It is with a heavy heart that I write tonight. Mark received the phone call today that we knew was coming but dreaded to get. Our neurologist called with the blood work results. Our little Getty has SMA. This week we have been gearing up for that call and we really thought we were prepared, as much as we could. And still our hearts were very sad and felt like life had dealt our little girl an unfortunate hand.
Getty’s diagnosis has changed our lives forever. We will never be able to go back to what once was. But now after reflecting on how far we have come as a family I am proud of our little girl. She is only 4 months old and she has done more in her life so far than a lot of people will do in a lifetime. She has brought her mommy and daddy closer together, she has unified her extended family to fight for her, she has convinced even the most stubborn to live in the moment and she has singlehandedly touched people who have never met her to want to be better people. I am so proud of you little owl.
I came across this quote and I thought it would be worth sharing. “May you live everyday of your life”