Tag Archives: Ignorance

Mitochondria, Miracles & Mindless Morons

Roseanna Borelli

Joey, December 2005

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

Roseanna Borelli

Leaving Children’s Hospital, December 2012

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

Roseanna Borelli, August 2013

That’s me – very proud mama of two amazing kids, Gionna & Joey.

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

Advertisements

1 Comment

Filed under Uncategorized

God did not mean us to be ignorant. He left us this marvelous universe to decipher and understand. ~J. Targett

As much as I hate to admit it, a few years ago I succumbed to the lure of a certain social media website known as FaceCrack, um, Facebook.  I wouldn’t say that I’m addicted to it, but I do log on once or twice each day.   Yesterday morning was no different.  While I was browsing through my news feed, I read a post from a friend that bothered me.  I was so surprised by what she wrote that I read it two more times.

Referring to the Boston Marathon Bombing, she wrote that she was happy she never watched or listened to the news.  She wrote that she was aware that ‘something terrible happened and someone died – that’s it‘.  She went on to write that she didn’t want to know the details of what had happened and even went on to say that those of us that are losing sleep or even (gasp) ‘thinking about this act are giving the devil what he wants!’   Then, her advice was for all of us to turn off our televisions and go on living our lives because knowing all the details of this event was giving the devil what he wants.  Oh, and she said we should pray.  I sat at my computer looking at her words with complete ignorancedisbelief.  Before I go any further, let me say that I’m not judging her, this is how she feels and I respect that.  But it scares me to my very core that there are people like her that feel this way.  People that believe we should  just pretend something like yesterday’s bombing didn’t happen and go on with our happy lives and say a prayer.  In my world, that is not an option.  I don’t think we should spend our every waking moment watching the news and all its despair and tragedy – but it is our responsibility to be informed, aware and compassionate to the events that ultimately shape our lives.   Ignorance is not bliss people, in fact, if you were to use a family tree as a metaphor, ignorance is the grandfather of fear.  And perhaps now we should be afraid – or at the very least, aware and informed.

I think what bothered me most was her comment, “…and someone died”.  Actually, three people died, and they have names.  They were someone’s son, someone’s granddaughter, someone’s classmate.  They were all people who woke up that morning to be part of a wonderful, historical event only to have their lives taken away by some senseless act of terrorism.  Perhaps you should stop reading now, according to my friend, I’m doing what the devil wants by allowing this terrible event to enter my thoughts.  I’m sure the families of the deceased wouldn’t want you to know about Krystle Campbell, who was only 29 years old. I watched with tears as her grandmother described her in an interview.  Krystle’s grandmother said that her granddaughter often went to the see the marathon runners. “She’s been doing it since she was a little girl,” Lillian Campbell said.  “She didn’t miss a marathon, watching it at the finish line.”

Then there was the Boston University grad student who was killed by the blasts.  All we know about her is that she was from China.  China’s consulate in New York announced that she was a Chinese national and at the family’s request, the consulate did not name her.  We do know that she was a graduate student in mathematics and statistics at Boston University who was due to get her master’s degree in 2014.  She graduated from a Chinese university with a degree in international economics.  

And this is what hit me the hardest.  A sweet boy who loved the Red Sox and playing in his yard with his sister (who lost her leg in the bombing).  His name was Martin and he was only 8 years old, about the same age as my Joey. He attended the marathon to cheer on friends andMartin Richards Peace Sign family.  Last May, Martin made a “peace sign” when his school organized a “Peace Walk.” Holding their homemade signs, kids walked around the city making a big statement with a simple act.  Martin’s sign simply said, “No More Hurting People”.  Martin’s father said this yesterday, “My dear son Martin has died from injuries sustained in the attack on Boston.  My wife and daughter are both recovering from serious injuries. We thank our family and friends, those we know and those we have never met, for their thoughts and prayers. I ask that you continue to pray for my family as we remember Martin. We also ask for your patience and for privacy as we work to simultaneously grieve and recover. Thank you.”

“Calvin: The more you know, the harder it is to take decisive action. Once you are informed, you start seeing complexities and shades of gray. You realize nothing is as clear as it first appears. Ultimately, knowledge is paralyzing. Being a man of action, I cannot afford to take that risk.

Hobbes: You’re ignorant, but at least you act on it.”

How in the hell can we just turn off our televisions and ignore this?  It isn’t even in the realm of possibility for me.  This is life people.  At its worst it is messy, confusing, heart breaking and at times, even horrific.  But at it’s best it is wonderful, amazing and beautiful and can take our breath away.  We don’t get to just focus on one and not the other. I don’t understand why events like 9/11 and the Boston Marathon Bombing take place, just like I don’t understand why my little boy will never walk, talk, sit or stand.  The “why” question goes back thousands of years. It was asked in the Old Testament by Job and the writers of the Psalms, and it was especially relevant during the 20th century, where we witnessed two World Wars, the Holocaust, devastating famines in Africa, AIDS and the genocide in Rwanda.

I don’t have an answer to the question, ‘why’, none of us do.  But choosing to not be informed or to ignore these tragic events isn’t the answer, I do know that.  I also can’t choose Why?to ignore ignorance.  You might as well withhold medicine from a very sick patient. Not only will the patient get worse, the disease will spread. Maybe ignorance is a coping mechanism for some, I don’t know.  When it comes to life, I’m not a pessimist or an optimist, I’m more of a realist.  I see things as they are. I don’t sugar coat anything and I don’t want the information I seek to be glossed over.  I cannot pretend something isn’t happening because it might be too painful to acknowledge.  Here’s an example using the cliche ‘glass of water’.  The optimist sees it as half full and the pessimist sees it as half empty. The realist sees there is water in the glass.  The optimist is certain that the water is cold and the pessimist figures that the water is warm.  The realist just sees that there is water in the glass.  The optimist believes it is good water while the pessimist doubts it will be good.  The realist simply sees that there is water in the glass.  That’s a very ‘watered’ down explanation, but you get the idea. 

So, am I going to change anything about my life because of what happened Monday?  No, probably not.  I will go to the park today with my little boy and push him around the trails in his wheelchair and watch him as he smiles and closes his eyes when the breeze blows his way.  During our walk, I will say a prayer for all who were affected by this tragic event.  When we return home and while my son naps, I will work in my garden and I will continue to realize that the world we live in now is nothing like the world I spent my childhood in, and I will grieve for this next generation coming up.  This evening I will turn on the news to see what has gone on in the world and then, sometime after 10:00 p.m., I will check on my babies, kiss them both ‘good-night’ and thank God for another day with them.  But I will not go on living my life like everything is all right in the world, because my friends, it’s not. 

“I think we risk becoming the best informed society that has ever died of ignorance.”  ~R. Blades

Leave a comment

Filed under Uncategorized