Monthly Archives: February 2013

“Above all, be the heroine of your life, not the victim.” ~Nora Ephron

7374813-frustration-just-ahead-green-road-sign-with-dramatic-storm-clouds-and-skySomeone once told me that life is only difficult if you make it that way.  I disagree.   I’m the first to admit that I can sometimes be a hot mess and a touch stubborn, but the events that led up to what happened today could have been avoided if people would just do their jobs – and care.   I should be used to this by now, I’ve been dealing with the health insurance and medical supply companies for almost a decade.  It’s almost always exhausting and frustrating.  Sadly, its continually shocking to me  how insensitive people can be to the needs of the disabled.  And it’s also a little shocking how they  still think they can simply tell me ‘no’ and  that I’ll just go away.

My little Joey was born with a terminal illness, Mitochondrial Encephalomyopathy.   Because of this disease, he is unable to walk, talk, sit, stand or swallow and has frequent seizures and intestines that can barely digest the most basic of formula.   Obviously, there is a great deal involved in his daily care. Obtaining what Joey needs to give him the best quality of life is difficult at best and like nailing Jell-O to a tree at worst.  Today was like nailing Jell-O to a tree….. during a hurricane….. while blindfolded…….with one hand tied behind my back……. while listening to Janis Joplin sing lullabyes.

January of last year, new parts were ordered for Joey’s wheelchair.  Upon approval from the dimwitted senseless idiots at the insurance companies, Joey would soon have a new seat, new foot rests and what we desperately needed, a new head rest.  The head rest was the key item in all this.  My little guy has no muscle tone – at almost nine years old he cannot hold his head up.  I had found the perfect head rest for Joey and couldn’t wait to finally have something that would support his head so it wasn’t constantly falling forward or to the side.  After months of waiting, the parts arrived last spring.  My excitement was short-lived when I saw that the head rest being installed was not at all like the one I had requested.  Let me take a moment and give you a more detailed description of how I felt.  Parents of disabled children mayIMAG5503-1-1 know all too well what I’m about to explain.   Imagine that for months you have planned a wonderful trip to Italy. It is long over due and the anticipation is almost more than you can stand.  Finally, it is time for your trip and after a flight that seemed to take forever, the plane lands and the pilot says, “thank you for flying our ridiculously over-priced airline, we hope you enjoy your stay in Herzegovina.”  I’m not exaggerating, that’s how disappointed I was.  See, children like Joey already miss out on many of the things a typical child is able to experience – things like playing hide and seek, running around during recess, football practice, sleep overs with best friends. So, when one of the few things he really enjoys – sitting in his wheelchair – is taken away from him, that affects me more than I can put into words.   No, that’s a lie,  I can put it into words – it really pisses me off!

This new head rest was smaller than the one I had wanted and it did not provide the total head support Joey needs.  The gentleman installing the headrest said Joey would do fine with it and suggested I order a neck brace to help Joey support his head.  Hmmm, how about you re-order the right head rest instead of trying to cover your mistake with another item we don’t need.   Apparently, that wasn’t an option and let me add, Joey did not ‘do fine with this head rest’.  Over the past ten months, I’ve made numerous calls and requests to National Seating & Mobility to replace Joey’s head rest, but I get the same response each time, “Insurance will not approve a new head rest at this time”.  Finally, last Summer a new head rest was ordered, or so I was told.  Months went by and I never heard from National Seating & Mobility (NSM) so Not ApprovedI called them.  Imagine my shock when I was very casually told, “oh, it hasn’t been approved”.   Really?  And just when were they going to call me and tell me this?  Joey hasn’t been in his wheelchair since August of 2012.  No walks in the park, no trips to the mall to see all the lights and people,  he can’t go outside with me while I garden and I have to carry him if we go anywhere – he is almost nine years old and weighs 45 pounds.  Needless to say, we rarely leave the house.

In December 2012, I again called NSM.   This time I was in tears.  I wanted to know why Joey still didn’t have a headrest.  I was told that the order would be re-submitted and they would call Joey’s doctors to get the necessary letters needed for approval.   On February 25, 2013, I sent an e-mail to NSM asking the status of the headrest – I received no response.  So today, I resent my e-mail – twice.  I finally received a reply.  It was very heartfelt and touching,  it said,

“NOT APPROVED AT THIS TIME”. 

No explanation was given and my follow-up e-mails asking for more details have so far gone unanswered.  I can almost guarantee you that the order was never placed in December.  Yes, I sound bitter and harsh.  Guess what?  I am.  But see, when a claim is denied, a copy is sent to the patient, the patient in this case would be my son.  We haven’t received such a letter and the phone calls I made today to a few of my son’s doctors have revealed that they were never asked to write letters requesting that Joey receive a new head rest.  Let me tell you, hell hath no fury like a mama who has been lied to about something her son desperately needs.

Remember that scene in Terms of Endearment when Aurora has waited patiently for the nurses to give her daughter, Emma,  the pain shot?  She first asks very politely and then proceeds to go a little crazy…. I can relate on so many levels to that type of emotional frustration where my little guy is concerned and I wouldn’t wish it on any mother.  I’ve watched as nurses forgot to give him all of his medications and then tried to tell me that I was wrong.  I’ve stood by his bedside and listened to his nurse call the doctor when his CO2 levels were rising and his respiratory rate was dropping and no one would come look at him.  I’ve been that mom that loses it in the hospital hallway because no one will do what they are supposed to do.  So you have to understand that my level of frustration over this headrest carries with it my having to deal with incompetent people on a regular basis.  Parents of children like Joey are already exhausted, we shouldn’t have to beg and plead for the most basic of things are kids need.

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I have learned through trial and error that when writing a letter that is fueled by emotion, it is best to wait twenty-four hours before sending it.  Yeah, well, that didn’t happen today.  With tears streaming down my face, I began writing and faxing letters to NSM’s corporate offices today.

IMAG1832-1  Since I couldn’t find the name of who my letters should be addressed to, I simply put it to the attention of “Someone Who Cares”. They have until tomorrow to respond.  Then I start making phone calls.  If those aren’t successful, I’ll make the four-hour drive to their offices to get my point across.  Honestly, a part of me hopes it comes to that.  I’ve done it before when Blue Cross wouldn’t cover Joey’s wheelchair.  Right or wrong, walking into a room wearing all black,  stilettos and my Sicilian attitude, seems to get the job done.  They really have no idea who they are dealing with.  I gave birth to both my children without drugs, made a hospital administrator cry when questioned about the below standard care my son once received and I deal with more bodily fluids on a daily basis than some nurses.  I don’t scare – at all.

My little guy probably doesn’t have too much time left, of course, I hope I’m wrong on that assumption.  Joey’s illness is progressive and there have been signs of its progression since October of last year.  So you see, I’ll be damned if Joey is going to miss out on seeing the world from a sitting position because someone didn’t order the right part.   Joey is going to get his head rest – and may God have mercy on anyone who stands in my way of making that happen.

That today has almost ended without me kicking or bitch slapping someone into next week  is a little surprising.  I guess there are days where you just have to embrace your little victories and start again tomorrow.

….I wonder which pair of stilettos I’ll wear?

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“Those who are happiest are those who do the most for others.” ~ Booker T. Washington

She was just a few feet away from me, staring at the array of frozen foods in front of her.  She caught my glance because I thought to myself, ‘how difficult a decision are you really trying to make – mixed vegetables or broccoli’.  This wasn’t a life altering choice that she had to make.  I continued pushing my cart down the aisle and then it hit me – she couldn’t reach what she needed, because she was in a wheelchair – the ones that have the grocery cart attached to it.  I felt so much shame in my previous sarcastic thought.  I walked up to4939930762_7d75bd1dc8 her and instead of asking her if she needed help, I pretended that I needed frozen vegetables and asked if I could get her anything while I had the door open.  The expression on her face didn’t match my question – it was as if I asked her if she would like $1000.

She was an elderly woman, maybe in her seventies, but what stood out about her was her soft gray eyes – she had a warmth about her.  She asked me what kind of vegetables I was getting and I told her they were potatoes with green beans and red peppers.  She crinkled up her face like a small child and told me that she didn’t care much for red peppers.  Then she went on to describe in detail her distaste for cauliflower and jalepenos.  I chuckled and hoped she never had to experience those two together, as that would most certainly be an unfortunate combination.   I helped her with the items she couldn’t reach and told her that I would keep an eye out for her while I was shopping and would be more than happy to help in any way I could. Then she put her hand on my arm.  Without words, I knew what she wanted, she wanted to talk.  She needed someone to listen.  She told me her name was Debbie and she only went grocery shopping twice a month, always dreading it because there was so much she needed help with.  Debbie also told me that she had crippling arthritis and her husband has cancer – they both are on disability.   Her husband has lost most of his teeth, as they lost their dental insurance a few year ago.  She went on to tell me how her husband’s cancer treatments damaged his teeth.  He is on a very special diet and the protein drinks and foods that he can eat are expensive.  Debbie said she tries to eat foods that are inexpensive and filling so there will be enough money to buy what he can eat.   We moved our carts ahead a little and as Debbie looked at the various frozen foods, she said that she didn’t understand why food costs so much money.  My heart sunk when she told me that during the last three or  four days of every month, her and her husband just drink water – there isn’t any money again until the first of the month.

Debbie wasn’t looking for pity, she apologized twice for her appearance, which was unnecessary, but I could tell that many years ago, she was probably quite a looker.  Time and life had taken its toll on her. Something that will happen to all of us eventually.  I told Debbie a little about my situation, about my little boy and his terminal illness and how he too, is in a wheelchair.  But this was one of those instances where I needed to do more listening than talking.  We talked for almost thirty minutes and then I gave her a hug and walked away. A few minutes later our paths elderly wheelchaircrossed again – she had just turned down an aisle when a boy was coming around the corner and accidentally knocked some items out of her basket.  I watched, hoping he or his mom would pick up what had fallen, but that didn’t happen.  I was enraged.  I walked up to Debbie and put all the items back in her cart and  loudly commented on how rude some people can be.  I have no filter and not one shy bone exists in my body.  When it comes to the disabled, whether they be children, middle age or the elderly – I have a zero tolerance policy for mistreatment or neglect.

As I was driving home tonight, my thoughts were racing.  Why, in the year 2013, in what is supposed to be the greatest country in the world, do our elderly get treated the way they do?  How could a couple in their seventies, who both worked for over thirty years, now be living on just water the last few days of each month? I recently learned that in France, children are now legally responsible for taking care of their aging parents if they need assistance.   If something were to happen to their parents, the children are held accountable.   That was made law in the early 2000’s after more than 15,000 elderly people died in France during a heat wave.  Many bodies weren’t discovered until weeks later by their children.  In Japan, elderly family members are treated with immense dignity and respect and will live with his/her family when the time comes.  Children are taught from an early age to respect their grandparents.  In the villages in Fiji, when people become old, family steps in and takes care of them until they pass away.  In the United States, the trend seems to be to put our elderly family members in a nursing home – which I consider almost cruel.  I realized there are situations when perhaps an elderly family member is too sick to be cared for at home by their family.  But these are our parents, they most likely sacrificed ten times over so we could have a wonderful life.  As they age, become less independent, it’s our job, no, our place, as their children, to help them in any way we can.  Personally, I can’t imagine doing anything less.sempre-famiglia--family-forever  You take care of your family, that’s it, that’s all there is to it.  La Famiglia è per Sempre ~ Family Forever.

I read somewhere once that how far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving and tolerant of the weak and strong.  Because someday in your life you will have been all of these.

  “…the moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; those who are in the shadows of life; the sick, the needy and the handicapped. ”   ~Last Speech of Hubert H. Humphrey 

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“All the knowledge I possess everyone else can acquire, but my heart is all my own.” ~J. Wolfgang von Goethe

I don’t particularly care for Valentine’s day.  No, I’m not bitter and yes, I received plenty of Valentine cards throughout grade school.  Actually, I’m a hopeless romantic and love being in love. I just don’t like the idea of the media and Hallmark telling us that once a year we need to profess our love for our significant cupid_deadother.  I’d rather receive flowers for no reason, not because a date on the calendar says it is time to show me how much you care. That being said, I always purchase a card for my mom, godmother, daughter and my little boy.  I blame my mom for this – that woman would send her loved ones a card for Groundhog Day if there was one (and I’m sure somewhere there is) and now I have carried on that tradition.  I love receiving cards via snail mail but it saddens me that sending cards is becoming another casualty of our advanced technology.  Like the lost art of writing, receiving a card in the mail will be something the next generation reads about in the history books.

As a mom, I’ve always enjoyed the homemade cards that my children would make in school.  My daughter is now 18 and will be going to college soon, so the days of homemade cards with hand prints and finger paint are gone.  But she almost always remembers special occasions with a card for me and surprised me this year with a very touching hand written letter commemorating our 18th Valentine’s Day together.  For those of you that don’t know, my little boy, who is now 8, is severely disabled.  A recent progression of his illness has made it impossible for him to return to school.  So there will be no more handmade cards coming home in his little backpack from school.  I realize he never made the cards entirely on his own, he physically can’t, but there was always a part of him in those little cards that he made for me.  Since he isn’t in school anymore, I assumed this year someone in my family would help Joey make a card for me – or even buy one and sign his name to it.  As anxious as a small child on Christmas morning, I waited for the mail to arrive and when it did and there wasn’t a card from my little guy, I was sad.  No, I was heartbroken.  Silly, isn’t it?  We are talking about a holiday almost solely created by marketing geniuses whose mascot is a fat cherub with a weapon.  But none of that mattered.  It was about 10:00 p.m. on Valentine’s Day when I realized that I wasn’t going to get a card from my son.  I was embarrassed by the tears running down my face, but I have a rule that I will never apologize or feel foolish for how I feel, no one should.  Those are your feelings and you own them.  I couldn’t help how I felt, and I know that those tears were much more than not getting a card from my384817_2690790633323_1363220575_33078379_157696294_n little boy.  Some of the tears were because he missed exchanging Valentine’s with his friends at school – and probably would never do that again.  Other tears were because I will never hear Joey tell me that he loves me.  There were tears because I wonder if he understands how much I love him when I whisper to him, “I love you” countless times throughout the day.  A few tears were because I can’t do a damn thing to stop this disease and all the things it has robbed my sweet boy of.  Walking, talking, standing, sitting, swallowing – he knows none of that.  I was crying because I wanted a card from my little guy, even if someone else bought it and signed his name to it – I wanted a card that Joey had at least touched.  Something I could look back on when he’s no longer here.

I read once that life will break your heart.  It’s true.

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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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