Friday we attended the Annual Building Blocks Conference at WCCC, and I left knowing (and caring) a lot more about a common but rarely talked about issue. We spent the morning manning our booth, handing out brochures and samples to parents, professionals, and leaders in the forefront of Autism and Child Development Research. We spoke with some wonderful people and were able to share tips, information, and a few anecdotes about the GF/CF lifestyle. It's nice to get out to those type of events and meet people who might not otherwise get to hear about our story. But it was the woman at the table next to us who really made my day with her inspiring story.
We didn't really have time to talk for the first hour or so, but I would occasionally hear "ooohs" and "ahhs" over what could only be pictures of a baby (you could tell she was a proud Momma by the look on her face). As the crowd filtered into the conference hall, we were able to introduce ourselves and get a firsthand look at what all the fuss was about. Before her on the red, heart speckled table were what looked like family albums. She explained that she was representing a group called Mended Little Hearts. Her son (one of the most adorable, bright-eyed babies I've ever seen) was born with Down Syndrome and a Congenital Heart Defect, or CHD as it's known to those familiar with the birth defect. She said there were no warnings, or signs of a problem until the baby was born. It was quickly revealed that her tiny son would need a very serious operation before she ever even got to hold him. I'm rarely at a loss for words, but as I listened to her I knew that I could never relate to how that news must have felt as she absorbed the doctors words. So instead, I just looked at the photos. And I understood why everyone was making a fuss over this tiny little person, all wrapped up in wires and tubes and an oxygen mask as he lay sleeping in a hospital crib. The pictures told the story of his open heart surgery at 3 months old, how his doctors stopped his little heart from beating while they patched up the damaged parts and put him back together with stitches half the length of his torso. But none of that was noticeable when you saw his joyful expression in photo after photo. He was one of the happiest babies I've ever laid eyes on (both before and after). He was finally in the clear. The picture of him post-surgery, where he looked up at his Mom holding him for the first time, is something that I don't think I'll easily forget. I was completely invested in this little baby, and his family, and blown away how brave they were and how strong someone has to be to survive that. They had been through hell and back, and that little guy looked like he was loving every minute of everyday. It goes to show how much you should appreciate all that life has to offer, and all that you have. That amazing little baby just turned 3 on St. Patrick's day, and his mom is dedicated to giving hope to other CHD families looking forward to milestones of their own.
The woman explained that the second album was full of other children, on trips to ballparks, and with their friends...doing normal kid things. They all had been born with CHD, and had all been given a second chance to be healthy, happy kids. It was not an album of sadness or being sick; it was a celebration of life! Mended Little Hearts provides not only these children, but their entire families with a much needed support system while they await treatment and during their stay(s) in the hospital. The group raises money for CHD research, and provides comfort to the families via care packages with handmade blankets and other essentials. And the families often give back, donating time and energy to the organization by supporting others going through the same situation. They form a sort of extended family, all caring for one another, checking in, lending a helping hand whenever they can. And this album was about them sharing in the triumphs together, at annual meet-ups and events. She told me that many families stay in touch, even if they live far apart or have different schedules. Some of those babies wouldn't have made it had it not been for cutting edge research and the strength and kindness of the network of support. It was so inspiring to see how important Mended Little Hearts's hard work is!
That's where we come in. everyone should go to the website...MendedLittleHearts.org. Get informed about this issue (1 in every 100 newborns has a CHD) and get involved. We can raise support for the families, and Gluuteny is going to have a supply drive to make sure as many people as possible find out about how wonderful this project truly is. The organization also does walks and community fundraisers! You can write to your legislatures about funding research for CHD! Be on the look-out for upcoming in-store info (I'll post more online soon). If we all give a little bit of hope to these families, it would mean the world to them. Please take a few minutes to check it out and pass along the word! :)
http://www.mendedlittlehearts.org/
Best,
The Cupcake Girl