This week is Mitochondrial Disease Awareness Week. It's making me think about Aly and what we are currently going through and what she may go through in the future. Mito is a very difficult and temperamental disease. It's a day to day illness, just because she is acting fine today doesn't mean she won't be unable to get out of bed or be in the hospital tomorrow. If she is on a good streak I tend to forget what her little body is going through everyday, even if she looks fine on the outside. I think it's great to read about Mito and be educated on the disease but it scares me to do so. The more I read about it the more scared I get. Although I am not in control of the progression of her disease, I don't want to think about what the future may hold. Just because we trust Jesus with our entire lives doesn't make Aly exempt from struggles. So far God has not chosen to heal her. I am not upset about that. Some people get upset at God and their faith falters if they do not get the healing that they expect. I truly believe that Aly is a little miracle right now in her current condition. If you were to look at her on paper, the list of diagnosis, secondary diagnoses, and things they say she should not be able to do, would shock you. I could list 10-15 things that is "wrong" with her but by watching her run, jump, squeal, laugh, etc no one would ever know. That to me is an answer to everyone's prayers.
Mito is different than other diseases b/c kids look fine on a day to day basis. The energy that they lack is not the energy that makes you run and jump but the energy to make their body function. The energy to walk, talk, eat, breathe, heart to pump, stomach to digest food, muscles to move, fight off common illnesses, etc. Things that our bodies involuntarily do. Their cells work overtime to do the job they were created to do. Those cells die off and eventually their systems fail. I am not saying all this so people feel sorry for Aly, I'm saying this to make people aware of this disease that is widely unknown and misunderstood. There is no cure, only temporary management of symptoms. I had never heard of Mitochondrial Disease until Aly was diagnosed. Since then I have heard of and met several others that are going through the same struggles we are. Mito is not as "rare" as we think. There are different severity's and no 2 people are affected in the same ways. There are common symptoms among them all but each individual may have a combination of systems affected.
I don't know what lies ahead in 10 years, 5 years, 1 year, next week or even tomorrow but I am thankful for the time I have with Aly. I will do my best to treat her as "normal" as possible and let her do the things she is capable of doing. Each day is a gift and I will treat it as that.
