Awesome does not even begin to describe the people and events of today. Annie made a new friend this week and we were able to gift her a new baby doll at her birthday party. It is always awesome to see new people fall in love with my little girl. She has a spark that makes me want to do everything in my power for, protect and love her to the fullest. I believe most people she meets feel the same way.
Today we went to the Southern Saints Brotherhood 10th anniversary event and there were so many amazing and kind people there. I felt Annie weave her special kind of magic and watched her take on even more people that just love her. It made me think about how much my life has changed since I had her. Annie was a wonderful surprise, it was not easy and never will be but she motivated me. When Annie was born, I realized that I was the single person in the entire world that would take on the responsibility for her care and help her to thrive. I did not know just how true that would be.
my journey really began when Annie started showing symptoms of muscle spasms in her ankles (clonus). We were referred to a neurologist and after many different rounds of blood work, x-rays, MRI scans, EEG's and other tests, we were told by the neuro that he "did not know what was wrong with Annie but we would watch it worsen and hopefully find clues". I was devastated by this answer, I could not give up. I spent months researching and consulting with her orthopedic Dr. regarding different possibilities when we finally found it. I just could not figure out how, no- one in our family has ever had HSP (Hereditary Spastic Paraplegia).
Over the next couple of years Annie's conditioned worsened and improved and repeated this cycle. Her cycles of capability led us to believe her growth spurts were causing it and she has been fairly stable since then. We fought for the best physical therapy, the best treatments around and worked with her every day. Genetics was denied multiple times before it was approved. Finally at 6 we had our answer, our guess was no longer a guess but a reality.
Steven and I felt a pull to change our careers to help her more. I wanted to work nights to take her to appointments and he wanted to have a more stable income in a career he could love. I also wanted to be a better nurse than those we encountered sometimes. I wanted to understand medicine so I could understand her disease process and find ways to help her. It did not take us long to decide how we would proceed but in the end we went to nursing school, from business majors to nursing school. We spent the next two years studying and researching as we learned more and understood more. We discovered the benefits of her baclofen pump during nursing school and how to manage it properly. We also discovered this amazing surgery called SDR that eliminates most of her muscle spasms. The surgery will prevent her from declining further due to damage to her body from the spasticity. We can prevent the damage before it happens and keep her mobile and living a wonderful life. Annie will have an improvement in her quality of life, her ability to attend parties with her friends and keep up.
Despite the trials of this disease, this gene that she landed the rare chance of having, Annie lives life to the fullest. She loves everyone, she has moods like any little girl, she laughs about everything and she has a positive and happy energy that she brings into the room.
So, to make a long story short, thank you to all those that love her like I do, seeing the possibilities for Annie's Miracle Foundation, it really makes me smile and appreciate how fast life changes. In 8 years after she was born I changed my life, became an RN (my dream job) and now I am on the precipice of starting a foundation that will help more than just my Annie. Maybe I can put a smile on more kids faces like Annie. Thank you, thank you and thank you!