Dx: Rigid Spine Myopathy: Birthdays Should Always Be a Time of Celebration!

Seven years ago we were anticipating our third baby's birth. It was a stressful time with the crazy "pastor" stating he was going to burn a bunch of copies of the Koran on September 11th, 2010. My mother came and took our older two back to their house as I was a very weary preggo being almost a week overdue. Finally, during the final quarter of the Gator game Joel and I were watching together, my contractions started occurring every 5 minutes and we were sure that this baby was coming. Thankfully, that crazy loon decided to call off his stunt, so we felt safe to head into Gainesville. We arrived and took the last "before" picture of my huge belly and went in expecting a 10 lb baby to come later that evening. I was hoping to deliver around midnight and make her birthday September 12th, but things didn't go as planned. My water broke at 10:30pm. I told my midwife that my baby would be here in 45 minutes. She laughed.

Joel and I got to meet our nurse. She was an older nurse with almost 30 years of experience. She was chatty which was great for me. My husband is the strong, silent type so this was great for him too. She asked about our older kids. She asked all about us. She also talked about her and her experiences. It was great!

45 minutes later, my midwife came to check on me...to humor me. I was ready to push. Our baby girl was born at 11:15pm. She weighed 6 lbs 15 oz. We were shocked at how tiny she was. She had an Apgar of 9 out of 10. She latched on and ate like a champ right after birth. We named her Josslyn. A J-name for Joel who is also a September baby.

2 months later, I was sad and confused. Our baby did not hold up her head. Our baby had a clear lack of musculature. No pediatrician took me seriously. No one had answers.

Needless to say on her first birthday, six years ago...I was a mess. We still had no answers. Our baby could not do many things a 12-month old is expected to do. I tried, but I could not be happy for her first birthday. Family and friends who knew me then, saw and tried to speak life to me, but I was not able to hear them. I was afraid of what her life would be like as she continued to grow older. What would the future bring? Would she be made fun of? Would she be able to have a fulfilling life?

Flash forward to today...the night before her 7th birthday: She is an incredibly courageous girl! She can do anything. She encourages others with her generosity, tenacity and smiling face. She can walk, climb, run, dance, ride a bike, do yoga, and model. She is an MDA ambassador. She encourages local firefighters. She passes out stickers to people who donate to the MDA. She creates works of art for the MDA Gala. She tells other kids about her G-tube, and how she has a rare form of muscular dystrophy. She is fierce. She is strong. She is a daughter of God. She prays for those who need help and don't know God. She's like a mother to her fellow students and younger children. She thinks of others. She looks for ways to be kind. She is amazing.

I'm thankful for this sweet girl God gave us. We certainly don't deserve her. We will celebrate her with or without electricity in the midst of Hurricane Irma. As she said, "I don't care, as long as I have presents!" She reminds me that birthdays should always be a time of celebration!