This has been saved as a draft for sometime. I was asked again this weekend why the fund raising is so important. The reason isn’t so pretty.
Sept 28, 2010
Someone asked me this weekend why fundraising is so important to us. The short answer is that there is incredible research being done right now that could make a huge impact on the lives of children born with this horrible disease. Unfortunately that research and getting through all of the red tape of the FDA is very expensive. Funding is desperately needed.
The second part of my answer I rarely voice to anyone. It has to do with this little angel that lies sleeping next to me in his crib. I am listening to the rhythmic shwoosh, shwoosh, shwoosh of his bipap machine as I type. This machine helps his little body breath easier so he can get some much needed rest. I can’t help but look up every couple of seconds to check the “numbers”. He has a pulse oximeter (pulse-ox) that tells me that his oxygen saturation level is currently at 95 and his heart rate is right around 105. These are good numbers, not great, but good, I would prefer the oxygen to be a couple of digits higher but we are far from danger. When the numbers are good the day is good, but when they are not good the day can be extremely bad. On the really bad days we have gone to battle.
I realized for a fact a couple of months ago that death is residing at our doorstep. I wish he was waiting for me but he isn’t, he is waiting to take this sleeping angel home. We are not ready for that to happen and have done battle on more occasions than I care to mention. OK, we have battled 36 times by my count. Death has somehow slipped into the house without permission and tried to take him. He will not be getting permission from us any time soon. Jadon isn’t ready and we are not even close to ready.
Jadon has what we call “episodes”. These episodes will start with his heart rate dropping and then his oxygen saturation will follow. When these first started happening we didn’t know the correlation of the heart rate and would not react until the oxygen dropped. The oxygen drops really really low. The seconds that we unknowingly waited were crucial in him bouncing back. I grew up watching a cartoon called the Smurfs. The Smurfs were these cute little blue creatures. When your child turns any shade of that color it is anything but cute.
So why do we want to raise money to find a cure when it will likely not come in time to help Jadon? Because no parent should have to stand toe to toe and fight death off of their child. No parent should ever have to wonder when their efforts will not be enough. Because there should not be an industry needed to make little caskets. Because no matter how much energy we put into getting him better we can not save him. By putting our energy into finding a cure we feel like better parents.