HEART BROKEN 12/09/09

These past few weeks have been so incredibly heart breaking! It makes you question what the Hell the purpose is for trying! Why fight? Why not just throw in the towel? Everybody else has given up on these children except their families and friends. The government won't award grant or research money. The doctors say it will be at least a decade maybe more til they are even remotely close to finding treatment to extend the life of these children for a few more years. There have been to many innocent lives lost to this battle. A battle their poor bodies never had a chance in hell of defeating. We as parents haven't given up or stopped holding out for hope, so why has everyone else? IT'S NOT FAIR! NOT AT ALL! I don't want to lose my child. She is supposed to grow up, get married, start a family! It's heart breaking to hear her say "I wish I could be a teenager" and tell her she will while fully aware that this will never happen. Why is this happening? The girls Pediatrician said that Matt and I need to sit Rebecca down and tell her what will happen with Megan. How do we do that? How do you tell your 8 yr old that her baby sister will die one day far earlier than she should? How do you protect your child from the worst possible thing ever when you have no clue how to protect yourself? Do you freeze your heart so there's no pain? Do you have a tap to turn off the tears? I don't want to "prepare" my Abecca for her sisters passing! Her parents aren't prepared! Is there a manual or a check list to follow, to guide you? So you don't hurt your child anymore than she's going to be hurting? This is devastating! Matt and < thought that as long as Moo didn't get really sick we were in the clear. But no, apparently she can take a turn for the worse from a simple cold? She can't have flu vacc. because her immune system is shot! Do you put them in a BUBBLE? God I beg of you, please help my babies, please help my family! We need a miracle cure because the band-aids don't or won't work anymore! Momma's love and kisses can't make this boo-boo go away for either of my girls! PLEASE WATCH OVER THEM AND PROTECT THEM! PLEASE I BEG OF YOU