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Life lately
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- Posted in Duchenne Muscular Dystrophy
Recently I had an experience that reminded me of how we live our lives. How we do not subscribe to fear (although is would be easier to). How instead we choose to focus on the positive. How we seek out the joy. How we strive to live each day to the fullest. Lately, I have felt that after this incident, our joy was stripped from us. Leaving my heart hurting and heavy. My tears felt endless; my body weak. We took time to feel it and allowed it to sit with us. To feel the cascade of emotions that came along with it- anger, sadness, grief, despair. We slowly began to put ourselves back together. It has taken some time, but the sadness, pain, and grief don’t win. The grief can be there, tirelessly waiting, for another day. Not today. Today I will alchemize my pain into power. Why, because of HIM. He didn’t choose this, he is the one that lives with this disease each and every moment, and he doesn’t get down. He rises up, teaches me so much, and seeks joy in the simple.
Earth School curriculum is learning what works (what increases serenity) and what does not work (what increases suffering) – Liz Gilbert
Connect with me
In 2012 my oldest son, Jackson, was diagnosed with Duchenne Muscular Dystrophy. At that time I had never heard of it and so began this journey. I realized that because of the extent of the diagnosis, I don't have much time with my dear son. I took a year to process, grieve, get upset, test my faith, and then to make the decision of how I would let this affect me. The result is this website, Joy in Jackson's Journey, because I realized that instead of falling down with the pain and heartbreak of my situation, I'm choosing to rise up and face it head on, to fight for my son and to show how I not only survive through this new normal, but thrive.
Our Story
It all began back in January of 2012, Jackson was 3 years old and had a diagnosis of Autism (which I’ll share about later), and I took him to see a Biomedical doctor to try the gluten free/casein free diet and supplements to see if if would help him out. After meeting with the doctor she ordered a routine bloodtest to make sure that there wasn't any underlying disorders before beginning supplements.
A few days after getting Jackson’s bloodwork done, I got a phone call from the Doctor. It is a day I will NEVER forget. First of all, because I knew she was away on a family vacation and she was calling me and #2) because she then said, ”I received Jackson’s labs and I need to discuss something with you”.
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