There was a time when I couldn’t imagine having a child. Then there was a time when I couldn’t imagine having a daughter. Then there was a time I could easily imagine years filled with playful laughter and fun with Daddy’s little girl – and she would always be just that.
Then there was SMA.
“There’s nothing you can do.”
“Take her home and love her.”
“Just because we CAN do certain things doesn’t mean we SHOULD.”
“There’s no data to support that.”
“It’s not medically necessary.”
“Are you sure you want to do that? Why would you want to do that to a child?”
“She probably won’t live to see age two.”
These are doctors’ words. They echo throughout the SMA community. They are words of fear, defeat.
“You will soon know more than your doctors about SMA.”
“Don’t trust the doctors.”
“SMA parents know their children better than any doctors.”
“Advocate for your child.”
“You need to tell the doctors what to do.”
“Your doctor is wrong.”
These words also echo throughout the SMA community. They are words of empowerment, hope.
Newly diagnosed families are flooded with conflicting opinions and advice at a time when they are already lost, confused, traumatized, and afraid. Our family was no different.
If you intervene, are you prolonging life for its own sake? Will you cause more harm than good? Is it best to let nature take its course?
These are enormously important and infinitely deep questions that needed answering very quickly after being told Getty wouldn’t make it past two. We managed to answer the question fairly quickly though, with a vow to give Getty the best quality of life possible in whatever time she has with us. “As long as she’s happy, we’re doing the right thing.”
Getty’s second birthday is a huge milestone. It’s a sigh of relief. It’s an opportunity to celebrate life and love of family. It’s a time to look into her eyes and admire our sassy little fighter. It’s a time to give a huge middle finger to her obstructors and naysayers. It’s a time to reflect on life. It’s a time to thank all those who helped get her here – thank you! It’s a time to honor my wife, Getty’s wonderful mother – both the nurturing mom and the dragon mom. It’s a time to re-imagine visions of our future … GETTY’S future.
My girls are beautiful, intelligent, wise, and strong. I love them so much and can’t wait to see what tomorrow will bring. Daddy’s baby is now Daddy’s little lady, and she’s beating the odds every day.
Getty’s happy. We’re doing the right thing. With love and pride, we hoot from the mountaintops …