Tag Archives: disabled

A Prom, A Puppy & Precipitation

Sometimes when I’m first waking up in the morning, still lying in bed and hoping that by some mysterious act of a power bigger than all of us, the coffee will be ready and waiting for me, I wonder what could happen during the course of my day that would be exciting enough to write about.  I really need to stop doing that.

Last weekend was the final prom of my daughter’s high school years.  It was bittersweet for me.  I’m very excited for her as she embarks on a new chapter in her life – the college years, but I’m a little melancholy as this also marks the end of her ‘childhood’ so to speak.  We have the rest of our lives to be adults, 72178_10201186174920798_2117353952_nbut the innocence, magic and freedom of childhood are gone much too quickly.  Gionna’s was taken from her earlier than most.  My daughter had to grow up rather quickly once her little brother came into the world.  If you’ve read my previous posts, than you are familiar with Joey and his disabilities.  Gionna & Joey share a very close and special bond, but he requires around the clock care and there were many times during the past eight years that her wants were put on hold.  When domestic abuse reared its ugly head, that robbed her of the trust and never worrying about a thing that we seem to do as children.  All she has endured and experienced has made her into the amazing young lady she is today – and I couldn’t be more proud of her.  She is strong, opinionated, a little sassy and doesn’t take shit from anybody.  For better or for worse, she is just like her mama.  God help us all.

When her prom date arrived, I went into Gionna’s room to check on her and she looked absolutely stunning.  I was speechless.  And then she did something that I will never forget – she took my hand in hers and wanted me to walk her out into the living room where everyone was waiting.  Gionna held my hand so tight – I can’t remember her doing that since she was a little girl and I was walking her into kindergarten. I thought my heart would burst – I was still ‘mommy’ and she still needed me.  There are moments in our lives as parents that we always remember, not just the typical milestones, but the moments that seem to happen when we least expect it – the ones where time almost stands still, allowing us to take it all in, to commit it to memory because there is no promise that the moment we are experiencing will ever happen again.  If we’re fortunate, each of us has stored in our memory moments like that, the ones where we can recall every tiny detail, the ones we hold close until we take our last breath.

Last week, a local animal shelter announced that it would be closing for two weeks for renovations and they had over fifty dogs that would need temporary homes.  I’m not sure what possessed me to volunteer to foster a puppy, seeing how my life is chaotic at best and a hot mess at worst, but I made the phone call to the shelter and told them we would love to welcome a four-legged bundle of fur into our home.  We were told that we would be given a 20 pound brindle terrier mix.  She didn’t have a Whiskeyname and as soon as we picked her up, Gionna immediately named her ‘Whiskey’.  We’ve had Whiskey for almost two weeks and its been eventful to say the least.  First, there is her new moniker.  I’ve already received a few quizzical glances when I’m outside shouting at 6:00 a.m., “Whiskey, where are you – mommy misses you“.   The latest member of our family is a bundle of energy and our other dog, a beautiful lab mix named Rocco, is less than pleased that we have brought this tiny tornado of a terrier into our home.  Whiskey is playful to the point of possibly being the poster puppy for ADHD.  She has two speeds, fast and faster.  Add to this, I’ve had to crate train her – I won’t even begin to discuss that adventure.  Right now, we’re not sure if we are going to keep her.  I am getting quite attached to her though and I love her spirit and curiosity – but Rocco still hasn’t warmed up to her – and he was here first.

So that brings us to today.  I’ve been up since 3:00 a.m. with my little guy.  We are under a tornado watch and when the barometric pressure changes, Joey’s seizures often increase. When that happens, his intestines become a mess – use your imagination because I promise you, you don’t want me to write about  what his bowels have done today.  I’ll say this, he’s had to have two baths and he is now wearing his fourth change of clothes. The storm is now just a couple of hours away and as odd as it may sound, it can’t get here fast enough for me.  Once the storm arrives, Joey’s seizures will end.  I know how strange it must sound that I’m wishing for a possible tornado to arrive, but until you watch your child suffer through seizures and intestinal issues, you wouldn’t Tornadounderstand.  Since I’m not originally from the South, I don’t become as paranoid as the natives do when an impending tornado is in the forecast, but I am a little worried about this one.  It’s made quite an impact so far in Missouri and Mississippi and all we can do is wait and see if it’s going to unleash its fury here.  I had to giggle when a local meteorologist referred to this as ‘a weather event that could bring possible precipitation’.  Unless he’s planning on selling tickets and beer and this tornado is taking place on a stage, this isn’t an event.   Another meteorologist is calling this a ‘weather situation’ that ‘may bring precipitation’.  Guys, it’s a damn big storm that is probably going to cause some terrible damage.  Once that happens, then there will be a ‘situation’ and we can then discuss how to help those in need.  Maybe we could organize an event to do this.  And really – possible precipitation?  My degree isn’t in meteorology, but when I glanced at the Doppler Radar a few minutes ago, it was all green, which translates into rain.  My favorite forecast comes from Dr. Seuss and it is accurate 100% of the time:

“The storm starts, when the drops start dropping.  When the drops stop dropping then the storm starts stopping.”   ~Dr. Seuss

So now we wait.  Our ‘safe place’ is all ready for us should we need to take cover and for the moment, Joey is calm and watching television.  Ironically, he’s watching the Weather Channel.  It’s his favorite thing to see when we are under any type of severe weather warning.  He absolutely loves the colors of the radar.  In a twisted sort of way it’s a little comical that one thing that is causing his seizures to increase is also what he enjoys watching.  Our family is anything but typical so to me, it makes perfect sense.  And again, it’s all about the moments anyway – and now at this very moment, he’s happy.



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“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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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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“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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