Monthly Archives: March 2013

“Strength does not come from physical capacity. It comes from an indomitable will.” ~Gandhi

National Seating & Mobility LetterA little over a month ago, I wrote about the nightmare process of trying to get the correct headrest for my little boy’s wheelchair.   What should have taken six to eight weeks has taken almost a year.  After numerous phone calls and e-mails to the local offices of National Seating & Mobility, I went national.  I wrote letters to their corporate offices explaining in explicit detail the run around I had been given for the past ten months and that this kind of service was intolerable.  I gave them twenty-four hours to respond.  I sent the letters via fax and via certified postal mail so there would be no question as to whether or not the letters were ever received.  My phone rang the very next morning.

The voice on the other end of the phone was calm, but not condescending calm.  She seemed genuinely concerned about my situation and after listening to my fifteen minute rant which basically repeated what I said in the letter, but with tears, she promised that she would see why Joey did not have a headrest.  And then she said the words that I wanted to hear, “Joey will have a headrest, please do not worry about that anymore.”  Now, a small part of me, the jaded, cynical part, didn’t believe her.  As a mother of a disabled child,  I’ve dealt with countless issues during the past eight years regarding Joey’s care. There are the interrogations from insurance companies questioning why my son needs diapers (I had to ‘prove’ he couldn’t walk to the restroom – hell, he can’t even sit up or stand), or why it’s medically necessary for my son to be transported to the hospital by ambulance (hmm, you’re right, his lips were blue and his seizures were non-stop, I should have made the forty mile drive myself instead of calling 911).   It’s never easy and it’s almost always a battle.  But there was something about her voice and damn’t I needed to believe that my child was going to finally get his headrest and he would once again be able to ride in his wheelchair.   I’m trying to adopt a new mantra, I want to be able to have faith and believe in everything until it’s disproved.  I want to believe that people are really concerned and do care.  So the decision was made to believe in her and have faith that very soon Joey would have his headrest.

That phone call took place on a Thursday morning.  I anxiously awaited a phone call from her on Friday, but her call never came.  I reminded myself that she was probably researching how in the hell a request for a headrest ten months ago had now escalated to her receiving a letter from an irate,Sophia Loren Waiting emotional and outspoken Sicilian who could make Tony Soprano cry.  So I cut her a little slack and decided to give her until 10:00 a.m. on Monday to call, but not one minute past.  Monday morning arrived and at 9:55 the phone rang.  It was the call I had been waiting for.  She began the conversation apologizing for all of this mess.  She went on to say that she could see from phone and e-mail records where my calls and e-mails went unanswered and the few times they did reply, it was less than informative.  She went on to tell me that the breakdown of communication happened at Joey’s school.  Joey’s physical therapist made the initial request for the headrest and ordered the wrong one.  This somewhat surprised me as she knew better than most how much Joey needed the headrest that is shaped like a horseshoe.  The intense cover-up that took place once the wrong head rest arrived last April leads me to believe that someone knew they screwed up.  Joey’s therapist tried her best to convince me that he would benefit from a neck brace that would help him hold his head up while he was in his wheelchair.  At no expense to me, she even ordered it and put it on Joey.  Nice try – what Joey would benefit from is people listening to the parents, doing their damn job correct the first time and when that doesn’t happen, own up to the mistake and fix it!  With the correct headrest, there would be no need for a neck brace.  A neck brace that severely limited Joey in moving his head and gave him little range of motion.  My Joey can’t speak, but it was very clear how much he hated that brace – he pouted and grunted when it was put on him.  Since he is unable to swallow, he drools quite a bit. That drool would just sit on the neck brace and it gave Joey a lovely rash on his face.  Yes, this was all benefiting Joey quite well.   You know, I’m a pretty classy mom.  But mess with my children, and I will turn into an ass-kicking mama of a nightmare unlike any you could ever imagine.  So that’s what I did.

Apparently, the powers that be at National Seating & Mobility agreed with me.  Joey now has the headrest I originally requested a year ago.  It was recently installed and the biggest smile appeared on Joey’s face when I sat him in his wheelchair for the first time since last August.  His head no longer falls to the side and he has no need for that ridiculous neck brace.  This shouldn’t have taken this long , but it did.  It’s sad really – that a parent has to fight this hard for the simplest of things for the disabled child.  For over six months Joey hasn’t been able to sit up unless someone holds him.   His life has been in his bed or the occasional car ride to the doctor. No walks outside, no play dates in the park – nothing. Imagine never being in the sitting position.  Add to that, the reason you cannot sit up is because some arrogant moron either ordered the wrong part or took it upon herself to order what she thought would be best for you.   I think at their core, things are never quite as complicated as they seem.  I believe it’s the Never-Give-uparrogance and ignorance of others that muddles the situation and often makes them search for a complicated answer to what is a rather simple problem.  I thank God for giving me the strength to never see anything as an  impossibility, especially since I have a disabled child.  Don’t get me wrong, it’s not that I inhibit some super power or that I’m extremely courageous.  I’m just very stubborn, a little bull-headed and absolutely relentless when it comes to the needs of the disabled.   We all should be, for so many of them, we are their advocates, their voices.  And I make sure everyone near and far hears mine.

“It is not enough that we do our best; sometimes we must do what is required.”   ~Winston Churchill



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The only person you really have control over is yourself.

I’m learning quite a bit about myself.  I’m learning that I’m one pretty strong lady.  I’m discovering that I have an inner strength that’s quite impressive and  thank God my daughter has inherited it.  I’ve learned that it’s all right to cry, it’s not necessarily a sign of weakness, but instead,  a release because I’ve been strong for so damn long.  And I’m learning that despite someone’s best intentions to ruin me, he is only making himself look like a fool.  Gotta admit, I’m loving that last one.

ConquerA decade ago, I would have been hell bent on revenge and I admit,  a small part of me still entertains that thought when I’ve been wronged, especially by him.   But with age comes wisdom, at least for some of us, and I would rather embrace the words of  Marcus Aurelius who said, “The best revenge is to be unlike him who performed the injury.”

Actually, having an enemy who is such an idiot is a bit humorous and but even more frustrating.  If I were to seek revenge, I’m not sure how I would even go about it.  He has made it his life’s mission to ruin me, so he must already be miserable and I’m not sure anything I could say or do would make his life any worse than it already is.   I can’t imagine waking up each morning feeling that bitter and angry.  Well, that’s not entirely true.  I used to wake up like that.  And every now and again, I will waste a few moments of my day thinking about all the horrible things he did to my family and still tries to do.  I’m not sure that I’ve completely forgiven him for all the verbal and physical abuse, but my daughter and I have chosen to move on.  We had to, otherwise we would have been chained to him forever and that’s giving him the control he desires – and that is something we will never do again.  It took some time, but I no longer look at our emotional scars as a reminder of all the pain and hurt we suffered, but instead, they show that we survived.  To quote my daughter, we are now ‘two very bad-ass broads‘.

I read the following in a book and I am almost embarrassed to admit how much I love it.  I think we all know someone who we would wish this on…

“May the fleas of a thousand camels invade the crotch of the person that ruins your day. And may their arms be to short too scratch”

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Comfortable Clothes, Religion & Cookies

I started writing this the other night and in my multi-tasking frenzy, forgot about it.  I know you’ve been anxiously awaiting to hear what happens in the wee hours of the morning over here…  

Right now I feel about as sexy as Rush Limbaugh in a thong.  I’m doing something I rarely do – I’m wearing sweats.  I don’t judge other people who wear them, but personally, I feel lazy if I let them cover my body.  I only own one pair and they are black.  The last lucid memory I have before the sweats made their appearance was around 1:37 a.m. when I had a brief, yet intense altercation with Joey’s feeding pump.  This encounter resulted in my wearing the contents of the feeding bag which then led to me putting on the forbidden sweats after I took the world’s quickest shower. I’m not sure it can even be classified as a shower…maybe more of a “rinse & shake”.  Nothing got shaved, but I’m fairly certain soap was involved.  The goal here was to rid myself of the dreaded formula stench and get back downstairs before my little Houdini got into more mischief.  It’s almost humorous to me how all Joey’s doctors label him as ‘severely disabled’.  True, he can’t walk, talk, sit, stand or even swallow, and his illness will take him from me one day, but I promise you, that brain of his functions just fine.  He is mischievous as the day is long and he most definitely has my feisty temperament.  His shenanigans keep me on my toes and I wouldn’t have it any other way.

Hours later, I’m still wearing the sweats.  When my doorbell rang earlier I was convinced Stacy & Clinton from “What Not To Wear” would be behind my front door.  Worse, it was two Jehovah’s Witnesses.  I opened the door and I think they were as sorry to be standing on my porch as I was that I opened the door.  I had a tumblr_mbfbkfaq9y1rprz3po1_500certain, “Bride of Frankenstein” meets Gilda Rander’s Roseanne Rosanadana” look about me.  For added glamour, I had a hint of raccoon eyes with enough baggage under both of them for a family of four vacationing for a month.  Despite my appearance, they wanted to know how I was doing and if they could have a moment of my time.  I love a good conversation as much as anyone so why the hell not.  I proceeded to tell them how I was doing, I mean, they asked so they must have really wanted to know.  I then turned the conversation towards Catholicism and expressed a great interest in their opinion on why the Pope left the Vatican.  I said perhaps the Pope was simply giving up the Catholic church for Lent.  All of this left these two young men speechless, as I figured would be the case.  They told me to have a nice day and walked, rather quickly, away.  Now, before you think I have something against Jehovah’s Witness, I’ll have you know I would have treated a Girl Scout selling cookies the same way.  Ok, maybe not if she had Thin Mints. I really love Thin Mints although I feel there is a huge marketing misrepresentation in that particular cookie.  They will make you anything but thin.

I was a girl scout once – for about a day – I hated the green uniform and I was never one to go door to door selling anything.  I think now they put them through some type of Girl Scout boot camp sadistic sales training course.  Some of those little girls are relentless when it comes to cookie sales.  I very politely told a girl scout ‘no’ last year when she came to my home selling cookies  and she wanted to know why I didn’t like cookies.  I told her I did, but just didn’t want to buy any at this time.  She went on to tell me that the other members in my family might want cookies and Icookies should think of them.  Are you kidding me?!?  This girl clearly had a future as a politician or selling cars. I again told her no thank you and by this time she was deep into her sales pitch.  I asked her where her mother was, as it was getting late in the day and she said she was at home.

No doubt drinking – heavily.

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Each person deserves a day away in which no problems are confronted, no solutions searched for. ~Maya Angelou

It’s been an absolutely exhausting week.  Dealing with idiots usually is a tiresome and frustrating ordeal and lately I’ve had something tossed at me almost daily.  Denials from insurance companies, forms to complete wanting to know if it was ‘medically necessary’ for my son to have been transported by ambulance instead of by car when he stopped breathing last year, drama from the ex, financial woes, and a few lies just to keep things interesting. I’m getting to the point that if I had a day free from stress, just twenty-four hours, I’m not sure I would know how to act.   I don’t want to be that person that is constantly waiting for the other shoe to drop, always skeptical and guarded.  What a terrible way to go through life.  I feel a little foolish wasting my tears on all of this but I think sometimes a person gets to such a point of frustration that dam breakcrying  is the only option left, whether you are a man or a woman – it’s a type of release.  And so the dam broke – this wasn’t crying though, this was weeping and there is a difference.  Weeping involves the entire body and for me it is the result of holding it together and pretending everything is all right for so long that you just can’t anymore.  And usually something quite small breaks me.   My body took over and I had no control, I just gave in to it.

Empty your mind, be formless. Shapeless, like water. If you put water into a cup, it becomes the cup. You put water into a bottle and it becomes the bottle. You put it in a teapot, it becomes the teapot. Now, water can flow or it can crash. Be water, my friend.”   ~Bruce Lee  

I read once that crying helps a woman just like swearing helps a man.  Well damn’t, I’ve done a hell of a lot of both so I should be in great shape about now!

I didn’t arrive at the age I’m at without learning what to do to feel better when all seems hopeless.  For me, it’s an old movie (I’m talking black and white old), a hot drink, a fire and someone to cuddle with.   However, there are rules that go along with this temporary, yet highly comforting, respite of mine:

Rule #1:  I can’t think about anything that is causing me grief;  

Rule#2: The phone must go unanswered;

Rule #3: I have to be able to devote a minimum of 3 hours to my ‘getaway’;  

Rule #4:  There is a dress code – the most comfortable pair of pajamas for all involved.

So last night  I made a bed on the floor in front of the TV with almost every blanket and quilt my mom had made us.  I put my little guy in his pajamas and weIMAG1874 snuggled down for the evening.  Movie of choice, “Gone With The Wind”.  It was in color, but it’s one of our favorites and since I make the rules, I also get to break them.  I love watching my son watch movies.  He always smiles during the scene where Scarlet dances with Rhett at the ball in Atlanta.  And I have to admit, I love her for  bucking the system and dancing with another man while she was supposedly ‘grieving’ over her dead husband.  That woman wanted (and needed) to dance and nothing was going to stop her, especially what others might say or think about her for doing so.  I’m drawn to movies that take place in another era, especially ones that have a character like Scarlet O’Hara in them.  Some might say she portrayed a villain of sorts, mean and greedy.  But there was so much more to her than that. Simply put, she didn’t conform to the rules of society and I adore her for that.  I love being whisked away to a completely different time and place and then seeing which character I can relate to. I need that when things get to be overwhelming in my time and place.  And I just love Mammy and how she handles Scarlet… I think we all need a Mammy.

Of course, nothing in my era changed after the movie was over.  Well, one thing changed, my back was killing me.  How was it that we could lay on the floor for hours when we were kids and get right back up in mere seconds.  I sounded like a bowl of Rice Krispies when I was getting up – everything was snapping and popping.  It was worth it though.  I received some of the sweetest pizap.com13621648889151smiles from my little guy while we watched Scarlet manipulate her way in and out of situations.  Joey is so in tune with my emotions, I think he knew that his mama had the weight of the world on her shoulders.  When he intertwined his little fingers with mine, there were tears again, but these were the happy kind.

I’m very big on visualization – it helps me cope.  For the past year, things have been rough, and at times, almost unbearable.  I’ve visualized myself walking through some horrible catastrophic storm – of course, I’m wearing my signature stilettos and my hair look fabulous.  The storm may subside occasionally, but only to pick up again, often accompanied by gale force winds and golf ball size hail.  But all storms at some point must end and one day, mine will be over.   I picture myself looking back and wondering how in the hell I made it through. And knowing me, there will probably be a small part of me that doesn’t believe the storm really is over.  But you can bet your sweet ass that when I do walk out of this storm, I’ll be a different woman, I already am.  And maybe that’s what life’s storms are all about.  They make us stronger, wiser, they often present new opportunities to us.  Think about it, the brightest bolt of lightening is evoked from the darkest and ominous of storms.

iconic red dress - vivienne leigh gone with the windI’m still going through my storm but in the words of one of my favorite characters, the lovely, high spirited and vivacious Scarlet O’Hara, “…I can’t think about that right now. If I do, I’ll go crazy. I’ll think about that tomorrow.”  And to my haters, and don’t for one second think I don’t know who each of you are and what you think about me,  I have just this to say, “frankly my dear, I don’t give a damn“.


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