Some of you already know that my son, Joey, was born in April 2004 with Mitochondrial Encephalomyopathy. September 15-21, 2013, is Global Mitochondrial Disease Awareness Week. Across the globe, this week will be marked with various efforts all designed to raise awareness about mitochondrial diseases. http://www.umdf.org/ In honor of Global Mitochondrial Awareness Week, I’m sharing a few videos of my little boy, Joey, and his battle with Mitochondrial Encephalomyopathy. What you are about to see took place from October 2009 to February 2010.
Lack of understanding about this disease is one of my biggest frustrations. I made the videos below after Joey slipped into a coma in 2009 after his O2
levels dipped into the 50’s at school. A rude and ignorant mom at Joey’s school called DHR and told them I was neglecting Joey and knowingly brought him to school sick that morning. We had never spoke before, she never asked me any questions, she just assumed. So, instead of being with my son while he lay comatose in the ICU, my entire family was interrogated by DHR employees for hours. Of course, the case was closed as quickly as it was opened, but it prompted me to make the videos below to show how quickly things can change for children like my Joey. The video is in three parts and it chronicles Joey’s coma and recovery from October 2009 to February 2010.
There is absolutely nothing more frightful than ignorance in action – nothing.
This next video was made during weeks 2, 3 & 4 into Joey’s coma. This is where I learned how powerful touch, sound and familiarity can be to a child’s recovery. While the doctors hadn’t given up on Joey, their outlook was dim. Joey wasn’t waking up and machines were breathing for him. I made the decision to have him moved to a room out of the ICU where friends and family could come and visit for a short time and possibly say their last good-bye to Joey. Just like his mama, Joey is a very social little spirit. He thrives when those he loves are near him. So if this was going be the end of his life on Earth, he was going to be surrounded by loved ones, not machines that beep and doctors that only saw him as a patient with a terminal illness. The doctors approved my decision (like they had a choice) and Joey was moved to a very large room. I made it very clear that during this time there was not going to be a limit on the number of visitors he had or the length of their visit. There is a time and place for rules and regulations, this was not it.
Just watch what happens when people start coming to see my little guy – it’s like witnessing a miracle. The look on his face when he sees his sister for the first time in two weeks still gives me chill bumps. Those two have always had a very special bond and it was never more evident than on this night.
Below is the third and final video highlighting his coma in 2009.
After 49 days in the hospital, and just one week before Christmas, Joey was finally able to return home. Sadly, Joey was rushed by ambulance early Christmas morning when he began having difficulty breathing. (pay close attention to the photo in this video that was taken on Christmas Eve, then look at the one taken just 18 hours later – that is Mitochondrial Disease at its worst – in just hours my Joey can go from healthy to fighting for his life). In the ER, his O2 was in the 60s and one lung had collapsed – Joey had pneumonia. After one week in the ICU, Joey was able to return home, although he was very weak and lethargic. Joey slept for almost a month, recovering at home. Then, one day, Joey just opened those beautiful brown eyes, smiled and was back to his mischievous little self. Like so many times before, Joey fought hard and the power of prayer prevailed. In February 2010, Joey returned to school after being away for four months. The welcome back celebration was one of the happiest and most emotional moments of my life. I’m so fortunate that my little guy is able to attend such an amazing school that is tailored for children like him. Oh, and the Auburn shirt you see him wearing, that was for his teacher at the time who happens to be a huge Auburn fan. Yes, it was painful to put the orange and blue on Joey – but every now and again you have to bite the bullet and step out of your comfort zone. That was three years ago…so I think that’s enough discomfort for this decade.
Joey celebrated his 9th birthday this past April and continues to be the happiest kid I know – smiling each and every day, regardless of how he feels. We could all learn a thing or two from my little boy. I know I have. Joey continues to attend school two to three days a week for a few hours each day. His loves continue to be sharks, Alabama Football, the 49ers and anything at all to do with the movie “Finding Nemo”. He has his mama’s Sicilian stubborn streak, and that Italian temper when things don’t go the way he wants. He is strong-willed, loves to giggle and has a thing for blondes. Despite the many limitations life has dealt him, Joey just seems happy to be here and maybe that’s an outlook on life we should all have.
Hopefully this small peek into our world will silence those who continue to judge me regarding Joey’s care, while at the same time raise awareness about this horrible disease that will one day take my little boy from me. But there are always going to be haters and there are always going to be those who think they could do it better or different. If you are completely honest with yourself, do you really know what you would do in a particular circumstance until you have experienced it yourself? And not just experienced it, lived it each and everyday, year after year? No, you don’t. I certainly wouldn’t have known what to do in this situation ten years ago, but now it has become my life – and I’m doing a damn good job of giving my little boy the best life possible while he’s here. How easy it is for us to judge someone else on how they do something, assuming we know better when in fact, we haven’t a clue as to what they are going through. Be careful my friends, because if and when you do this, you are judging a person’s actions on what you think you might do in that situation – you are assuming. When you actually have no idea what you would do because unlike them, you are not living their life, you are not
having to make decisions based on their available choices. And while some parts of my life resemble that of an open book and people like to assume they know everything about me, I can promise their sweet asses they don’t know my entire story.
Ah, but one day they will and the bookstores won’t know whether to place my book in the section marked suspense, comedy, horror or ‘OH MY GOD, NO SHE DIDN’T!
“Sometimes your light shines so bright that it blinds people from seeing who you really are.” ~S. Alder