Tag Archives: Judgemental

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

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“I may not have gone where I intended to go, but I think I have ended up where I needed to be.” ~D. Adams

When I was about eight years old, my father took me to a carnival.  This wouldn’t have been my first choice of how to spend our time together.  I have never been one to get excited when the carnival comes to town and I have a somewhat unhealthy fear of clowns, but I loved being with my dad.  So if that meant hanging out with questionable characters from every possible walk of life while riding rides that spun me around in circles until all my organs were shuffled and relocated, so be it.  Some friends of my dad’s friends came with us, as did their daughter, who was a little older than me and seemed quite put out that she had to spend her Friday night with an awkward pre-adolescent with glasses and not much to say.  I can’t recall her name, so I’ll call her…..Bozo.

My dad purchased enough tickets for me and Bozo to ride the rides for hours – things were looking up.  My new founded excitement quickly ended when my dad told me that Bozo was in charge and we would all meet up in an hour or so.  I thought to myself that this night couldn’t possibly get any worse but then Bozo quickly grabbed all the tickets from my dad and announced that since she was in charge. she would be choosing all the rides.   That was my first lesson in realizing that yes, things can always be worse.  As Bozo and I set off into the carnival chaos, I remember thinking that it would be a cold day in hell before I let some prissy pre-teen tell me what to do.  After almost an hour of riding all the rides that Bozo had chosen, I told her I wanted to choose a few.  Bozo reminded me that she was in charge and proceeded to list all the rights that came with such an honor.  I’m still convinced she has a genetic connection to Hitler.

While waiting in line for another Bozo chosen ride, she dropped some of our tickets – I wasted no time in picking them up and running off with them.  What a sense of freedom I felt – I had tickets, almost $5.00 in my pocket and no one to tell me what to do.   The world was mine – this certainly must be what it felt like to be an adult.  It was wonderful.  What an idiot I was.

Ferris Wheel WallpapersNot exactly sure what to do with my independence, I got in line for the Ferris Wheel.  I had never been on a Ferris Wheel before and I certainly  don’t remember holding a deep desire to ride one, but I was clearly on my way to adulthood and this must be what adults do – make   decisions sans any thought  as to their outcome.  Yes, I was going to ride this enormous circular structure that was operated by a man who had more chins than a Chinese phone book and had never been introduced to a dentist, a razor, or a bar of soap.  Regardless, when it was my turn, I handed him my ticket and took my seat.   I waited to see who would be sitting with me, but instead, the Ferris Wheel moved in reverse so others could get on.  I thought someone would be seated with me.  I thought someone would be by my side.    This wasn’t at all like I had imagined, but it was too late now to change my mind. In my eight years of life, I couldn’t  remember feeling this alone before and I didn’t like it.

Finally, the ride began and a rush of excitement mixed with a touch of “what in the hell am I doing” came over me.   The unknown was frightening to me and it took about three complete turns of the wheel before I realized that I was going to be just fine.   Closing my eyes, I loved feeling the summer wind against my face. I felt like I was flying, I lived in the moment and it was wonderful.   Then, without any warning, the unthinkable happened, the ride quickly stopped.  I was at the very top of the Ferris Wheel – the highest point and my seat was swaying back and forth. From my vantage point, I couldn’t even see much of the ferris wheel, I felt like I was suspended in the air.  The most intense feeling of fear came over me.  It actually paralyzed me. I closed my eyes and wished that I was at home in my bed with the covers pulled over my head.  Even now, sometimes at the end of a horrible day, I cannot wait to climb into my bed and burrow under the covers. For some reason, that gives me a feeling that everything will be all right when I wake up in the morning.  If only it were that easy.

What I’ve just shared with you really happened to me.   This long forgotten memory found its way into my dreams one night last week and it has been in my thoughts every day since then.  I’m not a psychologist, I don’t know anything about analyzing dreams, but given the past few years of my life, I’m not surprised that one of my earliest memories of being afraid has resurfaced.

I suppose one could use a Ferris Wheel as a metaphor for life.  We start out on our own, a little afraid, a little excited and unsure of what lies ahead for us.  Life goes on, at times monotonous and predictable, other times, wonderful and breathtaking.  And then out of no where, something happens that we didn’t see coming, it’s completely unexpected and we don’t know what to do.  Our world comes to a screeching halt. Everything seems out of our control and it scares us to our very core. This isn’t what we had planned for.  We grasp tightly to what we can, close our eyes and hope that when we open them it will all have been a bad dream, but it isn’t.  We then have a choice – there is always a choice.  We can have faith that this too shall pass and soon things will be moving along smoothly again or we can let what has happened consume us.  Leaving us to live our life in fear, afraid to hope again, afraid to fall in love again, to have faith that things will soon be as they were, or perhaps even better than they were.  The first time something in our life happens that we didn’t see coming, we recover rather quickly, picking up the pieces and moving on.  But repeated jolts, constant unwanted surprises, abrupt, unwelcome changes to our lives – that begins to make us overly cautious, afraid to take chances.  We begin toscreen-shot-2012-12-21-at-9-26-21-am hold on to what is safe and familiar with a grasp so tight that we miss what lies ahead. We second guess instead of taking those leaps of faith. What lies ahead is no longer anticipated and exciting.  The unknown is now frightening and something to avoid at all costs. It takes longer for us to trust, longer for us to try something new.  We may still get on the ferris wheel, but our eyes are shut so tight, we miss out on the spectacular view.  There will always be bumps in life, sudden jolts that toss  our everyday life into a state of mayhem,  but we must remember that it’s temporary, it may not seem like it at that time, but it is.   We have to remember how wonderful it felt when things were going well, the rush of living in the moment and enjoying the breeze on our face, the feeling that everything will be fine again one day.  Because it will.  No, I don’t know that for sure, but I have faith that it will.

This post is longer than I had planned, so if you are still reading, you have my sincere gratitude. I feel as if I’ve reached some sort of epiphany and after what I’ve been through the past nine years, when you reach a point in your life when you realize that you just have to let go of some things and not worry about the unknown, well that’s a rather large milestone, it is for me anyway.   My life has been eventful to say the least.  There was divorce and all the drama that goes along with that. My daughter and I have survived verbal and physical abuse. My little boy has a terminal illness and I’ve watched him suffer horrible seizures, undergo countless operations and have been told during many of his hospital stays that he wouldn’t be coming home.  I’ve been the product of severe media scrutiny, ridiculous rumors and idle gossip.  I have lost friends Don't Judge Me...that I thought would always be there for me, bu t have made new friends that I know I can count on.  It’s been hell, it really has.  But I’m a survivor in every sense of the word –  with a touch of bad ass and a lot of sass.  Yes, I cry, my feelings get hurt, I have felt alone and scared and  sometimes I feel beaten down.  There have been moments where I didn’t think I could go on another day in my life.  But I’m still here and I intend to be for quite some time.  I’m going to get back on that ferris wheel and enjoy the view from the very top.

“…in this world, lots of people will try to grind you down. They need you to be small so they can be big. You let them think whatever they want, but you make sure you get yours. You get yours.”  ~Holly Black

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