Last monday I attended a funeral...for an 11 year old little girl...who had Rett syndrome.
it hit hard. I knew this girl, she was a clinic patient and I had just seen her in January. Families that I have become close to knew her very well...we were all overcome.
Many of the clinic staff attended the funeral along with several of us "rett parents". We leaned on each other, held hands, passed tissues. We cried. I can only speak for myself but I believe we all had moments when we pictured our own daughters in that casket. It was the hardest thing I have ever done. And that is saying a lot because I have also attended the funerals of both of my parents. This was different. It was for a child. A child like my own. It could have happened-could still happen to my Avery.
I sobbed almost uncontrollably as they carried her casket into the church. Her pall bearers were men of all ages, dressed up in their finest with white gloves on their hands. All wore a simple white boutonniere and they stoically sat up front during the service.
Watching her parents was probably the hardest. She was their only child. You could see their pain from a mile away. The only way I know how to describe seeing that pain is gut-wrenching.
It was a lovely service that was well attended. Beautiful songs were played and sung for her. The priest did such a wonderful job-he was sincere, caring and even made us all smile a few times.
We drove in the funeral procession to the burial, the bright orange FUNERAL sticker in my front windshield-a glaring reminder of where we were headed. We arrived at the funeral home where more words were shared and we all sang amazing grace. The pall bearers one by one laid their gloves and boutonnieres on top of her white casket before they lifted her casket into a crypt. We then went outside on a gorgeous day and watched as her family released balloons into the perfectly blue sky. It was very touching.
In my sight line this entire time, was her Dad. He was just so so broken. Gut-wrenching-because everytime I looked at him I could picture my husband in his place-or any of the other Dads I know through Rett and it was almost like looking in a crystal ball. Brutal.
I started working at Katie's Clinic in December. Since then we have lost 2 of our girls-ages 11 and 20. And its not ok. But, it makes us work harder and plan more and watch more and do more. Our girls are trapped in bodies that don't work. And it is all just gut wrenching.