|Jodi O’Donnell Ames
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 in September 2000. I awoke at 6 a.m., 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 10 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. Afterward, 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 toward 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 and — 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, I was guided by Jamie 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.
|Jamie, the author's brother
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 15 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, and 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!
Posted March 13, 2013 by joames.
About the Author
I have raised three children who learned about ALS as young children. My late husband, Kevin Gerard O'Donnell, heroically battled ALS from 1995 until his death in 2001. He was funny, handsome, loving and brave. Our daughter Alina was almost 3 when Kevin was diagnosed.
In 2003, I married Warren Ames and became the mother of two children, Nora and Adam, who were then 11 and 7. Nora and Adam lost their biological mother to ALS in 2000, when they were 9 and 6.
ALS has united my family in hope and in love. We live each day with hope for tomorrow and want to help other families who, like us, know ALS all too well. Not a day goes by without remembering Kevin and Tina and the lessons they have given us. We formed Hope Loves Company in their memories, as a way to provide emotional and educational support to children of ALS patients.
Tina, a child counselor when she was diagnosed with ALS, wrote the book "What Did You Learn Today?" to help younger children come to grips with the changes brought on by ALS. The book is available on the Hope Loves Company website under "Resources," or on amazon.com.
Follow my ALS blog at joames.wordpress.com/2013/01/03/as-my-als-journey-and-family-expands.
"If it were not for hopes, the heart would break." — Thomas Fuller