Oh, September 11th. You are a horrible day for so many reasons. 7 years ago we received the worst news of our lives. Eliza’s condition was not going to improve like the doctors thought. We were up against a completely different beast that would continue to take away all of her abilities. It had already robbed her of so many things by this point and now we were given another diagnosis with a long name to learn. This one was much worse than the previous three. We were essentially told ‘good luck’ and we were not given any reason to hope.
“Not only is it progressive – it’s terminal and there is not a cure…It would be an absolute miracle if she made it to 5 years old” I can remember those words like it was yesterday. That’s when all of the air was sucked out of the room and I struggled to breathe. Our sweet 2 1/2 year old was being handed a death sentence.
However, our sweet and stubborn girl has been out to prove them wrong ever since! She was always so spunky and head strong that I shouldn’t have expected any less. She is now 9 1/2! Her body is frail and I continue to see her decline but we will take each day we are given and be grateful for the chance to learn from her. We love you, Eliza
