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 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!

Since that day of Kevin’s diagnosis in May of 1995, I have been on an ALS (Amyotrophic Lateral Sclerosis) journey.

My journey started as I embraced Kevin while we received the devastating news which was incompressible; I heard every other word.  Neurological.  Terminal.  Live.  Percentage. Hope.

When Kevin lost his battle with ALS in 2001, I lost a huge part of me.  It took me YEARS to accept that he was gone and to understand that having him as my husband for only nine years was better than NEVER having him at all.   He was brave, funny, loving and kind.  I find myself now, after some of that pain has subsided, understanding that I would not have changed my role as wife, caregiver and advocate, even had I known what would ensue, for anything.  It was the greatest role of my life and one for which I am proud.

Today, I live each day in Kevin’s memory – charged with continuing his battle in the fight against ALS and in the hopes of helping new families currently faced with this horrific disease and the enormity of that challenge.

In October 2011, my daughter Alina and I met with the ALS Hope Foundation in Philadelphia to share my non-profit, Hope Loves Company, with them.  HLC was formed to provide emotional and educational support to children of ALS patients.  We had a great meeting which ended in this suggestion: “You should go to the International MND/ALS meeting in Chicago in December, 2012.  Share HLC with others.”

Food for thought. I filed that information mentally.

Since then, with the help of my HLC Board, we have reached out to ALS families all over the United States- offering them our love and support. We have sent free copies of the children’s book, What Did You Learn Today?  to families in Connecticut, Pennsylvania, Texas, Washington, Alabama, Tennessee and more.

To read about how the children’s book WDYLT? as well as Nora, Adam and Warren Ames came to bless my life, go to the HLC website and read about yet another incredible journey. www.hopelovescompany.com

HLC had its first Kid’s Day in June 2012 for ALS children and their families. I was overjoyed to see the positive response from families, volunteers and Waterloo Gardens, all of whom generously embraced the day and HLC.  Waterloo Gardens in Exton, PA even donated their grounds for Kid’s Day!

Over the summer, HLC received its first large donation from Steve and Michel Gleason, of Team Gleason- a generous welcome and congrats that officially tagged us as a non-profit organization with big shoes to fill.  Steve reminds me of Kevin, living bravely with ALS and making an impact every day from his wheelchair; accomplishing much more than most of us who are not challenged by a neurological disease.

In October, I was reminded that the National Alliance meeting in Chicago was just around the corner.  I called in my troops.  My dedicated sister-in-law Keiren updated the website and brochure.  My dear friend Linda helped with contacts and preparations.

My friend Margaret picked out just the right clothes from my wardrobe.

Riverton Health and Fitness Center and their monthly donations to HLC gave me hope for the camp that I was about to reveal to a very large audience.

My incredible intern Emily created my presentation, one that took us a few visits to perfect.

I lived for weeks, at my computer, in my pajamas, with one goal:  share HLC with the ALS community and share it well! There were days when I began my work at 6 am and realized by 3 pm, that I had not had breakfast!

On December 1st, in the midst of Christmas gifts and decoration, I parked my suitcase. My husband Warren loaded our car and drove me to the airport. Best of all, our three amazing children wished me luck and said I would do great.  Wow.

The ALS Hope Foundation generously sponsored my trip to the conference and gave me the opportunity to present HLC.

Without my generous team, I would have been back in New Jersey still working, when my plane left for Chicago.

Alone, with the spirit of my team in my heart, I headed to Chicago, slightly apprehensive yet passionate about sharing HLC with the world.

Day 1- I sat in a room of 80 attendees- a menagerie of patients, caregivers, advocates, scientists, doctors, etc… and felt smaller than my already small stature.

My mind wandered.

Will HLC be embraced?

Will others rally behind my cause?

Will my presentation go smoothly?

Will this experience move me forward in my work as an ALS advocate, for ALS families in any way or in many ways?  I had no sleep the night before, due to these concerns.

As I looked around the conference room, I sat in awe.  Diverse cultures.  Diverse appearances.  Diverse languages.  Conversations were taking place in many languages foreign to me.

How can we unite our efforts when we don’t share a common language?

The first few speakers presented.  Ten powerful minutes each.  Stem cell hope from Israel.  Raising funds suggestions from Australia.  ALS forums and their place in the U.S.

I sat stunned.  Quiet.  Attentive.  I nodded in agreement with everything that was being said. Wanted to shout a huge, “Amen!” but avoided the temptation and the opportunity to embarrass myself.

It quickly became clear to me that we did all share a common language at the International MND/ALS Alliance- ALS. We united in the face of ALS and our determination to help make a difference to patients and their families.

Day 2 – It was my chance to present Hope Loves Company.  My leg was wiggling back and forth.  I began to shiver, yet, I stood and presented HLC and my journey to a room full of reflective strangers.  When the HLC  video ended , I could hear the shuffling of purses, in search of tissues.  As I left the stage, I was greeted by smiles of approval.

For most of my life as an ALS advocate, I have been alone.  Kevin’s picture was the impetus for motivating my work.  Then I met my husband Warren, his children Nora and Adam and placed a picture of their mother, Tina, next to Kevin’s. Over the last eleven years, I have added hundreds of pictures (in my heart) to that line of heroes gone too soon.  But most of my work is done in isolation, just me and the computer and an email address of someone who needs more information, a place to vent, a reason for hope.

Following my presentation, several people came up to me for bear hugs.  One man who spoke no English kissed my hand again and again.  I have never felt less alone in my ALS journey.

The culmination of Day 2 of the conference ended with a Warm and Fuzzy dinner, as it was aptly named ten years ago.

After a chocolate themed dessert, each of us had the chance to stand and say something.  I couldn’t resist.

“This day reminds me of John Heywood’s quote, ‘Nothing is impossible to a willing heart’.”

There, I had learned that in Latvia, Russia people wait six years for wheelchairs.

I had cried with a woman from Taiwan whose young husband lives with ALS.

I had exchanged ideas with a woman from France who helps ALS families.

My willing heart will bring me back to the National MND/ALS Alliance conference next year and I will feel right at home as my ALS journey and family expands. 

According to Urban Dictionary, an old soul is a “spiritual person whom is wise beyond their years: people of strong emotional stability”.  Basically, someone whom has more understanding of the world around them.

While I want to believe that Urban Dictionary has me pegged, I am not everything described, but I do feel as though I am always observing and trying to make sense of the world around me.  Usually, I am trying to make sense of why I don’t fit in.

During the holidays, having an old soul for a parent can be a drag.  I’m hoping that you’re intrigued and are ready to take the old soul Christmas questionnaire, so if you read the characteristic below and find yourself nodding incessantly, you too are guilty my friend. And your children are probably calling you Scrooge.

Old Soul Christmas approach:

You decorate just enough to show you are celebrating the season, but not enough to be the recipient of oos and ahhhs.

You use recycled paper from last year’s holiday and value your resourcefulness more than your ability to dazzle.

You relish the taste of one amazing out of the oven snicker doodle- warm and melting in your mouth with delight.

You only send cards to those you miss, and you WRITE in your card, not simply sign your name.

You take mental notes year long and have gifts in mind by Halloween.

You make your own cards.

You know the real meaning of the season and let that guide your actions.

So, I’ve heard a few complaints and observations over the years:

“I’m not kidding when I say the Smiths have gone all out!  They have more lights on their house then we have on our street!”

Or:

“Can we all go away to St. Michael’s for Christmas like the Robinsons?”

And

“We give the worse gifts ever!  Practical ones!”

Sorry my children, but your mother’s an old soul.  If I had my druthers, I’d be Beth in Little Women and on Christmas Day, I’d feed a family in need and that would be ideal.

From Little Women by Louisa May Alcott-

“Christmas won’t be Christmas without any presents,” grumbled Jo.

“It’s so dreadful to be poor,” sighed Meg.

“Some girls have all the pretty things, while others have nothing,” sniffed Amy.

“But we’ve got Mother and Father and each other,” said Beth from the corner.

So my children, there’s always Valentine’s Day to look forward to!

But my hands are powerful.

As a child, I used them to wrestle the aggressive middle school boys who thought girls were weak.  One grasp of my hands so strong left them speechless and me with the nickname, Meatballs.  My family is Italian so I received the nickname from embarrassed boys who caved in my vice.  I hated the nickname but loved the power it demanded.  Boys lined up to arm wrestle me, determined to beat “Meatballs” this time around.

That same strength gained me the girl’s arm hang record in the 8^th grade.  The challenge was the Presidential Fitness Award and the competitors among us loved the fitness it demanded.  While the boys did pull-ups, the girls had to complete the dreaded arm hang.  Once in a pull-up position, the clock started to tick.  My face flushed, my arms shook but I concentrated on the task at hand.

“Please don’t let go!” I thought, as my hands tired at one minute and 23 seconds when they could no longer resist the pull of gravity and glide of sweat.  They had held all of me, my nickname, my muscles, the meatballs in my belly and my will, as long as they could. I still have that faded certificate in a dusty file somewhere.

Once a teen, I welcomed puberty and the chance to grow.  My friends talked about needing longer jeans and sneakers with wiggle room, about meeting their parents in height, then joyfully surpassing them.  That never happened to me.  My body remained as though it failed to graduate eighth grade. I hated my small body, my small hands and my small life. I wanted to look like everyone else- to feel normal. Being strong wasn’t comparable to being attractive.  It wasn’t glamorous to beat a boy in arm wrestling, hell, it was intimidating! It was not the best approach to finding a date!

The human heart is said to be similar in size of the fisted hand.

But something happened that year and my heart grew bigger than my smallness. Bigger than my fisted hand.

It guided my hands in living and loving. Of giving and letting go. It didn’t matter that I was small in stature, I became instead, big in heart.

I started to volunteer in my community.  My hands were busy helping small children make crafts.  My hands were busy making meals for sick neighbors.  My hands were busy holding on to wobbly grandparents as they entered our home.

I took my love for helping others to heart and studied to be a teacher. My hands guided my pedagogical years too.  Dusty hands held chalk to board.  Germy hands passed gnawed pencils to unprepared students.  Sore hands graded hours of essays every weekend.  Kind hands patted shoulders of children needing encouragement.

Soon after I became a teacher, I met my future husband Kevin.  He was the son of the school’s reading specialist.  He was funny, handsome and strong.  Two years after dating, I became his wife.   Thirteen months later, I became a mother. My hands orchestrated my maternal world.  Diapering, feeding, caressing, they never seemed to tire in their loving care of our daughter Alina.

But the true job of my hands would be one that I had never expected.  One that I was born to fulfill yet never wished gained from experience.

Kevin was thirty years old when he received the diagnosis of Amyotrophic Lateral Sclerosis, ALS  or Lou Gehrig’s Disease.  He was my world and his terminal illness meant that WE were dying.

To understand what his life became under the influence of ALS, imagine this:

Lay in your bed.  Now, you can’t speak.  You can’t move.  You are depended upon a ventilator for every breath.  You can’t eat but are nourished through a feeding tube.  Remain there for minutes.  Does it feel like hours?  Years?

Kevin was in that state for three years.  His paralyzed life alternated from hospital bed to wheelchair. His body had failed him yet his mind was fully capable of witnessing his body’s demise.

As Kevin’s disease took his every ability, reducing him to an infant, our infant was surpassing his skills. She was learning to eat.  She was learning to walk.  She was learning to talk.

And my small hands could only do so much.  They could hold; they could touch.   They could wipe tears, but they could not cure ALS. I felt hopeless- so  small  that I had prayed to simply disappear.

Before Kevin died, all that remained in his control were slight eye and mouth movements.  Eventually, closed eyelids meant no.  Open meant yes.

There came a time to ask the question: “Do you want to go off the ventilator Kevin?”

His closed eyes opened and never swayed.

One day I was sitting next to Kevin on his bed.  I looked into his eyes and began massaging his scalp.  His short hair felt ticklish under my fingertips.  I noticed the lines my fingers made as his hair parted beneath my touch.  I liked the texture, the flow.  My hands moved freely, with ease and fluidity.  They were on a healing mission. I noticed Kevin’s body, soften and sink deeper into the mattress.  His eyes were open, then closed.

Kevin’s body became my canvas.  My small, agile body moved gingerly around my dying husband.  He smiled as much as his atrophied muscled allowed. My strong hands never tired.

I then sat above him, working my fingertips along his neck, gripping his shoulders muscles and feeling them melt under my touch.  The world of ALS melted too.  Kevin was at peace.

There was an internal melody encouraging my movements, my fingers moved with intention, soft and giving. For the first time since Kevin’s diagnosis, I did not think nor worry.  I was lost in this cyclical gift of giving and receiving.  I moved like a dancer, elegant and trained.  All of the love that I wanted so desperately to show Kevin pored through my fingertips.

The day that Kevin went off of his ventilator, I snuggled next to him on his hospital bed like I did when he received his peg tube.  Like I did when he was vented.  Like I did many times, among tubing and technology.

I began massaging his head, gently.

Morphine.

I massaged his fingers. His arms and looked into his eyes. He motioned-sensing he had something to say.

I read his lips, barely moving.

“I just want to see my beautiful wife.”

The ventilator was removed.

I massaged his cheek, then his lips with wet kisses as he fell into an eternal sleep.

Jack, a sweet faced boy of three, with long, blond wisps that fell into his blue eyes, ran, then hopped into my arms in 2005.   I was the mother of three teens then.  My teens knew that I was hopelessly smitten with every baby and toddler who entered my life and ready to share the maternal gifts that they now refused, those of hugging and reading, of snuggling and giggling, of mending invisible boo boos.

My daughter Nora brought Jack into our home and our lives.  Her friend had watched Jack then got a new job and was no longer available.

“Could we watch him?” Nora’s friend had asked.

Everyone knows that I love children.  Everyone knows that I love teaching.  Everyone knows that I still collect children’s books as though I have gaggles of grandchildren.

“Well, of course,” I had said.

Our entire family, the five of us, sat on the porch anticipating Jack’s arrival.  We were told that he didn’t talk.  That he might get frustrated by our lack of communication.  That he had Autism and was on a strict gluten-free diet.  I embraced the chance to learn more about Autism.  To reach a child who may be unreachable at times.  To teach my children about the joys and challenges of being responsible for a tiny human being.  I knew that this experience would be bigger than their previous sitting jobs. I knew that this experience would be life-changing. That God had once again brought someone to us, for us.

At the time that we met Jack, Nora was 14, Alina, 13 and Adam 12.  They were typical teens who thought they had all of the answers. There were times when they didn’t need me or want me anymore.  But they needed me to help them still with many things.  They needed me to help them with Jack.

We had lots of questions.

What if Jack gets frustrated?

What if we don’t understand what Jack needs?

I was very excited about welcoming a new child into our home- about welcoming new chances to learn and grow as a family.

When Jack and his mom arrived, I felt immediately connected.  They joined us on our front porch.   To communicate, Jack only grunted and used sign language back then.  We all watched in wonder.  What is Autism?  Why does is occur?  How will we communicate with Jack? Will he talk one day? Will my maternal skills be effective enough for Jack’s world?

Jack’s mom carried an armful of Jack’s belongings.  Toys.  Diapers.  Clothes.  Gluten- Free food.  She was the ultimate mom with a heart full of gold, devoted fully to Jack’s well-being.  She was a single mom who didn’t miss a beat when it came to covering everything Jack might need.

“This is his Children’s Tylenol. This is his thermometer; here’s how it works.  He drinks a lot of water.  Here is his Sippy cup.  Here is my number.  Kisses Jack.  Mommy loves you. Bye. This is his blanket. Ok.  I gotta go.  I’m gonna be late for work. Oh and this is his favorite book.”

As a mother, I knew what Jack’s mom was feeling.  She hated to leave her baby.  She was unsure if the night would go smoothly.  She wanted to know everything that happened and all that she missed.  She wanted to trust us fully and hoped she could.

She barely left in time for her second job of the week.  In order to make ends meet, she was waitressing on weekends in addition to her full time job. Her commitment and compassion as a mother spoke louder than her exhaustion. Only a few years older than she was, I was exhausted just watching her.  My children are becoming independent, I had thought.  My life will get easier.  Will there be a time when Jack will become independent?

I wasn’t sure how we would break the ice- how we would let Jack know that we welcomed him into our home.  Then I thought of bubbles. There are no words needed for bubbles.  Bubbles are a universal sign of joy which span across cultures and ages.  I remember once when I was nannying and I played bubbles with a baby while sitting in a community park.  A Chinese family joined us.  They spoke no English but their laughs were no different than ours.  They too tried to follow and pop the bubbles.  It was a touching moment between two different, yet similar worlds.

Jack and I sat on the porch for one hour, blowing bubbles.  We blew them into the wind.  We blew them into the bushes.  We blew them and then returned them onto the wand and watched how long they remained before popping.  Jack giggled wildly with each popping bubble.

My teens, at first apprehensive, joined in the fun and forgot for the moment, that they were losing their childhoods and leaning towards adulthood.  It was a chance to fall in love again with my teens. It was a chance to fall in love with Jack.

When Jack entered our home that day, his little hand touched the walls around him, he walked and caressed the wall, the counter, the table.  This ritual seemed to comfort him.  I followed behind him and did the same thing.  He smiled.

When Jack came again, he had a talker- a small digital box with pictures of people, places and things.  It had pictures of people displaying feelings too and when Jack wanted to communicate, he pressed the picture and a voice spoke, revealing the word.

Within weeks, Jack was an integral part of our family.  We each took turns spending time with him.  We knew every aspect of his visit and the rituals that he found comforting.  His blanket.  His books.  His talker.  His trains.  His cars.

When we tried to change the routine, Jack eventually said, “No.”

Later it expanded to: “Not too sure.”

In honor of Jack, we have instated “Not to sure” into our family conversations.  Jack says not too sure to be polite, when he really prefers not doing something.

“Time for a bath Jack, are you ready?”

“Not too sure.”

So if my daughters ask, “Mom, want to go to the mall today?”

“Not too sure,” is my polite answer! They know that the mall is the last place I want to go.

Six years have passed since we first met Jack and he is loved more than ever.  Nora and Alina are now adults in college, but when they are home and if they are available, they watch Jack.  My son Adam is now  6’1”.  He is eighteen and not always verbal, a mumbler when it comes to communicating with his parents.  But in Jack’s company, he’s loving and boyish.  Setting up racetracks and video games.  Offering piggy back rides and grappling in our back yard.

And in those six years, Jack has grown leaps and bounds.  He is tall and nearly half my weight.  He reads and works an IPAD like a fifteen year old. He is a kind and loving young boy.

Last week when we had Jack, I just so happened to have six books from the library.  “Let’s read Jack!”

He wanted to lay in my bed, with me and my children, all snuggled together.  We each took turns reading to Jack and he laughed and hid under the covers.

I smiled at the joy that he brings me.  The joy he brings us.  I wondered how long it will take him until he no longer wants to snuggle and read with me.  Will he be different as a teen because of Autism?  Then I rubbed his back and asked him about his day.  When he finished the details of his day, he started getting cozy and in position.  Head to the side, arms sprawled out and I knew he was fading.  Then he whispered into the room, “I love you Jodi,” before falling asleep. Priceless.

I still don’t know the whys or hows of Autism, but I do know the following for sure:

That children with Autism are special.

That children with Autism are gifts from God and are perfect as He created them.

That children with Autism should have the same rights as all children.

That children with Autism can be great teachers if we pay attention.

That all children, especially those with special needs, need compassionate advocates like Jack’s mom.

To learn more about Autism, go to www.autismspeaks.org

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 stance 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 how 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, rethought, 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 wonderful 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 peo0ple 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.

Alina, Nora and Adam

Once again, I am astounded by the early interruption of fall and its beautiful foliage with the premature invasion of holiday commercials.  I blogged last year about the fact that Halloween costumes and Christmas ornaments would be vying for space on shelves this year- and they were.  Went to Target and saw one display that had Halloween candy (as it was being moved) and Christmas ornaments (as they were being added) end to end. Read my Christmas Schmismas blog from last year (http://www.shewrites.com/profiles/blog/list?user=0sz9tj78vo297S

And while my children don’t always agree with my perspective of the holidays, I am standing firm once again to keep true to myself and what it all means to me.

The holidays are a time to remember the love that fills my life- God’s love and the love of my family and friends and sharing that love and my blessings.

It’s a time to investigate new ways to use my blessings to help others.

It’s a time to remember that I can give gifts from the heart, some handmade and some purchased, with meaning and gratitude.

It’s a reminder that there is much suffering in the world, and that I must always do my best to help those in need.

Choose to be present…

My friend Sara and I were talking about the holidays and the fact that most people barely get through them unscathed- that all of our “obligations” make the holidays a time of errands and deadlines.  That some shoppers run around disgruntled and tired and frustrated and hardly have time to reflect on the season’s true meaning.

We came to the conclusion that the best gift of the season should be the gift of learning to be present and I welcome and challenge you to join us!

Before we can learn to be present this holiday season, we’ll need to start by creating lists. No, not another shopping list, but a list of holiday traditions and events.  First make a list of the things which bring joy this time of year.  Call this list “Joys”.

Then create a list of obligations that occur this time of year.  Review this list carefully and consider what can be removed.  Call this list “Obligations”.  Obligations are things that might be important to the people we love, but may not be meaningful to us. What is important to us is that we show the people we love that if this event holds value to them, we can honor their wishes.

So, dressing like an elf and taking a picture with your mom may not be on the top of your Joy list, but it may bring you joy, if it brings your mom joy.

Look carefully over the list of obligations. Is there anything that can be removed this year? Is there an alternative suggestion for an obligation that you simply prefer to avoid?

Example 1: Obligation- Sending holiday cards

The kids want to send out holidays cards.  Postage is expensive.  You aren’t sure why you send cards to people you are close to and see over the holidays.  Can holiday cards be made as a family project?  Perhaps make and send cards to friends and family members who haven’t been seen all year? Take the time to sends cards to those you miss and include a picture as well.

Evaluate each obligation with these questions:

Is this event really important to me for the holidays? 

Is this really important to those I love for the holidays?

Focus on a few family traditions and enjoy them. Do less and appreciate more.

Once a commitment has been made to an obligation, be present and grateful. Focus. Listen.  Breathe.  Participate.  Be gentle with yourself and know that it isn’t always easy to be present and that we will fail again and again.

Practice being present…

Learning to be PRESENT is not easy.  It means that the past is behind us and out of control.  It means that the future and the worries that come with it, is also out of our control.  NOW is all that is certain and should be celebrated.

You will still think about the past and the future, but when you do, try to center again, take a deep breath, and put things into perspective.

If we spend too much time worry about the past or the future, we miss the present and the blessings of that particular time.

So, for the gift of being PRESENT, try the tips below.

Do one thing at a time!

We are trained to multi task and some of us do it very well, but during the holiday season, do one thing at a time and celebrate that moment.  Turn off all electronic devices (cell phones, computers, video games, tv ) and return to the simplicity of life before such luxuries (and invasions) occupied your time.

If it’s making cookies that have meaning to you, do this while avoiding the modern day invasions and connect to those you love. If it’s cutting down your own Christmas tree, make it a family event and allow each person to have an important role in that tradition.

Delight in simplicity!

Gifts don’t need to be expensive or wrapped; they can be from the heart and equally beautiful.  Find a craft that’s appealing and fun and spend time with your family creating gifts.  Children, especially, will love this idea.

One of my favorite gifts is an ornament my husband made for me.  Every year I ask for peace on Earth for my birthday and Christmas gifts (I was born on Christmas!). A few years ago, that’s exactly what my husband gave me:  Peas on Earth.  He took a clear round ornament and painted the Earth on it, then glued peas all over it!  Clever and special and a keepsake! Priceless.

We aren’t all crafty.  There are many other ways to give homemade gifts.

Making breads or cookies is another way to spend quality time with your family while making holiday gifts.  And there is no long line necessary to make your purchase!

Donations in honor of or in memory of loved ones is another way to express gratitude and appreciation.  Making a donation is a great way to give a gift while allowing others to give as well.

Nothing is less complex or expensive than volunteering your time.  Many soup kitchens need additional help when the weather gets cold.  Stores and organizations typically collect gifts for those in need.  Involve children in this giving by having them help pick out the gift and contribute some of their piggy bank money to the cause. Children should learn that gifts are much more than wrapped toys and that giving can feel much better than receiving.

It may be the first time your child goes to Toys R Us and returns with a gift for someone else!

Bring yourself back!

It’s impossible (unless you are the Dalai Lama) to be present all of the time. You will get bent out of shape, discouraged and anxious plenty of times. Find a quote that helps to bring you back to a place of peacefulness when tough times arise.    You can also use a healing stone or a serene picture as a guiding tool if needed. If you have the time and place, sit quietly with your eyes shut to regroup and replenish.

Stop and take deep breaths before you speak or do (count to 10)! 

The holidays can be noisy, busy and chaotic.  It’s easy to get impatient.  Stop and take a deep breath and exhale the stress before responding to anything which causes anxiety. The ten second rule with avoid causing a scene when that fifth shopper butts in line!

Read and learn from our great teachers.

Late professor and psychologist, Abraham Maslow said, “The ability to be in the present moment is a major component of mental wellness.”

This is much easier said than done, but with good intention and practice, we can celebrate the holidays with more love and joy than commitments and stress.

There are a number of great books about living in the present:

Power of Now, What About Now?, The Book of Awakening, Mindful Moments

Buy and read them.

Eckhart Tolle (author of The Power of Now, and A New Earth) talks about being present in his books.

“…the foundation for greatness is honoring the small things of the present moment instead of pursuing the idea of greatness.” p 266, A New Earth © 2005 “…the foundation for greatness is honoring the small things of the present moment instead of pursuing the idea of greatness.” p 266, A New Earth © 2005

Cherish the small things that can bring great joy (a child’s delight in the box that big toy came in, hot chocolate with marshmallows, the hug from Grammy when she receives your famous banana bread) and flow with that joy as long as possible. 

Go to the River!

I like to concentrate on the river metaphor when I am stressed over my holiday obligations.  Think of a river- it is only made up of water and yet, it is made up of layers, just as we are.

On the surface of the river there is turbulence, but below that turbulence, the water is still.

Being present means to reside in the stillness of the water, the stillness in you. Regardless of the turbulence of life around you, practice being still and calm among the turbulent waters.

No matter what the season, acknowledging life’s blessings and celebrating them with gratitude is an important step towards living in the present.

Life is not measured by the number of breaths we take, but by the moments that take our breath away.” Anon

Jodi, Warren and Abbe

My husband’s blog!!!!  Part 1

Preface:

My husband Warren Benton Ames decided that we could have a great road trip.  His sister Abbe was moving from Colorado to Maryland, and needed a car driven back.  He loves to drive and I love to travel, so….I  was (improperly) informed that we would be filling one of Abbe’s six sports cars (oh, my poor husband!) with valuables and would have just enough room for ourselves and some camping supplies. I envisioned pottery, classware and jewelry boxes.  No. Turns out, as Abbe is a very high-ranking Army Doctor, she possesses a lot of high-ranking Army valuables.

Therefore, we drove a neon yellow BMW sportscar from Colorado to Maryland- filled with legal and licensed weapons.

The vegetarian, peace activist, serenity now woman that I am was not happy with this miscommunication! “It’s in the details hon!”

Part 1 – Our Time in Colorado

Part 2 will cover the travelling (not light) adventure with valuables.

Enjoy!

Jodi and Warren’s
Excellent Adventure

-or, “Are We Somewhere Yet”

Saturday – (D)epart Day. 05:30 am. And that is depart time, as  well. Trouble is, we’re still in bed. As we are both ‘worriers’ neither of us  has slept more than about twenty minutes all night. Pure speculation on whether  we slept through the 05:00 alarm or whether it never actually went off, but it  doesn’t matter. Out train leaves the station in forty minutes, and it’s a  twenty minute drive to the station. (Slacker) Jodi can’t get herself together  enough to prepare the Eggs Benedict and Cappuccino I would have normally  expected, but no matter. Tumble Alina out of bed, pitch the luggage into the  diesel Benz, and we’re officially clattering and belching exhaust smoke toward  wherever it is we’re going. West, Old Man. Colorado. We arrive at the train  station with time to spare (78 hp from a three litre diesel isn’t much, but  it’s the TORQUE that got us there on time!) VISA card buys us one-way tickets  to Newark airport (as well as a one-way ticket to Secaucus, NJ – somehow. But  remember, I’m running on twenty minutes or so of sleep.) Uneventful train ride to Newark,  nifty monorail to the airport. Delta flight ETD 08:20, and we’re at the ticket
counter seventy minutes before scheduled departure. Or, as it turns out, just  short of four hours before departure. Pilots and crew were late getting in, and  federal regulations specify ‘x’ hours of rest before they can take off again.

Bored and tired! Fantasizing about the snuggly bed we abandoned not too long ago, Jodi and I make ourselves as comfortable as possible in the  torture devices the airport calls ‘seats’. 07:50 and I’m thinking the five or  six people sitting at the bar might just have the right idea.

Short flight to stop-over in Detroit is uneventful, and we  have an hour or so to stretch our legs in the airport and see black-and-white  photos of the Motor City in its heyday. We telephone my sister Abbe to let her know we’re way behind schedule and won’t
arrive in Denver for another three hours. Or, actually, we telephone somebody  whose phone number is one digit away from Abbe’s number. Slight typographical  error – I eventually figured it out. There may still be some poor schmuck  sitting at Denver International Airport waiting for us to rendezvous with them,  but we don’t know them and they don’t know us so it’s all OK.

Somehow, though,  Jodi has upgraded our flight from Detroit to Denver to first class!  Clearly, she didn’t mention the name ‘Ames’ in the negotiations. So we  watched  “Win, Win” which is a movie  featuring a high school kid who dropped out the high school I drive by every  day, and ‘our’ flight attendant provided Jack Daniels and ice in place of the  Eggs Benedict I so rightly deserved earlier in the day. Either way, my liver will  wind up harder than woodpecker lips.

Denver International proves to be quite a disappointment, to me  anyway. I had heard (“Discovery Channel” I think) that this was a very difficult  airport to fly into, as it sits in a bowl with tricky crosswinds and  downdrafts. Fool plane just glides down and eases onto the tarmac. Where’s the  excitement in that!? I’d squawk about a refund, but  Jodi informs me that  not only did we fly first cabin, we did already indeed get a couple hundred  dollars discounted from our next Delta flight. Shoot, between that and  the ‘free’ JD it’s probably cheaper for me to be on vacation than it is to be back at home. And right about now, if Abbe completely forgets to retrieve us at  the airport, I don’t much care.

Because I have a plan: Once in Denver, we’ll just take a  shuttle into The City and see a few sights I’ve picked out. Plenty to do, and
we’ll just drift along according to Abbe’s ETA. Just one problem. I don’t spend  an awful lot of time in airports, so the fact that every major airport in the  world is built in The Middle of Nowhere just didn’t register. “Denver” airport  is in “Denver”, which is a big city, right?

Abbe arrives  to collect us from baggage claim. One smoking AMG burnout (or two), and a five  dollar parking fee later we are breathing mile high air, hurtling up the interstate  at Mercedes Benz speeds (and opulence) that would embarrass the Boeing 767 we  left behind. Having optioned for soda crackers and organic water on the plane,  the warning light for Jodi’s energy level goes from yellow to red on the way to  Fort Collins so the Benz rolls to a stop at “Austin’s Grill” and we all top off  our tanks. Buffalo Meatloaf for me (was OK, but Mom’s venison version is much  better) and, I forget, more soda crackers and water for the girls. On the way  back to Abbe’s house, through and enjoyed the comforts of her home.  She shared the relics collected from her travels worldwide.  Everything sacred, everything with a memory. End of day one, safely horizontal on a comfy  bed at Abbe’s house, exact hour of the night uncertain (even without  considering the time zone thing) – coyotes are howling us to sleep. This is  already great vacation!

Sunday – Day two. The itinerary I’ve planned for the week is  somewhat complex: Wake up. Decide where we want to go, what we want to see. Drive there. Jodi isn’t comfortable unless every eventuality is planned for and  mitigated, which is how she plans our vacations. So I’ve somehow sold her on  this free-spirited (read: low effort on my part) vacation plan, and now it’s  Show Time. The next plan was Estes Park, which I remembered my dad talking  about and looked good on Google. That’s it; The Plan. Right about now I’m  wishing I’d packed Rosary Beads. Abbe volunteered to guide the tour, so we  packed ten or twelve boxes of MRE (combat rations, to us civilians) into her  X5  and headed out. Left turn, right, left, left, left, right turn out of the  neighborhood.

I am  SO glad Abbe is driving! Even here on the flatlands there is too much to see –  rust-free ’58 Corvette in that driveway, 12-window micro bus in the Rite-Aid  parking lot. Here we are, and my  check book is 1200 miles away. Like the $376 I have left in there would buy  anything more than a set of hubcaps. RUST FREE hubcaps, though! We drive past a  small dirt lane with a hand-painted “Used Auto Parts” sign out front and it  takes everything I’ve got to resist venturing in. This is not just YOUR  vacation, Slick. At the foothills outside Estes Park Abbe points out the  Stanley Hotel, where the Jack Nicholson movie “The Shining” was filmed. Way  cool! We gotta see this. $5 to park the car and hoof it around, and it doesn’t look like there’s  any shortage of  tourists. It undoubtedly looked better in the movie and  I already saw that. Maybe more than once. Bootleg turn back the way we drove in,
and venture up into The Rockies.

Estes Park is, well, just like the pictures only better. Exponentially  better. We take Trail Ridge Road which follows a decent-sized creek part way up  the mountain. I suspect it’s very picturesque most of the time, but heavy rains now have it looking like if you just stuck your toes in the roiling water your  next stop would be the Pacific Ocean. Part of The Plan had been to do a  whitewater rafting (day) trip while in Colorado, but I’m thinking maybe a  rattlesnake roundup would be safer and less risky. Abbe gets the $.25 cents for  the day, being first to spot elk. Eventually, a whole lot of elk, including  some calves and one nice bull. We rolled the windows down for a photo opp (a  long line of like-minded tourists had brought all vehicles to a standstill) and  we could hear elk cows ‘whistling’ to each other! No doubt they were making  rude comments about these idiot tourists, as well they should; ‘elk watching’  out the window of a BMW seems a bit lame in retrospect. Through Iceberg Pass,  Lava Cliffs, up to where the road snakes through six-foot walls of snow; temperature  was in the nineties when we began our ascent. We stop at Gore Range (elevation  12183 ft.) to play in the SNOW! a bit, but scramble back to the BMW when the  cold rain and hail start. Looking down the valley, with the Poudre River and  Continental Divide (far) below, nasty black clouds are tearing away at the  sides of mountains that look more than durable enough to shrug it off.  Just imagining how life here must have been
for the ‘mountain men’ who lived here is tremendously humbling. I was thinking  we were pretty brave to sprint through the hail in the parking lot at Alpine Pass to buy post cards and coffee. With hazelnut-flavored cream, just like the mountain men.

For dinner that night we meet Jodi’s friend April and her  two kids in Old Town Fort Collins. Jodi and April had their own adventure driving out here together (in a fire engine red RX-7- July and no a/c!) back when gasoline was $1.25 for a  gallon. Dinner was great, the company outstanding (April’s son Caleb had brought along  a copy of “Calvin and Hobbes” so I at least was able to converse with someone  at my own intelligence level) and plenty of people watching in a college town  aptly nicknamed “Fort Fun.” And, just for fun, on the way home we made an  emergency stop at a pharmacy as Jodi’s dinner had included some kind of cheese  she turns out to be allergic to which put her in mild respiratory distress.
Monday – Day Three. Pike’s Peak or Bust! Second most visited  mountain in the world, likely because it is the ONLY one with a road to the  top. “Monster” Tajima became the first person to make it to the top in less  than ten minutes the week before we arrived, which was an enormous relief for  me as it took the pressure off me to do it. His 910 hp / 150 mph Suzuki wasn’t
available today, so we took Abbe’s son Talon’s C43 Benz. Eight cylinders and we used ‘em  all. We got just past the dam over the reservoir at the bottom of the mountain  and the rain started. Not a problem until the Traction Control light on the
dashboard started flashing. And the balls of hail started pounding the car. We’re driving on icy marbles in the pride-and-joy car of a guy who has more  guns than I do pairs of socks! You think “Monster” had pressure here at 150 mph?  Fearing for the Benz’s sheet metal and glass (and hence my life) we do an  about-face and park along the reservoir where it’s only raining. I weigh our
options, thinking we may never get this chance again and we’ll be safely back  in Jersey before Talon sees the hail damage to his car. Up we go, all the way  to Glen Cove before we are OFFICIALLY turned back due to severe weather. One hour drive uphill to see  “Road Closed” sign due to inclement weather.

Temperature is 41 degrees with  a stiff wind blowing, so Jodi and I hole-up in what must be the tackiest (but
warm) gift shop in America at  (the almost top of) Pike’s Peak.  For an hour we get updates on the weather at the top, the plows trying to keep the road clear enough for traffic, and  commiserate with the (few) other foolhardy souls waiting for a chance to perish far, far, from home. Outside, the ranger is using an infrared detector to check the temperature of brake rotors on cars coming down the mountain and detaining  the ones that are overheated. I debate asking him how severe the penalty would
be if ‘somebody’ just drove past the roadblock and on up the mountain. Eventually the weather report calls for no  break in the storm, so all the cars are chased off the mountain. All but one, as  I discover when I stop back at the toll gate for a rain check. One car remained at the summit having been struck completely dead by lightening! I talked to the  driver, who said the lightening came through the open passenger side window,  gave him and his wife next to him a severe jolt, and rendered the car a  complete write-off! And I turned around just because of hail?! Disappointed  though we are, there is a bright side: I have a plan. The Plan in fact, which dictates: ‘Let’s Do Something.’

We passed  the Air Force Academy on our way in, which I was sure would have some cool airplanes on display. We like cool
airplanes, don’t we honey? OK then, there was a sign back there for Wind Cave  National Park. Yeah, there’s that claustrophobia thing isn’t there honey. OK,  Garden of the Gods it is! Right off the main highway, and no admission fee.
Just like I planned.

We glide the Benz past a handful of house-sized boulders which are anchored to the ground by nothing more than substantial than a Dairy Queen sugar cone.

Kids are swarming all over the rocks,  parents are dutifully recording it on video, and I wonder if we are the only  ones who actually saw the “Climbing on Rock Formations Forbidden by Law” sign.

We take a quick snapshot and venture further into the park, where there are now  apartment building-size rock formations in shapes only Nature could conceive. We stumble past the “Beware of  Rattlesnakes” signs – lots of them – and are fascinated with what we see.  There are also nice brick  walkways around the park for those with a fear of heights and /or rattlesnakes.
I’m pleased to report that you can tour the park quite nicely from these  walkways. Just like apartment buildings the formations come in all shapes and  made from all manner of material. Solidified lava fields giving way to  chalky-white limestone monoliths, shoulder to shoulder. Didn’t they have zoning  laws three hunderd million years ago? We explore until out legs can’t explore  no mo’ and the Benz glides us back to Fort Collins.

Fall is not my favorite season because it marks several things that are difficult for me. It begins the wait of an impending doom- Winter, and the bad weather to come. I am not a snow bunny and I’d much rather sweat than freeze. I hibernate in weather below 40- and walk around like the abominable snowwoman- barely seen with so many layers to keep warm that it’s assumed I am a bear, fat for the winter.

My late husband Kevin’s birthday is Oct. 20th, and so begins all of the birthdays, holidays and sad days without him until the anniversary of his passing on February 21. My birthday is on Christmas day. I’ve never minded having a Christmas birthday- except that the more Christmas gets out of control (see my blog Christmas Schmismis- (http://open.salon.com/blog/joames) the less I pay attention to that date, commercially, anyway.

But this fall, I had the chance to catch a documentary, WAKE UP as it aired on OWN on October 16th. This description is found on WAKE UP’s website:

WAKE UP (www.wakeupthefilm.com) tells the true story of Jonas Elrod, an average guy who one day suddenly began seeing and hearing angels, demons, auras and ghosts all around him. Perplexed by his new ability to experience the supernatural, he sets out on a soul-seeking journey to find answers to his mystifying situation. From physicians, religious teachers, scientists to mystics, spiritual healers and more, he humbly inquires “Why me?” He also fears being ostracized by his own God –fearing, southern Christian family, while failing to see the “gift” of his new found ability, that even his hometown preacher affirms could quite possibly be “God’s way of communicating with him.”

I don’t watch much television, but I was fascinated. I sat, fixated on the screen and the idea that some of us, when we least expect it, wake up to new experiences. Experiences which may seem foreign and uncertain one minute can bring us to greater understandings and teachings the next.

I watched every aspect of Jonas Elrod’s experience. He sees an acupuncturist. He prays in sweat lodges, he meditates and spends days in isolation, all to seek answers to why he sees and hears the things he does. He questions the reason for this new gift…. new curse of being open to spirits and visions.

Jonas’ journey is fascinating and inspiring. He tells it with such honesty and sincerity that you can’t help but be intrigued.

As I watched, my life analogy stirred and a piece of writing that I did a few years ago came to mind.

Here it is:

Have Faith; Your Life’s Plan Will Be Revealed

I first experienced God’s presence in my life in 1973 when I received the body of Christ. I was a skinny eight year old with hair that refused order and preferred hanging in unkempt strands. My First Communion dress was delicately and lovingly made by my proud mother; it was simple yet pretty, but lacked the sequence and glamour that surrounded me. I was not a sequence and glamour girl. I would have preferred to arm wrestle, dress and all, “those” girls or better yet, their older brothers!

Although petite, I somehow felt taller than my CCD peers. Father had told his Catechists that we might feel a light enter us and maybe feel different somehow after receiving Christ for the first time. I was only a child but my life changed forever that day. God’s light did enter my soul as Father said. Both His energy and will ran through my seventy-five pound body and nourished my soul as imperatively as the blood that nourished my being. I remember singing our closing songs in church with renewed strength and belief that I had possessed the abilities and energy to be or do “all things through him.”

I cannot explain how or why this happened. The feeling simply embraced me fully while I was singing and I have been God’s faithful servant, to the best of my ability, since that day.

So there, in St. Peter’s church, sitting in a pew between my mother and father, filled with God’s love, I felt empowered. In my child’s mind, this meant “famous.” I was certain that this vision included a glamorous role as a celebrity dancer, actress or possibly, writer and I vowed then to never settle for anything less.

God had entered my body and shared his light with me and this “little light of mine was gonna shine,” somehow.

I remember telling my family (and anyone who would stop to listen) at my communion party that I was now truly blessed. Few understood my excitement, hugging me with a check in hand- thinking that was the impetus for my epiphany. Others stared blankly as though, this weird kid before them, had finally lost it. With a milk mustache and remnants of roast beef between his two front teeth, my uncle muttered his support, “Good for you.” Whether they believed or not, that blessing and that day guided me into my forties and still remains the core of who I am to this day.

My Journey to Fame Begins- NOT!

My mother was a dancer before I knew her well. Before she raised five children and worked as a waitress and spent her days cleaning, cooking and wiping noses, she was most at home on the dance floor. She made ballroom dancing look easy to romantic spectators with two left feet.

When I was nine I began my trek to become a famous dancer. I would put on my mom’s fancy gowns, her high heeled sparkling stilettos and do the foxtrot like the glamorous women of professional ballroom dancing that my mother and I admired. For many years I diligently took dance classes. But in my college ballet class, I came to the difficult realization that my legs are far too short to dance gracefully.  There was nothing long or lean or elegant about me.

Soon after this disappointing epiphany, I decided to focus on my goal to be an actress. I got my head shots done as recommended. I crammed in acting classes, considered a nose job and went for open calls. A few agencies seemed interested. I learned to work my facial features that can be considered any nationality and practiced my best “Joisey” accent. But the jobs for me were few and paid fewer more dollars that I paid out to get them. Next plan for me.

Life Happens

Meanwhile, I became a teacher, married my soul mate and soon learned that I was going to be a mommy. As a new mommy with late hours, I began writing, hoping to be published one day. This was my last shot at doing something meaningful- something for which to be proud.

But the only published work I saw was at school. It was my job as a teacher of Language Arts to teach writing. For every assignment I gave my students, I got busy writing. They enjoyed my writing and in between grading papers and disciplining ruffians, I got to write too. We even worked together to create a school newspaper. This was all fun, but it paled in comparison to being sold at Borders!

And then it happened, I gave up trying to be someone and decided to be someone’s wonderful wife, mommy, daughter, etc… My dreams would wait.

Praying for the Best, Preparing for the Worst

But remember, God had a plan for me and he made those plans known in 1995. Soon after our daughter Alina had turned two years old, my husband Kevin was diagnosed with Lou Gehrig’s Disease, also known as ALS (Amyotrophic Lateral Sclerosis). ALS is a neurological terminal illness that moves very quickly, leaving patients paralyzed and unable to speak. This news changed our lives forever.

God’s light was still strong and He empowered us to handle more than I ever thought possible. Still I pleaded with Him to give us a miracle. I prayed and asked for strength. I begged that my young husband would not die. But the miracle I requested was not granted.

Instead of living my dreams, I watched them die with my husband Kevin. He went from a strong athletic hero of 184 pounds to a paralyzed, ventilated, speechless hero of another kind- MINE. He, though, inspired me to live my dreams. HE, through God’s glory, was my miracle and my plan.

When Kevin lay in bed, unable to move, unable to speak, I danced for him to make him smile. I wore a fancy cocktail dress, put a rose in my teeth and performed my best way OFF-Broadway solo rendition of Chicago. I was his talentless entertainment.

When Kevin spoke of hope for the future, of goals and dreams, of having more children and more time, I was an actress. I made us believe that ALS would not cut his young life of thirty years short. That all of the things we planned to have together would still be. I lived each of his days in total presence- focusing only on his comfort and joy and making them the best.

Kevin died on February, 21, 2001. At his funeral, in front of more than six hundred people, I became a published writer. At Kevin’s request, I wrote with pride both his obituary and eulogy. God’s light kept me strong as I began my tribute. My husband Kevin asked me to write and give his eulogy. He told me that he wanted to see my beautiful face once again, making him proud. Even in his death, Kevin was still charming.

I did not cry. It was my last opportunity to honor the man that I loved; my last chance to make him proud. He, I hope, was.

All along, while I was busy making plans, they were already set. God had bigger plans for me then those which granted fortune or fame. And although I continue to have dreams and have not used my talents to make money, I used them daily to make a difference.

My role as a caregiver was my greatest achievement and I would not have settled for anything less.

As I reflect on my life and where I am this Fall, I am grateful to Jonas Elrod for his courage to produce Wake Up. I know that it will not change everyone, as we must find the reason to want to change and to make a difference. But for me, it’s another affirmation that I like who I am and where I am. And in a world that is uncertain, it’s nice to feel certain about something.

Please check out Jonas’ work at http://wakeupthefilm.com/.

http://www.youtube.com/user/wakeupthefilm?feature=mhum

 A shawl graced my sister’s shoulder and enveloped her baby closer; they were one body still, a circle of love, nearly one month after delivery.  I did not say a word.  Kate gingerly touched her baby’s face and hands.  She smoothed the bundling and closed her eyes too. The baby was suckling and content.  I drifted back to sleep knowing within hours, I would be a part of that love.

 From then on, I wanted three children.  By age ten, I would tell my mother the possible names for my children. Madison, Taylor, Justin,  Alexander? Being too young to be a mother, I did the next best thing- babysat.  By the time I was in high school, I spent more time with children than peers.  At college in the 80s, I was a nanny for hire.  Nannies were the newest additions
to families in need of helping hands. The job was perfect while I was training to be a teacher.  Read great books.  Hold little hands.  Feed curious minds.  It confirmed my desire to have my own children and gave me the chance to apply my skills.  Little did I know then that I would have three children one day, but the births of two of those children wouldn’t involve any labor pains for me.  There would be much greater pains at stake.

 By the time my husband Kevin and I were expecting our first child, I was 26, and had the rhythm of motherhood down.   I
would lie in the tub, belly afloat, book prompted open to the warn pages of Eric Carle or Maurice Sendak.  My novice husband
found this early literary intervention, humorous.  I enjoyed making my baths a daily ritual, loud and encompassing in our small home- giving him little escape and reason to tease.  “She’s gonna say book before mom and dad,” he’d joke.  But the books
bounced with affirmative kicks-she liked her mommy’s animation.

When Alina was born, we were elated.  I held all 8 pounds and three ounces of her on my belly and took a good look. She was absolutely perfect. Since she rarely slept, we had quality play time. She was cute, curious and clever.   We were blessed with a miracle and found her ability to dominate any activity and every part of our home, funny.  How could something so small take
up so much time and space?

The summer that Alina turned one, something strange happened. Our family took a bike ride on a warm June
day.  Alina was happy in her baby seat, on the back of Kevin’s bike.  We were turning a corner and suddenly, there was crying.  Kevin, then thirty years old, had lost control of the bike and he and Alina went crashing to the ground.

Later, when we were home, I nursed Alina to sleep.  She was calm and peaceful; I was a wreck.  It was then that I knew that I would never nurse another child. She was going to be an only child.  It was a mother’s intuition. Kevin was sore, but more than his injured elbow and knee, was his dignity, “What happened?  Why did I fall?  It was impossible for me to keep the bike
up.  Something is seriously wrong. I hurt our baby and I feel awful.”

We made a doctor’s appointment right away.  Our family doctor then sent us to  a sports medicine doctor.  The look on his face was disconcerting.  “I’m not sure, said the doctor after several tests, “but you might want to see a neurologist.”

Eight exhausting months later, Kevin received a diagnosis: Amyotrophic Lateral Sclerosis- better known as Lou Gehrig’s disease. ALS is a neuromuscular disease – which means, it damages the cells that control muscle movement.  Muscles are needed in every human function.  Walking, talking, digesting, breathing. ALS causes these muscles to weaken, making simple tasks, impossible.  And it’s terminal.

Sniffles and silence accompanied us home.  I held on to the words of one of the nurses.  “You are your own percentage,” she had said to Kevin, with a hug. “You can beat the odds.”  These few simple words became our mantra for six years before Kevin lost his battle with ALS.

I lost my composure that evening when I held Alina.  She would be progressing, learning to talk, run and potty, Kevin would be regressing into total dependence- unable to do the simple tasks she was mastering.

Kevin’s battle with ALS ended in 2001.  Alina was eight years old.  I was 35. My hopes and dreams were placed with my husband in his coffin.

In 2002, my mother sent an article from the Pocono Record.  It described how Tina Singer Ames wrote a book, What Did You Learn Today?  for her children Nora and Adam, and her husband, Warren.  It was beautifully crafted in hopes of helping her children, as well as other children, understand ALS.  It was also a gift from Tina to her family to cherish for the rest of their lives.  Tina was  diagnosed with ALS in July of 2000 and died in December six months later.

People talk about falling in love, a lot.  Usually stories focus around couples and how they meet. Falling in love can happen with children too and it did when I met Nora and Adam.  I was working as Director of Communications for the ALS Hope Foundation in Philadelphia.  I had arranged a children’s day- a day for children of ALS patients and grandparents to have fun and forget.  I ordered fifty copies of What Did You Learn Today? Warren, Nora and Adam Ames arrived with the books.

Warren was friendly and respectful.  He and I had a lot in common and talked freely about our losses.  We missed our soul mates.  We cried a lot.  We felt empty. But it was his children- Nora and Adam initially, who I couldn’t seem to forget.

Adam was seven years old.  His hair was disheveled and his laces untied.  His face was that of an older child, concerned.  Nora was 11, tall and svelte- nearly my equal in size.  Sweet and endearing.  I immediately felt their loss like a pull in my stomach.  I wasn’t
sure if I wanted to vomit or run.  Instead, I pulled them both close to me, into my arms. Sat them on my lap and tried to give them, briefly, a mother’s love, my love.  I wanted to let them know that they would be ok.  Their eyes, though, said differently, we need our mommy.

That afternoon, I fell head over heels in love with Nora and Adam. Warren was dating someone so I invited all of them to my home for dinner.  Dinner was nice.  Warren “forgot” to invite his girlfriend.

Then he ended his relationship.

We met at the park.  We met at the zoo.  Whenever we were together, we were whole.  A man, a women and three kids who enjoyed being together and having fun. We were all sad independently, but when together, we managed smiles and laugher.  Surprisingly, Warren and I had very similar parenting styles.  Tina and I had similarities too.  She worked with children, so did I.  She was a child’s advocate, so was I.  She wanted the best for all children, so did I.

One day, after a dinner at Friendly’s, I asked Warren about Tina’s response to her diagnosis.  He looked at me, tears running down his face.  “She,” he paused, gained his composure and whispered, “she said, before she collapsed to the floor,” but who will raise my children?

It was then and there, in the parking lot of Friendly’s, that I knew I was chosen to raise Nora and Adam.

People ask me frequently about my relationship with my step-children and how we’re so close.  It is very simple really, so simple that I have no elaborate answer.  I have never viewed Nora and Adam  as step-children, but as my children. My maternal instincts, the ones that were sacred to raising Alina, were sacred to raising Nora and Adam also.  I have loved them equally and unconditionally.

Love and faith are the two main ingredients needed to raise children in a blended family and in any family.  Let love guide you in your parenting and never differentiate your children negatively.
Always celebrate the wonderful qualities each child brings to the group.  Have faith in your maternal instincts and
their strengths.

This best Mother’s day, Adam, now seventeen, gave me a handmade card.  It read, “God could not be everywhere, so he invented mothers.”

Then he added, “Thanks for being everything to me.”

Does love get any better than that?  Does motherhood?

I did not give birth to Adam or Nora, but every part of my soul thinks I did.  And no one can tell the difference.