Saturday, November 17, 2012
One year ago this month I got the call from Lex's neurologist to inform us of his diagnosis of mitochondrial disease. I very clearly remember being told that it was a diagnosis too complex to go over in a phone conversation and we would need to come into the office to discuss it. The days between that phone call and our appointment felt like years. I went through a whirlwind of feelings. From confusion to disbelief to anger and sadness. I also felt very alone with no one that understood what was happening. Although I have an abundance of supportive family and friends, they were in the same confused state I was. I stayed awake for several days and did nothing but read everything I could find about this mystery disease that I had never even heard of before now. So many questions, how was I supposed to sleep? How did this happen to him? What does this mean for Lex's future... Our families future? Will he even live to have a future? I wasn't getting answers any faster by reading about it online. I was just getting more reasons to worry. We spent his entire life before this taking him to specialists and having every test imaginable with everything coming back "normal". We thought with almost 100% certainty that Lex had atypical cerebral palsy. We thought he had a brain injury from birth and if we worked really hard with him while he is young, we could "train" his brain and he would get stronger and live a long "normal" life. We didn't expect for any of these tests that looked for such horrid diseases to actually come back positive for one. One phone call and our lives were changed forever. Although nothing about Lex had actually changed, knowing his diagnosis completely changed the way we live our lives. We have to allow his body plenty of rest, where we used to push him to his limits to make him stronger. We adjust our schedules to make sure he always gets the time he needs to recover from the day and fuel his body with food. We look at things different now too. Little things don't matter so much anymore. We have less money and more medical bills ( and will for the rest of his life), but as long as we have his health it is worth it. The thing that has changed the most is the way I look at Lex. After that phone call, I started to see him as a victim. He was a fragile little boy that was a victim of life. Through this year I have come to realize that he is no victim and certainly is not fragile. I now see him as the strongest kid I know. One that is brave and attacks life head on. He is an inspiration to me and my family. He has inspired us to spread awareness about his disease in hopes that one day the words mitochondrial disease are as well known and understood as the words autism and cancer. Maybe, one day when another mom gets that same phone call she can enter this new world with the support of people that understand this disease. Maybe she won't have to foolishly see her child as a victim like I once saw mine, but as the hero he is.