Fifty Gifts-#12 The FIVE

Five Notes of Gratitude

At 45 years old, in 2010, when our third child was preparing for college and my daughters were in the midst of their college educations, I had time to reflect once again about the direction my life was heading.  I had spent the last seven years focusing on three very important people: my children. They were, in my opinion, now three young adults who needed me less.  It was time to stop hovering and start letting them fly. It was no newsflash how lucky I was to have the freedom to consider where my life was going. I was in good health, had wonderful friends and an incredible thirst for learning and growing.  I was blessed with a husband who encouraged my free spirit, tree hugging, dreamer thinking.  I was a massage therapist by trade, a mother, wife and nurturer in many other realms too.  Now that my son was also on his way, my time as a daily hands-on mom was fading and I knew that I had the opportunity to not only dream, but to commit to a dream and make it a reality.  I knew also that the nurturer in me would always be seeking new opportunities and this time in my life, although uncertain, would welcome new gifts and new adventures.

One winter afternoon, I was canvassing the paper or internet (can’t remember) and learned about B.I.G. (Believe, Inspire, Grow). From its website: B.I.G. is a gateway for women entrepreneurs. We offer support, education and relationship building opportunities for our organization comprised of amazing and diverse women. We aim to provide relevant business information, peer support and motivation to educated women who desire personal and professional fulfillment. When women empower women, magic happens.

As the story goes, I drove one hour north, in a February winter storm, to attend my very first B.I.G. meeting in Bernandsville, NJ.  Each year since, the storm gets stronger and I recall myself walking against the wind to seek shelter inside the church. I arrived to a beautiful open church and the snow was falling down around us, visible through the many cathedral windows. The women there were excited entrepreneurs.  I stood and declared my idea. I was hugged.  I was cheered.  I was home. It was there I decided, after one month of refection, that I would start Hope Loves Company, the only non profit in the U.S. with the mission of supporting the children and grandchildren of PALS (people living with ALS).  I had chosen the name in 2007  and one year later or so, my  sister-in law, Keiren, created the perfect beautiful logo which captures our mission. While raising three children who had lost parents to ALS, the name Hope Loves Company came to me.  Our children had all lost a parent.  Our children had struggled with that loss as we had.  More children needed support too. It was the beginning of what is now a fully-functioning and rapidly growing non profit.

I was congratulated and uplifted in my declaration there among the women and the falling snow. At that time, there were only B.I.G. meetings taking place in North Jersey, so I immediately reached out and contacted its founder, Tara Gilvar and offered to run a meeting in Central Jersey which I continued to run until just last month.

During one of our recent B.I.G. teleconferences, it was suggested, as a feel-good act and new year practice, to reach out to five members with a good old-fashioned phone call or letter.  I love me some good old-fashioned and chose the letter option of the recommendation.

I sat and pondered.  Who do I admire? Who has inspired me to be a better person? Who is always positive, uplifting and supportive?

I chose five thank you notes and purchased five small trinkets.  I inscribed the cards with gratitude to my mentoring recipient.  I sat smiling as I wrote and thought of  each person, her gifts and her reaction when the card was opened.  They would be receiving real mail.  They would enjoy opening my card. This might be a ray of sunshine on a cold winter day.

With each note, I received a phone call.  On the other end of the line was an elated voice, filled with surprise and joy.  Each phone call was sincere and meaningful and each made me smile. The 5 notes were a hit and the gift continued to give to me as well.

When I was little, around twelve or so, I did something very unusual for my age.  At Christmas and on New Year’s Eve, I would pick up the big yellow phone book, open it, close my eyes, point somewhere, and call the number before me.  I would then say either, Merry Christmas or Happy New Year to whomever answered the phone.  “Well thank you!” a cheery voice would say.  We’d have a conversation and finally, soon into it, I’d get asked, “Who is this?” My answer was always the same: “A stranger who wants to spread holiday cheer.”  It was a silly kid thing but it brought me great joy.  I remember speaking to a few people who lived alone and simply enjoyed talking to someone, to me, a twelve year-old (strange) kid on a holiday that might have otherwise occurred without “company”letter.

It took me a long time to narrow down five people to send notesletter2 to.  This has me thinking. Why do I need to stop here?  Why not extend the practice and the hopes of my twelve year old self to bring cheer? Why not send five more notes in February on Valentine’s Day?

There are few things I need in this life.  I know I need love and thrive on it.  I need my family and my friends, my health and my work.  I need my faith and my prayers. The selfish part of me needs to add something to that list, the need to make a difference.  For this reason I can’t wait to write, send and share five more notes of love and appreciation in February and hopefully, inspire others to celebrate my Fifty Gifts, #12  by following my lead.

 

 

 

A Unicycle for One-More.

FIFTY GIFTS IN THE YEAR OF  MY 50TH- 1st entry Dec. 25th, 2015

In October, I attended a Women in Development meeting at 8 am in Lawrenceville, NJ.  At a table cluttered with scones and coffee, I was surrounded by smart and educated women, who, for the most part, are executive directors and presidents of non-profits.  The topic was appropriate gifts for your organization.  New to the scene and thinking, aren’t all gifts needed? I blurted, “Please tell me about a gift that would not be best for your organization.”  Having run Hope Loves Company for five years on a very tight budget, I assumed all gifts are appropriate.  We need gifts! The woman beside me politely answered my question with this scenario:

She began,”I have founded Trenton Circus Squad. If someone wanted to donate a couch, we would have to consider if we needed one or if there’s room for that particular couch.  But if someone wanted to donate a unicycle, we’d say, YES! OF COURSE! We give them to our children when they graduate from our program.”

She was seated beside me.  I had held the door open for her when she walked in and she needed something that I had.

“Got it,” I began.  “And it just so happens that I have a unicycle to donate and can’t wait to give it to a performer and would love to do so for Christmas!”

The women all turned and looked at me.  They  wanted to know the answer to the same question: WHY do you have a unicycle?

My husband and I are blessed to have a son, Adam.  He’s in the Army,  in another country far from his mother, and I miss him.  The unicycle hangs in the garage- waiting for a courageous soul to ride it again.  I thought of Adam’s teen years and how we came to own a unicycle. Adam was  not just an  active boy – he was ALL BOY.  When he was born, he weighed 10 lbs. 10 ounces and the congratulations sign out front declared, “It’s a TRUCK!”

I have always enjoyed sports and a good challenge but Adam and I were not necessarily on the same page when it came to certain challenges.  I did not want to dress in camouflage and go swamp trekking.  I did not want to shoot a bow and arrow at a living thing. I did, however,want to bond with my son.  I started by wrestling with him.  It was a great workout for both of us until he soon outgrew me and my skills and joined the wrestling team- thank God! Then I invited him and his friends to a challenge of jump rope.  “Here’s a twenty for the person who can do the most jumps without missing.”

I believe I won.

We upped the ante by running in between (once around the  yard) five sets of 100 jumps.  He soon bored of this “fun” way to pass the time with his crazy mom.

The task to keep him entertained and out of young boy mischief (lighting matches, bee bee gun mishaps, accidentally strangling the dog by securing a Walkie Talkie around his neck) got trickier. So we bought him an 80 lb. heavy bag and boxing gloves and Adam and I began working out together.  We got him weights,  a  flex machine, and a dear friend bought him a pull- up bar.  All that stuff  occupied a corner  of our basement. Adam finalized the decor with a full size poster of Taylor Swift and  various video games (which we limited).

But as Adam grew, he, like most teens, outgrew his mom time.  We were planning a family party and I thought, let’s get a unicycle. The unicycle was a big hit that day, but only one person in our family took real interest in riding it – Adam.  He spent hours and hours practicing.  Months later, he could successfully ride the unicycle up and down our driveway without falling.  It was so wonderful to witness him master that skill and the smile on his face was priceless! It was a unicycle for one -amazing son.

Soon it will be a unicycle for one more amazing child.  I can’t wait to attend a session at Trenton Circus Squad and bequeath this gift to another curious child-one who is learning new  talents and who will receive the unicycle as a gift for his or her accomplishments at the end of a performance. Learning to master a unicycle is much like finding your way as a teen.  It’s overwhelming, scary, and challenging. You can be supported and cheered on, but in the end, it’s you and the journey and you do the riding. Adam gained strength, confidence, and balance from the unicycle.  I hope it brings those gifts and many more to its new owner in 2016

trentoncircus2s

From the Trenton Circus Squad:

TEENAGERS, KIDS, TRY THIS!

Do you live in or around Trenton? You can join Trenton Circus Squad. There is no charge. And it doesn’t matter whether you already have circus skills or not.

You will learn incredible feats, make new friends, and work with a team of others. You will perform for your community and teach skills to younger kids. Be warned: there will be a lot of fun and laughter involved!

For more information about Trenton Circus, go to http://www.trentoncircussquad.org/

 

 

 

As My ALS Journey and Family Expands!

45331_497041290316553_1447516597_nALS entered my life in 1995 when my young husband, Kevin O’Donnell, received his diagnosis.  He was only 30 years old and it would be difficult to put into words how that day and diagnosis impacted us for six years, and me for nearly two decades now. I have written extensively about my years with Kevin, as they have shaped my entire life. For his love and companionship, I am truly inspired and grateful.

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. 

An Old Soul Christmas

imagesMy children (young adults at present) may see me as old -fashioned for many reasons.  I believe in strong core values, the act of saying please and thank you and the relevance of sharing dinner and prayer together. But, I’d rather think of myself as an old soul.   I’ve been comfortable with that persona since my early twenties, but now that I am 50, perhaps I’m just old!

According to Urban Dictionary, an old soul is a “spiritual person whom is wise beyond their years: people of strong emotional stability”.  Basically, someone who 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 always 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 myold fashion xmas children, there’s always Valentine’s Day to look forward to!

My Hands With Heart

12654650_1025238000869289_1421303934361956146_nFor years, I hated my hands for many reasons.  They have always been small, like the rest of me.  They are neither feminine nor beautiful. These days they are wrinkled and striped with veins, blue and bulging.  A few of my fingers are arthritic, wide and misshapen.  My fingers end with stubs for nails, nails which have rarely worn hues of red or pink.  Some days, I wish for different hands, hands that are delicate and pretty- with nails that can be dipped in dusty rose, chartreuse or coral without looking odd.

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 8th 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, now my mother -in -law Marge.  He was funny, handsome and strong.  Two years after dating, I became his wife.   Then my nurturing 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 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.

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.

One day while snuggling with Kevin, I 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 self moved gingerly around my sweet 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 shoulder muscles and feeling them melt under my touch.  The world of ALS melted too.  Kevin was at peace. So was I.

There was an internal melody encouraging my movements; my fingers moved with positive 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.  The enormous love that I wanted desperately to share with Kevin poured through my fingertips. It was the beginning of a new expression of my love for him and then for others.

 

Twenty years have passed and I am now a licensed massage therapist. The gift of massage still gives to me as it did that first intuitive moment with Kevin. I massage people who are feeling pain, grief, exhaustion, and anxiety.  I start each session with thoughts of my journey and how I arrived to that place and that person and not a massage goes by without enormous love from my hands with heart.

The Blessing that Jack Is

The Blessing that Jack Is

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

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.