Jack was diagnosed with Cystic Fibrosis when he was ten months old. Three months later his sister Kate was born, she too has Cystic Fibrosis.
Early on, in an effort to help, I was told so many things. "God only gives you what you can handle", "he will be in a better place". I know they were said to comfort me, but what gave me the most comfort, a book written by Frank DeFord. "Alex, the life of a child". Frank DeFord, a sports writer had child with Cystic Fibrosis, her name was Alex. Alex died after a very difficult fight with Cystic Fibrosis. Alex was seven.
Her father was angry with her disease. His book was honest, open and heartbreaking and it helped me. One story he told about his daughter Alex was my favorite. Alex loved everything to do with princesses (just like my kate), but one day she told her father "Daddy I could never be a Princess". Her father asked "Why Alex". She said daddy my crown would fall off when you give me PT. Pt is something you do everyday to a child with Cystic Fibrosis, you pound on their chests to loosen the mucus, in many different positions, many require them to be upside down. Alex was certain her crown would fall off when she was held upside down for her PT.
Frank continued to lend his name, support, and his experience with Alex long after she had died to raise money for Cystic Fibrosis. I met him a year ago and thanked him for writing his book and told him it helped me. He immediately said "things are so much different now", to try and put me at ease. But they are not. We are members of the same club. The club no one wants to be a member of. We left for the hospital to have a baby that had a wonderful future ahead of them.
So to everyone who has read my blog. Thank you. Make a difference, support children's diseases, you are their hope. They are our future.
Thank you from the bottom heart for all the kind words, emails, all the suppport. You make a difference. You are helping.
Mother of three beautiful children. Two with Cystic Fibrosis