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Sunday, April 05, 2015

12 years ago on the night before Easter while in the Pediatric Intensive Care Unit at Hasbro Children's Hospital, I sat vigil throughout the night by my daughters bedside. We were on the cusp of change. Decisions had to be made. Choices, which would affect what direction we would take and ultimately what the future could be for our family.

12 years later on the night before Easter again I sit vigil through the night, this time watching her sleep peacefully in her own bed. Once again we are on the cusp of change. I can see it – I can feel it.

Over the past month or more the number 12:12 has been reoccurring. It is everywhere I turn. A few weeks ago I turned to an intuitive friend to ask for guidance and interpretation. He explained when combined as the number 12, the angels are sending you the message to stay positive about the future possibilities which are unfolding before you. They want you to ask for help, to trust and to stay optimistically focused on your highest possible future. It is a reminder your angels are supporting you in manifesting your goals, dreams, intent and life purpose. You are on the verge of a positive change.

I believe in the power of positivity. It is fitting that this “verge of a positive change” comes at Easter, a time of rebirth and renewal. Like the bulbs ready to emerge from the soil or the buds ready to spring open, so is our optimism, focus and intent.

Wishing all a Blessed and Happy Easter

March 26 – Today marks 12 years

Thursday, March 26, 2015

This morning a family, just cities away faced unfathomable heartbreak. Twelve years ago our family could have had the same ending. Somehow, she and we survived.

It has been a journey filled with uncertainty, fear and pain. It has also been filled with unconditional love, gratitude and joy.

I woke this morning with both of my children and future daughter-in-law all under one roof. I am blessed. Another family started their day not realizing it was the last they would have together.

Life as you know it can change in a moment. Treasure the ones that count. Don’t trivialize or take them for granted and don’t give magnitude to those that do not.

Not Alone

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Not Alone

Tuesday, March 10, 2015

March is Brain Injury Awareness Month. For those living with brain injury there is no one month, no one season that brain injury is most prevalent. It is always there.  In recognition of the 5.3 million Americans living with TBI-related illnesses, the Brain Injury Association of America has chosen for its theme for 2015-2017; Not Alone.

It is a difficult road to travel and one which can be made easier with the availability of support.

There is something very special and comforting about being “with” someone who knows. Someone who knows you don't need mindless chatter to fill the quiet space or that you just need someone to hold your hand. Someone who knows that look in your eye – knows when you are too tired to go on but you will because that is what you do.  Someone who knows better than to tell you not to stay up all night or don't cancel your plans but instead, gets you a pillow, a blanket and makes sure you have something to eat and something to help pass the time. 

And, if you are not fortunate enough to be able to reach out and touch that someone who “gets” you and “gets” it in that conventional way…then it is just as comforting to know they are right there…across the keyboard…watching, waiting, thinking and pulling for you.  In return, you have been able to bear virtual witness to their life and to experience the essence of who they are and for what they stand. You have seen each other through the good times and the bad. And when you log on and check in and see a notification confirming they are “there” – your heart knows you were never alone. For your kindred soul, your keyboard connection, your online friend is just a stroke away.

Flashback Friday

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Flashback Friday

Friday, March 06, 2015

Early today a visit to the second floor of 2 Dudley Street brought back strong memories.  It was there after valeting the van, exiting the elevator, walking away from the check in counter and finishing up with what has become our routine x-rays, the flashbacks came.

Momentarily I was disoriented.  Lost, even; – in such familiar surroundings.  This campus had been my home for over 25 years.  Its buildings, tunnels and walkways, corridors, nooks and crannies had been mine to roam.  Over the years I had been there at the break of dawn and in the dead of night.  At one point in time it was that place where “everyone knew your name”.  My history was interwoven with its growth-having been part of the launch of Lifespan television and even singing the National Anthem for the groundbreaking of the Emergency Room.  Now, I felt a stranger wandering in the recesses of some nightmare.

And just like that I was back.  And where I returned to was the sanctity of a physician who has held our hand and our hearts for just days shy of 12 years.  Dr. Craig Eberson entered our life in the worst possible scenario.  Our meeting was one of a frantic and urgent nature.  And when on this cold March morning of 2015 he walked through the office door to greet us, I saw the same compassionate expression in his gentle eyes and felt the same grace and strength in his hands as I did all those years ago. 

Our visits are always over too soon.  Even though we are booked for triple the time allotted and take much more than that, it never seems enough.  He marvels, swells with pride and says “remarkable” as much to describe the young woman before him as to describe her presentation as this point in the journey.  Finally it is time to go-but, before we do our eyes lock and there is an unspoken exchange followed by a hug. 

I am back in the familiar now-I am in the present-back in a place of gratitude and marvel.  #For Life as You Know It Can Change In a Moment.

Altered State

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Altered State

Tuesday, October 14, 2014

One year ago this evening I wrote about anticipation as we settled into a hospital hotel room in New York City. It was Columbus Day 2013 and when I went to bed that evening it was the realization of a dream that had begun 8 years prior. The next morning we were off to capitalize on what amounted to dozens of phone calls, hundreds of emails and thousands of hours of research – culminating in a resounding yes and acceptance into a research study for altered states of consciousness. Those 4 days spent cocooned in the bosom of science did not disappoint for we emerged altered.  Altered, not visibly on the outside, but within where all real changes occur. And the catalyst for that change was knowledge. More knowledge was amassed in those 96 hours than in all the time prior. Alas there was no magic pill, no instant cure. What there was – was opportunity, for growth, for metamorphosis. Information, confirmation – which in turn gave us direction to spread our wings, expand and fly.

I closed my blog one year ago saying Carly Simon when writing about Anticipation said “We can never know about the days to come” – I said then, and I repeat now – and you'll never know unless you get out there and try.


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Wednesday, October 08, 2014

Over the last 2 months we have said goodbye to several people instrumental on our journey. Goodbye is never easy, though there are certain scenarios where it is meant to be for it is part of a necessary cycle. Though the intellect understands, it does not make it any easier on the heart.

While we did not have the opportunity to work with her for long, we saw the glimpse of possibilities through a summer intern named Kelsey. She brought much to the table. Her smile and youthful enthusiasm were matched only by her knowledge and will to succeed in her quest. And that quest – simply to see Tori succeed. I cannot imagine where we would be had she not decided to go out for coffee and to read the paper one morning. This simple choice led to an interesting read for a how I spent my summer vacation assignment titled, “Volunteering with a leading cutting edge research group making advancements in Augmentive Technology”.

Next, we said goodbye to James our music therapist. He was always so gentle and sweet. His smile and light blue eyes twinkled at the sight of Tori. She melted in his presence and giggled when he sang and guided her hands along the piano keys. He moved on to bring the gift of song to children at a major hospital system in Boston.

And then there was Steve our physical therapy student. Ever the professional, he was always so proficient, and polite. And he was also wrapped around her little finger. Gosh he loved working with Tori. She could pull all the barriers down with one dip of her head and an upward glance peeking at him through a stray strand of hair. His studies here are concluded and his internship and travels await him.

Finally, our last goodbye is probably the hardest. This will be made most difficult because she will be within our reach but unavailable to us. For years we visited this physician once every quarter for Botox injections to relax tone. Not one physiatrist in this entire state had a practice devoted to brain injury. There were sports related practices galore but none related to our cause. Then finally, on one of our quarterly visits she told us she was “moving” over and taking charge of rehabilitation services. We were home. And it was a loving and nurturing home. We grew under her tutelage. Now, she is moving on to an Institution that recognizes and will maximize her worth allowing her to nurture so many others in their most vulnerable states while inpatient and in the infancy of their recovery journey.

And while we will feel the void left by all I am reminded of the lyrics from one of my favorite songs:

I've heard it said
That people come into our lives for a reason
Bringing something we must learn
And we are led
To those who help us most to grow
If we let them
And we help them in return
Well, I don't know if I believe that's true
But I know I'm who I am today
Because I knew you…
Like a comet pulled from orbit
As it passes the sun
Like a stream that meets a boulder
Halfway through the wood
Who can say if I've been changed for the better?
But because I knew you
I have been changed for good

Today I Run the BoldrDash Again

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Today I Run the BoldrDash Again

Saturday, September 13, 2014

Today I run the BoldrDash – for the 3rd time.  In many ways, each time is a first.  A first, not only because Lynn Hall the race director and her team keep coming up with a new and improved course, but because each time another layer is added to the reasons for why I choose to be BOLD.

My 1st BoldrDash was more of a spiritual quest, a journey to unlock the metaphysical chains that bound me emotionally, a freeing if you would, a “let it go” to a way of thinking and a way of living that didn’t quite go all the way through.  I prepared mentally and physically for that challenge and when the starter pistol rang on September 15th, 2012 I was in the best shape of my life.  I tackled every obstacle (except one –the monkey bars) with zest, a smile never left my face and my mantra of “anyone can do one more,” ringing in my head.  I crossed the finish line with the best mental focus I had had in years.  And while I may have entered the race by myself I never felt alone.  With each stride I felt the strength of all those who love and support me.

It was done.  My challenge complete.  I could put it behind me.  But something happened.  A band of people came forward to join me, to form a team, to be BOLD.  In 2013 we were small in numbers but we were mighty in spirit and we were Torinados.  I was not nearly in the same physical shape as the year before and to my delight my race partner was more than willing to push, pull and drag me along when needed.  One of my favorite moments captured on film is a picture of my partner and I standing on pegs on opposing sides of a wall leaning in, shoulder to shoulder, bound to each other making our way down the course.  My son and I navigated that course and crossed the finish line hand in hand.  There are no words to describe that feeling.

The Torinadoes are a force to be reckoned with.  Our numbers have grown.  At Yawgoo Valley today among hundreds of other runners and spectators there will be a team.  This team is comprised of friends, old and new and family.  On the start line today will be my son, sisters, my brother, nieces and nephew.  I will be running with friends, friends of friends and those I hope to come to call friends.  Cheering us on from the sidelines will be a huge support system sending love, best wishes and bearing witness to our accomplishment.   With my daughters name on our chests how can we go wrong.

And today, the third time – the charm.  2014 has been a challenging year.  I’m not where I would like to be as far as race ready.  I haven’t gotten back to the Cathy of 2012.  But that’s okay because I won’t stop trying to reach my goals whatever they may be.  That’s what I learned from my 1st Boldrdash.  Whatever your obstacles are in life the only time you fail is when you don’t try.  If you can’t go over it, go under, if you can’t go under, go around and sometimes you just have to go through it.  

Someday I would like to run faster than a speeding bullet, jump higher than a small building or at least onto a box, but for now being able to get “up” a ski slope rather than down it is a triumph in itself.  The athlete buried inside me hasn’t given up yet.  Maybe it’s the 4th year.  Whatever your goal is go for it, be BOLD.  That’s what the Torinados are just about to do – wish us luck!

The 11th Year

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The 11th Year

Wednesday, March 26, 2014

Life as you know it can change in a moment.  Most times change of any significance is the outcome of some master plan or concerted effort towards a desired goal.  And sometimes that change can be the result of a choice, self-directed or randomly selected – consequences you could never have predicted, imagined or even thought possible. 

Today marks 11 years since a change of unpredictable, unimaginable magnitude – activated by another’s choice – struck our family.

So impossible, at times it seems a lifetime ago.   Yet, at others, because the wounds are still so raw, feels as if it just happened. 

The distance between “then” and “now” could be measured in so many ways.  It could be measured not only by the marks on the calendar but by the rounding of my shoulders or the sluggishness to my step.  It could be measured by my sons’ amassed knowledge of neural activity and his familiarity with rehab terminology.  It could be measured by the marked improvement in my daughters’ stamina and endurance for therapy or by her increased need for and the sheer numbers of her durable medical equipment. 

It is easy to imagine the expansive list of things that will never be because of this change and to measure the void these will leave.  You cannot deny the loss of life as we knew it, or the pain and grief it has instilled.  It stares at you, it haunts you.  It could, if you let it – threaten to pull you under.

So much was taken on March 26, 2003 – so many hopes and dreams for the future were wiped away.  Yet, so much remains – for we still have each other.  Since that fateful day, always steadfast by my side is my rock – my son.    Soon, he will marry and together, with the young woman he has chosen to be his wife they share in the love and care of Tori.  At the center of us all is Tori.  To have her truly gaze upon you with those big brown eyes stops you right in your tracks.  And, if you are lucky enough to be gifted with a smile, it is as if you have been granted absolution such is the power of her spirit.

There are moments as a parent that make your heart leap.  The moments when your vision immediately begins to cloud for you are unable to see clearly through the rising tears and you feel a catch at the base of your throat.  For me all it takes to provoke these feelings is the sight of my children, engaged – loving – together.

It is the moments, the minutes in our lives that all add up to complete the story.  For while it is wonderful to project, or expect a lifetime – what we truly have is the now.  

It is the moments when you realize how much a smile – a word – a glance, can change your day. 

It is the glory of and the gratitude for the warmth of the sun, reassuring conversations, and the sound of infectious laughter.  It is the ability to watch your child have a restful night and an uneventful morning.   It is the army of people that have watched over, prayed and cared for us that have created moments so beautiful and loving they have touched us to the core.  We can measure these years in the moments spent with family and friends, old and new that have come to walk with us on this journey.

60 minutes an hour.  24 hours a day.  7 days a week.  365 days a year.  Yes, today marks 11 years or 5,781,600 minutes.  Moments to reflect – to appreciate – to love.  Because, Life as you know it can change in a moment.  Choose well.

Mishaps and Opportunities

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Mishaps and Opportunities

Wednesday, December 04, 2013

It is midnight and after arriving home from the MADD Candlelight Vigil Tori is finally settled in bed.

After all the years of attending this solemn event this is the first year I did not trust my voice, or my legs enough to walk to the podium to speak and to light a candle. It certainly was not for want or desire.

It had been a challenging day from durable medical equipment being well…, not so durable, to a young woman being uncomfortable and inconsolable, to trying to replace a cancelled caregiver – the hits kept on coming. Finally, things seemed somewhat steady and I was even able to meet my commitment to perform, go to work and leave the house for a total of 2 hours.

Once I returned it was time to leave for the vigil. As Tori descended in the lift I noticed the wheels of her chair were jammed and I scurried to meet her. Instead I fell down the stairs breaking my shoe and spilling water for her evening feed all over me. Righting myself and unjamming her wheels we proceeded to enter the van. As I backed up the ramp my good heel caught in the slat, I walked out of my shoe and turned my ankle. Continuing on, securing Tori in place and locking her in, I finally sat in the driver’s seat. I then discovered I had the wrong set of keys. Undeterred I ran into the house, grabbed the correct set, came back out, turned on the ignition and realized we needed to go back inside, change and start all over again.

At this point I wanted to put my head in my hands and cry. Not because of the series of mishaps befallen me but more so because I knew we would soon be in a room filled with people unable to experience such day to day mishaps.

Had I lit a candle this evening I would have lit one in honor of missed opportunities. Not only the missed opportunities of picking up dirty laundry off of the floor although it’s been discussed a hundred times, or the missed opportunity to remind someone to stop and get the dry cleaning on the way home, or to tuck in your shirt, or smile for the camera. But I would light a candle in HOPE that all of us do not miss the opportunity to tell those around us how much we love them, or miss the opportunity to say thank you to those who keep our roadways safer for all of us and to those who put their lives on the line every day for people they have never even met. I would light my candle in HOPE that we never forget that even in the face of unbearable pain and grief and loss at the heart there is love.

I look forward to the vigil every year. Yes, I am certain the anxiety of what was to come contributed to my clumsiness throughout the day. It is hard to put into words the feelings that go into this evening. And yet, I cannot imagine not being there. I cannot imagine not being with those who know, those who you only have to look into their eyes, to feel their arms around you and those for whom no words need to be spoken to understand. While the grief is palpable, so is the love. I light my candle that no one miss the opportunity to experience unconditional Love and eternal Hope.


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Tuesday, October 29, 2013

When Tori was 9 years old she rode a horse for the first time outside of birthday parties and pony rides. The horse was named Sparky and within 10 minutes he broke away from the trainer and threw her to the ground. Tori got right back up and on the same horse.

Today, all these years later, once again Tori got back in the saddle. The farm was traded in for a therapy room and although this horse was named Sparky as well, he required an electrical outlet for his inspiration rather than a special treat.

Hopefully one day the mechanical horse will be replaced with a real one and then it will be Tori herself who will be “throwing” all of us onto the ground and on our knees in admiration and thanks.

When you come to the edge of the light you know and are about to step off into the darkness, faith is knowing one of two things will happen… there will be something solid to stand on, or you will learn to fly