Angels Exist Here on EARTH!

I have always believed in angels; especially the heavenly ones.

But angels come in all shapes and sizes, and can fly into our lives, right here on EARTH, just when we need them most.  I have been blessed by many angels in my lifetime, but have to share one moment that occurred more than a decade ago; however that memory is still so powerful that it can’t happen without the inclusion of an enormous smile and a shiver.

It was a few days after Labor Day, September, 2000.  I awoke at six, as I did every morning- quietly rolled out of the twin bed in which I slept.  My bed was adjacent to my husband’s bed, a hospital bed.  The hum of his ventilator could have easily rocked me back to sleep but I had work to do.  So, I shuffled out of my slippers and night clothes and into my day clothes and clogs.  My husband Kevin was asleep and so was our daughter, Alina then age 8.  Alina would need to go to school in a couple of hours and I would need to help Kevin out of bed, and ready him for a new day.  But at this very moment, I had some quiet time to myself.  I walked into our kitchen where Kevin’s nurse sat, drinking coffee.  I gave her a hug and put on my light jacket.  I drove two blocks to the nearest WaWa and got my regular fix, a hazelnut latte, bagel and newspaper.  Then I sat in my car, radio humming softly and took sips of the hot, creamy caffeine. The bagel and paper remained untouched.  It was too early to be hungry – it was too early to read what was happening in the world.  Instead, I cherished the coffee and enjoyed my solitude.

For those ten minutes, my life was normal.  I was a mother, a wife and worker prepping for my day.  My life, my work, however was anything but normal.

That sacred space, where I could sit and sip and cry -was what I needed at the hour to prep for challenges the day would bring.  Soon, I would be back at home, waking Alina and getting her breakfast.  Then, I would gently wake my husband, who was, for the fourth year, bravely battling ALS or Lou Gehrig’s Disease.  Kevin was now paralyzed, he was unable to speak and he relied on a feeding tube for nourishment and a ventilator to breathe.  The physical Kevin, the one who went skiing, who played touch football, who mowed the lawn and hugged me tight- no longer existed.  Yet, he was my love, my hero and my world and I would gratefully spend the day taking care of him in every possible way.  I would help him to get out of bed.  I would wash his face and his body.  I would raise him with the help of a Hoyer lift and help him onto the toilet.  I would brush his teeth and give him his morning feeding through a tube.  Afterwards, his nurse would provide his medications and then I would start range of motion on his stiff joints.

Before my coffee was gone, when there were no more tears streaming down my face, I gathered my strength and drove towards home.

I looked at Kevin’s nurse, “Is he still sleeping?”

“Like a baby,” she whispered.

So I headed upstairs to wake Alina.

I began my maternal role- with snuggles and kisses and then said, “Good morning sunshine! What do you want to wear today?”

Alina was consistent. She hopped out of bed and smiled.

She looked into her closet and canvassed her drawers.

“This dress and these purple leotards,” said Alina proudly.

She dressed herself.  She didn’t want me to brush her hair and did her best at grooming.  She had a big bowl of cereal and had all of her homework done like the good girl she was and we packed up her peanut butter sandwich and snack and headed to the bus stop.

I encouraged cheerful talk on our walk, but inside my heart was aching.  The calendar said September and that meant Fall, soon to follow- Winter and if getting out as a family was tough in September, it was nearly impossible in February.  I may have been crying for many reasons on that walk, sheltered by my shades, but at that moment I was mourning our many losses as a family, and the enormous loss to come.

“Mommy, answer my question!” yelled Alina.

I had drifted…

“Sorry honey, what did you ask?”

“Do I have piano lessons today?”

“No sweetie, not today.”

I gave Alina a hug, watched her board the bus and waved until she was out of sight.

Alone again, my thoughts returned to just one loss – that summer was behind us and my family had never made it to the beach.

While a day at the beach sounded blissful, it was too much to ask for Kevin. A day at the beach was like running a marathon- an extraordinary event. It would mean having help with us, having medical equipment, keeping the wheelchair and medical equipment free of water and sand, it would mean keeping Kevin cool and comfortable, and it would mean a tough day for everyone involved.

I hated crying in public, but that didn’t stop the tears from flowing.  I was happy to have been wearing my sunglasses as I passed and said hello to the other parents. When I got to our home, I saw my brother’s car.

“Wow, it’s early, what’s he doing here?”  I thought.

I loved when my brother visited.  He gave me big hugs, he offered support both physically and emotionally to both Kevin and me.  He was a loving uncle to Alina and he was very generous with the little time he possessed.

My brother met me at the door.  “Don’t come in yet,” he said with a grin.

“Why?” I asked. “What’s going on?”

“Everything’s fine, just give me a sec,” he suggested.

The burning bush, the one that Kevin had proudly planted was beginning to turn.  I stood admiring its bursting hues and wondered what was taking place inside the house.

Moments later, my brother joined me out front.

“Ok, just trust me, “he said. Then he covered my eyes with a scarf and took my hand.

I would have then and still would trust him with my life, so holding his hand as I walked blindfolded into my home was easy.

Once inside, he asked me to sit down.

He then took off my shoes and socks.

“Jamie, what are you doing?”  I asked again.

“Don’t worry,” he said in his gentle voice. “You will soon find out.”

I felt the carpet under my toes.

I heard the dishwasher running.

I heard the humming of Kevin’s ventilator.

I heard the door to our patio open and took a guided step.

My foot did not land on a brick patio as expected, but rather, something cool and scratchy. I soon realized that my toes were sinking into sand.

It was a beautiful morning and the sand felt cool and welcoming under my feet.  Still blindfolded, Jamie then guided me to sit down on a towel.

He sat behind me and held me in his arms.

Seagulls screeched in front of me.

Mists of water speckled my face.

“Here you go,” said my brother, handing me a hot latte and biscotti.

We sat there, not needing to say anything.  He embraced me while I sipped my coffee and nibbled my biscotti.

I was in awe.  What a miracle of love! I had never made it to the beach that summer but my brother had brought the beach to me!

It was the nicest thing that anyone had ever done for me.  It was perfect. For fifteen minutes, until Kevin woke and needed care, I was at the beach.

When Kevin woke, my brother gently removed my blindfold.

Now I could see where I really was.

The patio was covered in sand.  A CD player sat on the brick wall, inside were sounds of the ocean. He had supported the hose on a bucket and the water was set to sporadically mist.

With my eyes open, the beach was gone.

But that memory, that sincere gesture of love and hope, kept me basking in happiness for a long time.

I will always be grateful for the day my brother Jamie brought the beach to me aDSC_0038nd to this day, his “beach” was the greatest gift of hope I have ever received.

May an angel, heavenly or EARTHLY, enter your life when you need one most!  Jamie (see picture) is still always there for me when I need an angel!

Never Underestimate the Power of Words

Never underestimate the power of words.  In 1995, my late husband Kevin O’Donnell was diagnosed with ALS after eight months of doctors appointment and painful tests.  He was thirty years old at the time of his diagnosis with so much life still ahead of him.  So much life for us.

The ALS Association – Philadelphia Chapter, asked Kevin, our daughter Alina and I to go to Washington, D.C. to attend a drug hearing for the approval of Rilutek.  We had the opportunity to share our opinion on the drug’s efficacy and purpose.  I wrote the speech quickly and passionately.  There was a lot riding on the approval of Rilutek, the only drug in consideration for ALS patients.

I gave the speech with Kevin and our daughter Alina (both by my side) in 1995 at the Rilutek hearing in Washington, D.C. At the time, there were no drugs approved specifically for ALS.  Rilutek proves to extend life expectancy in patients for three months, but those three months might mean the world to a patient.  Perhaps they allow the attendance of a special wedding, the witness of a new birth, or the celebration of a silver anniversary.  Whatever those three months granted to patients and their families, they were precious.

The use of Rilutek (Riluzole) for ALS patients passed that day, 4 to 3 at the FDA hearing. It just passed, but it PASSED.  Today it is still the only FDA approved drug specifically for ALS. Never underestimate your power to create change.You are your best advocate so be loud and be heard. Be the voice behind change.

And my speech: Sept. 1995

right before diagnosis

There is nothing like the warmth of the morning sun and the sound of my three year old daughter Alina whispering in my ear, “Mommy, I awake!” When she awakes, she is excited about beginning the day.  My husband Kevin and I are excited and grateful for each day that we are granted as well.  We relish the simple pleasures of life, such as the joyous laughter of Alina when we hug and play as a family.  Our world would be just perfect if Kevin wasn’t terminally ill.  As a young family, we are just beginning to grow.  I Jodi O’Donnell am twenty-nine years old and my husband Kevin, thirty years old, lives with ALS.  Unfortunately, the wrath of this ruthless disease may rob him of his most precious years, my daughter of her loving father, and I of my partner and best friend in life.

It has been our goal to remain hopeful and optimistic about our situation; only four months have passed since Kevin’s diagnosis and our lives have already been greatly affected. Kevin now has minor symptoms that cause discomfort: cramping, fasciculations, shortness of breath, fatigue, falling and muscular weakness.  Still, we manage to wake up smiling and appreciative for each moment and have even accept the challenges that confront us.  Regardless, of our positive outlook, though, the presence of ALS is constantly in the back of our minds; keeping us captive of what is to become of us if nothing is done. I cannot fathom what life was like for ALS patients ten, five, even three years ago- without even one approved drug in their corner.

Kevin was diagnosed with ALS on Memorial Day Weekend, 1995 after eight months of doctors and tests.  Soon after, the news of Riluzole and its efficacy was released.  This news has remained the thread that has woven our hope and dreams.  We realize that research takes time, but that time is so precious to my husband and thousands of others with ALS.  Each day that we fail to have access to the proper prescriptions, leaves us one day further along defeated.

Some of you may be familiar with the statistics and facts associated with ALS, but please allow me to remind you- approximately 30,000 people in the U.S. currently live with ALS.  The average life expectancy of an ALS patient is 3-5 years.  As many as 80% of those 30,000 victims will die of ALS within five years.  Mathematically, that means that 24,000 people have very little time to waste; to those of us with ALS, life is far too precious for precision.

Time is of essence here; the accessibility of Riluzole is currently the only answer for many people who are trying desperately to be patient.  As patient as we may be, ALS waits for nothing.  It is relentless; it rapes its victims of their physical capabilities yet leaves the intellect fully conscious to observe the body’s decline.  And sometimes, it does that as rapidly as one year.  I understand it is the FDA’s responsibility to fully test experimental drugs, however, the present system in not working quickly enough.  The clinical drug trials available are wonderful, but leave those who do not quality despondent and without hope.  And who has time for placebos?  We are fragile human beings in need of help.  If a drug for cancer can be approved in six months, then Riluzole should be approved just as quickly.  ALS patients matter equally! Given the alternatives that we have, we’ll accept the risks of experimental drugs, because the benefits outweigh the risks and our bodies are already failing us.  Considering the fact that we are already terminal, what do we have to lose? I implore you, for the benefit of so many genuine people who depend on your compassionate decision making, proceed quickly with the approval and availability of Riluzole.  As it stands now, our lives depend on you and we trust that you will do the right thing.