in oct of 2006 my son was born with a rare heart defect. Our large childrens hospital only see this heart defect 1 time every 2-3 years. So we were the lucky ones. In fact, we are the lucky ones. He was diagnosed at 5 days old and had open heart reconstruction at 15 days old. During this time, we stayed in the ICU on a vent for 30 days. We came home on oxygen and a pretty sick kid. However, with a lot of time, TLC and patience, we now have a healthier heart kid.
I am SO jealous of the book of charlie's story that was made by someone special for you guys. I did not know about blogging when this all happened and therefore, I sent out mass e-mails each day. Even to this day, i cannot go back and read them, even though i want to. I want to print them out and save for him, but i cannot go back there, not yet.
I am often thought of writing a book called, Grieving Normalcy. Unless you have gone thru this kind of ordeal, you just do not understand how much it affects the ENTIRE family. Our dtr was 3 when miles was born and she still has some PTSD when we go to the hospital. It changed our family for the better. I am now a part-time SAHM and a Physical therapist. (I could see many sides of your story). You world changes in such a dramatic way, you cannot do "normal" things, like just going out to dinner, or a quick dash to the store. The cost of everything is so expensive and we have great health insurance. (our son's hosp stay was $500,000 but we paid $500 total). We really had to watch out for germs and that is not easy with another kid in daycare. Normalcy has slowly approached our life and therefore the book is less a priority. However, we also work to raise money, but ours is for the American Heart Association. THis year our goal is $10,000, even though we are not close yet. It just seems harder to get people to give this year.
I love listening to all the changes and i am just so proud of you guys as a family. I believe that everything happens for a reason. WE were chosen for this as our jobs as parents, and hey, you guys are doing such a great job. Please check out our blog, http://www.proofofpurpose.blogspot.com/
thanks for sharing, hope to keep in touch
mother of sophia and miles- truncus arterious repair in 2006