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“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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