Tag Archives: Disabled Child

Others have seen what is and asked why. I have seen what could be and asked why not. ~Pablo Picasso

“Measure twice – cut once.”

That simple saying has been my mantra for the past couple months.  I haven’t necessarily applied it as often as I should, but that’s because my mantra for so many years was borrowed from Albert Einstein, “Anyone who has never made a mistake has never tried anything new.”  Lord knows I love to try new things and I almost always refuse to read or ask for directions.  I believe learning from your own mistakes is the best way to learn, maybe not the easiest – but there’s never a dull moment!

My ‘anything new’ of late has been carpentry.  Yes, you read that right, carpentry.  This stiletto wearing, perfect nail polish, big hair diva borrowed a power saw a few months ago and now I’ve morphed into Tim from “Tool Time” – but with boobs and I’m much easier on the eyes.  It began when my backyard gate fell apart – literally fell off the hinges, giving my dogs, Stella & Vinny, their first taste of freedom.  That freedom resulted in me chasing them through my neighborhood at 6:00 a.m. with no makeup, wearing pajamas with little martini glasses on them, a severe case of bed-head yelling…..  “STELL-AHHHHH”!

Vinny is only eight weeks old, and while he likes to do everything Stella does, his little legs were no match for mine.  Ok, that’s not entirely true. Vinny can still be bribed and he returned to me like Baby did to Johnny in Dirty Dancing,  leaping into my arms when he heard me open Roseanna Borellithe package of dog treats. Stella, however, seemed to be channeling the running scenes from Chariots of Fire, (now you have that theme song in your head).  But I digress.

I’m a pretty resourceful gal, but carpentry has never been my thing.  I looked into having someone build and install a gate for me, but quickly realized that unless I won the lottery, this was going to be something I had to figure out on my own.  And that’s exactly what I did.  A quick internet search revealed more than enough ideas to get me started and after numerous trips to Home Depot, I was ready to do this.  Using a circular saw, hand saw, power drill, crow bar, galvanized screws and the occasional swear word – I designed, built and installed a gate all by myself and I have to admit, I’m pretty impressed.  In the end, there were minimal casualties:  one broken nail, two broken toes (I advice against trying to install a gate in the rain) and my “Joe’s Italian Restaurant” shirt now has extra venting after getting caught on a nail – multiple times.  And that folks, is how my love affair  with building things and power tools began.  I’m not sure my friend will ever see his power sawRoseanna Borelli again because, well, I’m in love.

With my gate now complete, I desperately needed a new project.  A few months ago I built a sensory toy for Joey that he could stay in his wheelchair and play with.  This idea was inspired by those toys babies play with before they can walk.  The ones that are shaped like arches and the baby lies on the floor and reaches up for all the toys hanging from it.  Joey loved those when he was younger but now he needed something stronger and age appropriate.  Of course, I could have purchased one for hundreds of dollars – anything labeled special needs automatically quadruples in price, but since that wasn’t an option, I decided to build one myself.  Joey loves to reach for things and is learning cause and effect and I was having a difficult time finding toys that entertained him and held his attention.  So with some PVC pipe, nails and wood – my creation came to life – but that only took a few hours and I needed something that would keep me busy for a few days or even weeks.

10339515_10204194494086897_5055388606809298266_oWhile sorting through Joey’s toy chest one afternoon, I came across a pin wheel that my friend in Louisiana had sent him and I was reminded of a project I had dreamed about over a year ago.  You may remember me writing about the day my little guy discovered pinwheels.

https://tohellinhighheels.com/2013/05/14/often-the-simplest-of-things-bring-the-most-happiness/

I wanted to somehow build Joey a garden full of pinwheels and that’s exactly what my next project would be.  During the past year, any time I had a few extra dollars I would buy Joey a pinwheel and I now had about ten, along with other little things I thought would make him smile and be visually stimulating for his sensory garden.  Using wood from a previous project gone bad, some borrowed power tools and paint from Gionna’s many science projects, I began constructing Joey’s garden.  I didn’t exactly have a plan, things like this seem to come to fruition as I go, taking on a life of their own and that’s exactly what happened.  Some nights I could hardly sleep, I would wake up with a new idea and couldn’t wait for daylight to make it real.  And quite often, I didn’t wait.  Thank God I have neighbors that are heavy sleepers.

Having built several flower beds for my garden over the past three years, that was something I could now do in less than an hour.  So, first I built a basic flower bed and added soil.  From there, I added posts to hang things from, used bright-colored paints and tried to build thisRoseanna Borelli through the eyes of my little boy – what would he find exciting, what would make him smile and reach out in wonder.  That’s all that mattered to me, his smile and happiness. I can’t afford to take Joey on vacations, he will never play sports like other little boys or do many of the childhood things that I wish he could, but I can build him his own little ‘park’ – that I can do.  I have to admit, I felt like a child watching this all come together.  As I ‘planted’ the pinwheels in his garden a few days ago, the perfect breeze blew through and all the pinwheels were set in motion.  I’m not sure why, my but eyes filled with tears, those happy ones that us moms get from time to time.  From the moment I first thought of creating this garden for Joey to its completion a few days ago, took a little over a year – but I think sometimes the things that mean the most to us, and hopefully others, can’t be rushed.  And like so many other things in life, this will be a work in progress.  I would love to add to it as time goes on and Joey’s interests change or he learns new skills.  I want to somehow incorporate water into this area – Joey loves to feel water on his hands and toes.  Maybe even wire his new sensory garden for sound and lights!  I want to use up every inch of remaining dirt in my garden for Joey.  The possibilities are endless and that’s what I love about creating something like this – it’s constantly evolving.

Roseanna BorelliTen years ago, I would never have believed that I would pick up a power saw and know how to operate it, and then actually enjoy it.  Don’t be too impressed though, I had to watch quite a few “You Tube” videos before I knew what I was doing and even then, I said many prayers to St. Joseph, the Patron Saint of Carpenters. I also would never imagine that I would build gates and flower beds and sensory play areas filled with pinwheels.  But ten years ago, God chose me to take care and love the most amazing little boy and He knew I would need to be able to do those things.  And I thank God that He did.  However, I do believe that he puts an extra team of guardian angels in charge of watching over me anytime I pick up that power saw.

“God gave the seed, but he wants the fruits back. Pick the seeds up.Plant the best ones. He promised the rain. It will be a bumper harvest!”  ~Israelmore Ayivor

Leave a comment

Filed under Mia Giardino Bella (Gardening)

Often the simplest of things bring the most happiness…

In Paulo Coelho’s book, The Alchemist, he writes, “The simple things are also the most extraordinary things, and only the wise can see them.”  I truly believe that, well, I have believed that for the past nine years.  My little boy, Joey, just celebrated his ninth birthday and he is among the wisest I know.  You see, Joey just discovered pinwheels.  Yes, pinwheels.  A rather simple toy by today’s standards. It’s certainly nothing fancy, as it is often made of just paper or plastic curls, attached at its axle to a stick by a pin.  It doesn’t require batteries and it can’t even be plugged in.  In fact, to get it to do anything requires a summer breeze or it must be blown upon by a person.  But to my little guy, it was pure magic.

This latest discovery of Joey’s happened by chance, as do most unexpectedJoey Discovers Pinwheels things.  There was a pinwheel in the doctor’s office and out of sheer boredom, I picked it up and began spinning it for Joey.  The look on his face when he saw all those bright colors spinning around was one of the most precious expressions I have ever seen.  Many of us have had the distinct pleasure of experiencing something through the eyes of a child, but when your child is disabled and all of the sudden he finds immense joy in a toy or a song or anything for that matter, well, it makes you stop whatever it is you’re doing and take notice.  I can tell immediately if something is going to really hold Joey’s attention or if it is just going to be a momentary infatuation.  After 45 minutes of spinning that pinwheel for Joey, I knew his love affair with pinwheels had begun.  As we sat in the doctor’s office waiting, I watched Joey look with wonder and then smile so brightly at this toy.  Who knew a toy, that  can be traced back to the late 1800’s, would bring such happiness to a little boy, 140 years later.  Joey cannot walk, talk, sit or stand, but he could reach for that pinwheel and smile and coo as it spun around and around.  So you see, it’s true, the simple things in life are very often the most extraordinary things, at least, in our family they are.  I’m in constant wonder and amazement at what my little boy teaches me every day.  All children, regardless of their abilities, have a sense of wonder and awe that we tend to lose as adults.  I’m so blessed that I get to relive my childhood through my son.

As I sat in the doctor’s office waiting – and spinning the pinwheel – I immediately began planning how to incorporate Joey’s new found love of pinwheels into his everyday life.  I tend to be like a bull in a china shop with my ideas and projects.  Once I get a notion or thought in my head, watch out – because I will do whatever it takes to make it happen, especially if it involves my little guy.  It’s my best and worst trait.  Ok, it’s one of my best and worst traits, but that’s another story for another day.  There are a handful of things I’m passionate about, first and foremost, my children.  After that, gardening.  PinwheelsSo it didn’t take long to come up with a plan that would combine pinwheels and petunias.  Right there in the doctor’s office on that tissue paper they use to cover the examining table, I actually sketched a garden that would be filled with pinwheels and flowers – complete with a path for Joey’s wheelchair.  I could feel the adrenaline – yes, I was that excited.  If you aren’t the parent of a child with special needs, you will not understand what it’s like to stumble across something that your child loves.  Joey cannot tell me, “mommy, I really love (fill in the blank) can we go do/buy/see that”.  I have to rely on trial and error.  I have to hope and pray for those moments, like the one last week, where we discover pinwheels completely by accident.  And when that discovery happens, you will do everything you can to encourage it, to repeat it, to make it a part of your child’s life.  At least, I do.

This new garden already has a name, “Il Giardino dei Girandoli di Giuseppe“.  My next step is to get pinwheels that are weather proof to be placed in the garden.  I’m going to ask friends and family to help make this happen as I feel it will add sentiment to the garden and make it special.  I truly feel like a child on Christmas morning right now, I cannot wait to begin this latest project and then watch Joey’s face when he sees it for the first time. So yes, while having a child with special needs can be exhausting, frustrating and heart breaking it can also be inspiring, magical and breath taking.

I’m learning that not much about life is perfect.  There is no such thing as perfect kids, we don’t come from or have perfect families or perfect partners, perfect jobs rarely exist, but every once in awhile, we do get a perfect moment.  I think maybe the trick is to recognize this and to not only hold on to the memory of that perfect moment, but perhaps we need to try and figure out how to make more of them.  God willing, that’s what I’m going to do.

________________________________

“And I learned what is obvious to a child. That life is simply a collection of little lives, each lived one day at a time. That each day should be spent finding beauty in flowers and poetry and talking to animals. That a day spent with dreaming and sunsets and refreshing breezes cannot be bettered.”

~Nicholas Sparks

2 Comments

Filed under Uncategorized

“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.

w

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?

3 Comments

Filed under Uncategorized