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.

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Being Present is the best Present!

began writing this piece early in Oct.

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

Warren and Jodi’s Excellent Adventure!

Estes Park
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 On the way up....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.

FALLing into Myself….

I have always been “open” to new things and ideas. There’s no better way to appear strange as a kid then to be open. When growing up, most kids thought of fall as a time to kick leaves or jump in a mammoth leaf pile, while I observed the metaphor that leaves are beautiful in their death- that the colors are most vibrant before they fade forever.

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

The Gift of Motherhood

My Amazing ChildrenMotherhood is a gift that I always wanted to open.  As a little girl, I rocked dolls to sleep and hugged any baby, plastic or real, within my reach.  My sister Kate, thirteen years, older, had her first child when I was seven years old.  I remember the night she and my first niece came to visit.  It was two am and I was sound asleep. They had flown in from Florida on the red eye.  I had twin beds in my room- which I shared with another sister Kim.  Kim had a sleepover with her friend so I welcomed the chance to have baby (and mommy), all to myself.  Kate sat on the bed, turned and propped up her feet.  Her baby was a bundle of pink.  I wanted to jump up, to see my sister and her marvel but knew that if I made a peep, I would get in trouble for being awake.

 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.

The Great Escape

The Great Escape Women

The only time I rise before 6 AM better be for a good reason, and this was.  My alarm buzzed annoyingly at three AM and I awoke, cheerful and giddy as if I had slept twelve hours instead of a mere two.  It didn’t matter though, because I was going on vacation. It was strange waking and driving through the darkness of odd hours-hours filled with quiet and inactivity. Hours of uncertainty and loneliness.  It’s even stranger to embark on a plane  without your family- three kids and a husband. But I did. I left my family for a great escape with three amazing woman.

I love my family, so it wasn’t that I needed to escape them.  What I really needed to escape was “the race”.  Most days I hit the ground running and then race all day to get things done.  Some of my sprints are important, like work and groceries and bills.  Others are annoying, like cleaning up dog vomit, changing the cat litter, and scrubbing toilets. I am the one in my family who does such things and it was nice for once, to know that I would leave the daily grind back in New Jersey for four days- where it would wait for me until my return.

Linda, Heather, Kristen and I met at the Atlantic City airport, at the ungodly hour of five AM – half asleep but full of hope for what we all needed- rest and relaxation.

Smiles.  Hugs. Yawns.  We needed coffee as a group and boarded the small plane at 6:45, feeling as though we had been up for days, not hours. None of us was sure how the weekend would unfold. Would the weather be nice?  All of us mothers, we normally didn’t have two hours to ourselves, let alone four days. Would the kids be ok without us? While we were about to fly to South
Carolina, I wondered if the one hour transition would allow less worry and more piece of mind. Could we leave the worries of schedules and wash and carpooling kids in New Jersey?

I really hoped so, for each of us.

The plane landed safely in Myrtle Beach, South Carolina before nine.  Eighty degree weather caressed our faces as we emerged from the airport, tired and stiff. We rented a car, a roomy Hyundai Sonata, dark red so it never hid from us in the parking lot.

The Sonata took us first to Wal-Mart, where we purchased food to nourish our bodies- – grapes, apples, bananas, water and then even better food to nourish our souls- Oreos, biscotti and hot chocolate.

With enough food for four days, we travelled to Linda’s condo on the beach, where we were immediately made to feel at home.  Her condo is newly refurbished and colorful.  There’s a balcony and from six floors up where we were, we could see schools of fish and a horizon of boats.

Soon after we plopped our groceries and luggage at the condo, we suited up and headed to the beach. The beach was peaceful and the sound of the ocean lulled us into naps. They were short though, because we had much to talk about.

There was the normal stuff that fills conversations, work and diets and hair colors.

But, there were greater issues to share.  All of us are survivors.  Survivors of divorce, of loss, and of disappointments. Of things that would put some people to bed, for months.

Still, we went to the beach with all of our pain- years worth- years that have been hard to us.  We went to the beach with worries for our children as they face life’s challenges.  We went to the beach praying for those we love who are in need.

And on the beach we sat and supported each other. There were no judgments or harsh words.  No arguments or tense voices.  It was safe and inviting. It was warm and breezy, and our conversations were carried out to sea in waves.

We talked late into the night.  We laughed over silly things and giggled like our younger selves long after we should have been asleep. It was carefree; joyous.

And although we tried to escape life for a few days, our cells phones rang, and we were needed.  Ten hours from home and we still helped our families find frozen dinners, uniforms and phone numbers.  We kissed boo boos over the phone and even made doctors’ appointments.

On one of the days, we visited Brookgreen Gardens.  A National Historic Landmark, Brookgreen has more than one thousand sculptures artistically displayed throughout fifty acres of plush gardens and impeccably maintained grounds. We walked and talked and took pictures.

There was a gigantic grasshopper who smiled for the camera.  The boys would love to see the enormous, squirmy creature.  There were butterflies unknown to us but more colorful than Monarchs. There were flowers with fragrances worthy of hand blown glass bottles.

Brookgreen was a wonderful culmination to our great escape.

We left South Carolina on the fourth day, late at night, anxious to hug our families.

I drove home, once again, in the darkness of odd hours-hours filled with quiet and inactivity. Hours, only days ago, filled with uncertainty and loneliness.

On the hour drive home, in the wee hours of the morning, I thought of my dear friends and couldn’t remember what loneliness felt like. My friends were no longer with me, but somehow, I still felt secure, supported and loved.

There was nothing fancy about our stay at Myrtle Beach.  We did not get pedicures, massages or new outfits. We did not go scuba diving or dancing.

It only took one ingredient to make a great escape, great women.

Can’t wait till next year.

"For the Boys"

The Gentle Man

You are my gentle man

As we walk holding hands, through time,

I am guided by your gentle ways.

Soft spoken, soft hearted,

You quiet the clamor of life.

The worry.

The doubt and sadness too,

Have dulled to whispers.

Soft footed,

As though you’re cotton,

You guide us,

To sacred ground and honored earth.

Through places where God resides,

and loving hearts beat strong.

Where hope lands softly

On injured souls

Then flies among the

Monarchs and God’s angels.

You,

Are my gentle man.