A Need for Cures
I am writing this letter for Hope for Broken Hearts. Back in December of 2008 I started following a Carepage about a child who had cancer. Since following that Carepage I have been lead to follow other Carepages and also CaringBridge pages. The majority of them are all children. Some suffer from cancer, some from congenital diaphragmatic hernias, and all the others suffer from congenital heart defects. The saddest part about all these pages I follow is how many of these children have died. DIED! This is only since December of 2008! The oldest child I have read about to die was only 14 years old. I know that I don't know these people, but I feel like I do. When I get updates, at first I get excited - then immediately I get scared thinking that they might be updating with some bad news. I have sat at my computer and laughed, and on too many occasions, I have sat at my computer and cried. What really amazes me is how strong these families are and even more how strong these kids are. I was 7 years old when I was diagnosed as a Type 1 diabetic. Believe me, I have had many days where I wished that I was not a diabetic (mostly when I was young). Now, I sit here and read, and truly think that I was lucky it was diabetes. When I was in the hospital, I remember one of my roomates (I had 3 in the week that I was there) had a hole in her heart. That's how it was explained to me. She was in the hospital because they were checking her heart. She actually had 2 holes in her heart. I now know that these "holes" were more than likely where the septums in her heart had not formed probably. That was back in 1977, and kids today are still being born with these complications. That little girl was in foster care, so I have no idea how she is or if she is now an "angel" too. The whole time she was in the hospital, no one ever came to see her. She was a little girl, and no one came to see her. These defects are not biased, they don't care who has money and can afford the best care. The best care sometimes isn't even enough to save these little babies. They NEED help!!! Can our government help them? They should at least try!!!!! These poor babies, yes babies, have gone through surgery after surgery after surgery. Just hoping that this one will fix everything. Some times the surgery actually makes things worse. What's strange is how so many people refer to these issues as a roller coaster ride. Some days are up, and some days are down. The thing is.....there are a lot of people who love roller coasters. So, how did something that can only be described as pure hell, get described as a roller coaster. The emotional stress that these families are put through. Parents basically living at the hospital, with no clue how long they will be there. Parents having to find relatives or friends to take care of their other children so that they can be with their child who needs them most right now. The siblings who may be too young to even understand why mom and/or dad keep leaving and they aren't taking them with them. The torment these parents go through on a daily basis feeling like they are letting one or more of their children down, simply because there is no way possible for them to be in two places at once. Then I start to feel guilty....am I taking my children for granted. I worry that one day, my children will be diagnosed with diabetes. I bet these parents would gladly trade their children's diagnosis for the diagnosis of diabetes.
The thing that makes me mad the most, is the fact that this is 2009! 2009! Why in an age where technology is so great, there are so many people suffering, and so many kids dying? Why does it appear that our own government doesn't seem to care? Foreign countries have misfortunes, and the United States of America is the first one at their aid! Why can't our government put more of that money toward our own people? Especially when it is for the benefit of our children! Something has got to change, and that something has got to change NOW! This has to stop! There are so many books out there about how the human heart functions, and even all the heart defects that are out there. Yet, no one can explain how to prevent this from happening.
I have been following the Carepages of so many babies/young children who were born with HLHS. Hypoplastic left heart syndrome......half a heart! The part that is missing is the part that does the majority of the work. These little babies are fighting for their lives BEFORE they do anything else. Parents want to comfort their children and make all their boo boos go away. How do you comfort your baby when you can't make the biggest boo boo disappear. Stress is a major factor in just about every diagnosis for anything out there. Insurance companies want people to live stress free lives so that complications don't arise and they don't have to put out more money. Maybe if these little babies didn't have to struggle so much, their parents, their siblings, their relatives, their churches, their carepage followers wouldn't be under so much stress. How many of these people end up needing therapy? Now to mention how much these issues can end up costing. I once read where our government doesn't do anything about finding cures, getting more research, etc. because they have never been affected by these issues. How is it possible that none of them have been affected? There are so many kids fighting for their lives, some of them have to know our government officials.
I have debated unsubscribing to these pages. My friends tell me to stop reading them (I talk about these kids - a lot - by name, like I know them). I can't bring myself to unsubscribe. I feel like there is a reason I was brought to these pages. If that reason just so they had one more person praying for them to get better. Praying for their pain to stop. Praying that they can go home and be with their families. Praying that they can grow up, so that maybe they can be the one to find the cures to make all the children born with the same thing they were born with not have to endure the same kind of hell that they did. Then I will do it! It's the least I can do!!!!!! I read these pages, and sometimes the news is so bad, and you can hear the anguish in their voices as they typed their latest update...and you wish you could jump through the computer and hug them. Tell them it's gonna be o.k. Tell them that it is o.k. for them to breathe. Unfortunately though, I can't do that! I can't give them the "1" thing they want most in life. Reality is....no one can! It's time for our government to show they care, and start fighting for the babies of the United States of America!!!!!!!!!! They NEED to do what they can to make this happen - because it is the least they can do, and they do have the power!!!!!!!! We need some cures, and we need them NOW!!!!!!!!
Cari Johnston