A month ago, I had Christy Balcells, Executive Director for mitoACTION (http://www.mitoaction.org/) on the phone. We talked about how Miracles for Mito and mitoACTION can collaborate together in the coming year. It was a good conversation with opportunities hopefully for both organizations.
Before it was time to end the conversation, I asked her what her connection to Mitochondrial Disease was. She told me that her 7-year old daughter is living with Leigh’s Disease, a serious form of Mitochondrial Disease. Christy told her story, and that the doctors hadn’t been hopeful about the future of her daughter’s life. Christy should prepare herself for her daughter loosing skills, and getting worse over time.
For at least a year, Christy was waiting for her daughter to die. If her daughter was going to get worse, it was better to just put life on hold and wait for the inevitable to happen. The thing is that putting your life on hold is something you can’t do forever, and one day Christy woke up and realized that her daughter had actually gained skills in the last year, but she was too focused on her daughter’s diagnosis to even see her progress. That’s when Christy found happiness again, that’s when she decided to create mitoACTION.
As she told her story, I felt as if she was telling my story. When Jacob came home from the hospital after his 50 days stay on a DNR order and with the word “hospice” ringing in my head, I was waiting for Jacob to pass. There were scary days of seizures, Jacob turning blue, and him getting very sick frequently, and needing emergency care very quickly. If you think an ambulance can’t come quickly enough, you know what I am talking about. I understood why the doctors were concerned. I was still getting out of bed each morning, I was still working, I was still smiling, but deep inside I was sad and scared.
One day when I was unloading the car with all of Jacob’s gear, it struck me. It was spring, and Jacob was alive. That was the turning point for me. Jacob was still having the same disorder, Jacob could still die any time, but in that moment it was the realization that Jacob had survived that winter, and we were both here. It was also in that moment that I found happiness again.
Finding happiness is the biggest gift in life. There are many little things you simply can’t sweat any longer, and you learn how to enjoy the little moments in life. Like today, when Jacob wakes up and has a brilliant day like today. He smiles and vocalizes to his music therapist’s voice singing Irish songs. Or Jacob sitting in Denver’s most beautiful botanical garden, and giving up one of his wonderful Jacob sighs. Life is good. In moments like that, I can feel my happiness start deep in my heart.
If you would look at me from the outside, you probably wouldn’t trade places with me, but the thing is, I am happy. I am living the life I want with the people I love. And when you have lost happiness, and found it again, you also have a secure feeling that if you ever loose happiness again, you will be able to find it again.
With love, Maria.