been battling SVT. In common terms you have a very rapid heart beat for extended periods of time. He was an infant when he had his first ablation. His 2nd was just this last Monday. The good news (Ok GREAT NEWS) is his docs could not trigger SVT again after his last ablation. He now has a 1% chance that his SVT would come back!! No around the clock meds, no more monitors, no more...What a great feeling it must be!!
Thanks for letting me vent. Thanks for letting me be tired...