The day Lucy was diagnosed I was happy. That’s what I feel the most guilty about; being happy. We had been seeing doctors and getting tests done for months. We had been waiting and agonizing while she just got worse and worse. So when they finally called and told us to come in, they had figured out what was wrong, I was happy and smiling and on my way to helping my child.
The final seconds before the doctor came in my husband Josh and I were nervously talking about the color the room was painted. These were the last few moments of life as we knew it and we were wasting it on baby blue wall paint.
I asked the questions, I always ask the questions. I just wish I didn’t have to ask if my child was going to die and I wish the answer wasn’t yes.
One in forty people is a carrier for Spinal Muscular Atrophy. When two carriers have a child that child has a 25% chance of having SMA. I met and married another carrier without knowing it because I never knew I had it. One or both of my parents gave it to me and now I have given it to my daughter. There really isn’t any part of this that hurts any less. Unknowingly giving my child a disease that has robbed her of her ability to walk and will take her life at an early age hurts; it actually physically hurts.
Lucy is 15 months old and we have been told that she will never walk and will be in a wheelchair for the rest of her life, which will most likely not last longer than her twenties. SMA type II children have above average intelligence (which Lucy has already shown us), and I know that she will enjoy her life to the fullest; we will make sure she does. The hardest part is changing our perceptions of what we pictured for our lives.
I just assumed when I had a child that on Christmas Morning she would come running into our room and jump on our bed yelling about how Santa had come. I just assumed that I would shuttle her around to soccer practice and dance class and teach her how to ride a bike.
Did you know they have Wheelchair Soccer… and Wheelchair Ballet? I learned this at the Northwest Chapter meeting for Families of SMA. Swimming lessons are also amazing therapy (I am enrolling tomorrow). I am pulling myself together for Josh, for Lucy, for our parents; but most of all for me. I realized, when it comes down to it, Lucy isn’t any other child. She is stubborn and knows what she wants. She loves to read books, she sings Head, Shoulders, Knees and Toes to herself, she is Lucy Faye Jones, not some other child and with the help of our Family, Friends and Families of SMA, we are going to make sure she lives a long and happy life.
If you would like to help you can donate time, money or stuff at: http://www.fsma.org/Fundraising/WaysToGive/
Families of SMA is a not for profit organization that is currently funding research trials on five different potential cures. Spinal Muscular Atrophy is the #1 Genetic killer of Children under the age of two. FSMA delivers care packages to newly diagnosed families, they have an equipment pool where families can get wheelchairs and car seats, and they have 30 chapters all around the country raising money and support for families just like mine.
As you know today's track is #96 of the mix tape, so I encourage everyone to download the record and/or donate to FSMA, here, to support Getty, Lucy and the families and children living with SMA. This is a disease that every day, comes closer to a cure. We can help, you guys. Let's do this.