Mito… it is a four letter word. It changes life even for those that are mildly affected with it. It rocks the world of people daily. I know of parents that stay up and cry because they don’t know what to do or how to feel. I know that it has parents in tears nightly as their precious son or daughter is no longer here on earth or able to be touched, held, or helped. I know for us MITO stole a ton of things from the whole family. Adam and I had all the 1st taken away, time together and with our whole family, it took away the smile and the love of our sweet precious son. Zach lost the time that he was on earth a ton as well; he had all the normal activities stolen from him. Aden however has lost more than most.
Aden has had stole from him more than I can type. He had his time with his brother, his time with his parents, the stability of always having his family together, and the ability to believe that all is going to be okay. He has learned to be flexible and he is very compassionate. Aden also had his needs placed to the side a bit…Money, time, and energy went to Zach and all of the things that he needed and required. We knew that we would have a time that we didn’t have Zach with us but none of us thought that it would be now. Thankfully we had been preparing him for this and we had great doctors who helped us and talked to Aden like he was a real person. However, it is still hard; we are all pretty much still living sec by sec.
It has been the hardest thing… some things are super hard. Some things don’t bother me this time but the next time it floors me. I have realized that some don’t get it bit that I have to be careful not to wrap up in that moment but to remember that he is Blessed to be with God.