With your help, we can reach more families and spread the word that a diagnosis of HLHS is not the end, but just the beginning of a life-changing and rewarding journey.
Our children, both survivors and angels, bring us HOPE for the future of HLHS. Please, share our message so that we may continue to reach out to those in need.
I received such package from these wonderful ladies. I was so lost when we found out about Jasiu, we struggled to make the right decision for our family. I still beat myself up for the fact that it took me a while to decide what to do, though in the back of my head I always knew we would fight for this baby and fight alongside with him. But these women and the online support I found was amazing. Who is more amazing... those kids, those precious warriors who had rough beginnings and are still here being an inspiration to Jasiu and me as well as to newly diagnosed parents that need to know that there is so much hope for them.
You can say Jasiu is one of them, though his journey just began, he's already in the video sporting one of the great and thoughtful gifts from the care package. The side snap onsie, (which I can't seem to find in bigger sizes) are wonderful for the hospital and doctor visits, so that the babies don't get super cold during echos or other examinations. Just having the notebook and pen from Sisters by Heart gave me a reminder that we are not in this alone, that there are many survivors and we need to keep fighting. So thanks Sisters by Heart.
As for all of our readers, you can help too, you can donate to this great cause because CHD's are the #1 birth defect that not many people know about ( I had no idea) and now am getting so involved.
Hopeful Hearts is the name of the support group that was created by the families of CHD kids treated at Hope Children's Hospital in Oak Lawn, IL. I went to my very first meeting today and it was so wonderful. I got to meet a few moms and even a 12 year old girl with HLHS who lives in Plainfield who was such an inspiration to me as well. It's amazing to see her doing so well and we can only hope that Jasiu and all the kids in his age group can do as well as she is. I even met a mom who lives barely 5 minutes away from me with a little one year old also with HLHS. I also saw friends that I connected with before Jasiu was born and helped me prepare. It was nice to be around others who understood what our family is going through in person. This group is really good for many reasons, but my main take-away is that I'm NOT CRAZY, the thoughts, feelings and fears I have are completely NORMAL for the situation we are in. That's a big step forward for all of us as I'm finally adjusting to this new normal and second it gives HOPE as the name suggests.
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