So it has been exactly one year since we first heard the words Spinal Muscular Atrophy. What a mouthful, and what does that mean? SMA is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. If you haven’t read Brayden’s story please do so now. As I sit back and look at where the past year has brought us…..a trip to Disney, our first SMA conference, meetings with specialists, meetings with many therapists, using new medical equipment everyday that I’ve never heard of, battling insurance, raising funds & awareness, growing valued relationships, and forming new ones, ect… On top of all that we had our; everyday life, holidays, weddings, Janetzke family reunion, Logan starting pre-school, and losing Mike’s Grandpa (Peterman). Life is not what we expect. As I evaluate life I hear more “make the decisions based off of what you think is best because anyone elses opinion doesn’t mater.” So, we will make the best possible life we can. That is a great lesson for everyone; to be who you
want are, be who you want to be remembered as, be the one who leaves this world a better state than when you arrived. We all have an expiration date, we WILL leave our body behind and let our spirit move on to a new place. I pray to God for help and he answers.
We are blessed to have so many supporters!!!! I cannot begin to explain how grateful we are. Brayden has such an uplifting spirit. He is full of smiles. Our boys are the highlight of our existence. We love them so much, we will do anything for them!
Love and Peace to you ~ Christina
This is so beautifully written and expressed Christina. Well done!!!