Monday, October 14, 2013
Webster's Dictionary states the definition of anticipation as 1. A feeling of excitement that something is about to happen and, 2. The act of preparing for something. Carly Simon says “anticipation is making her wait”. I say, anticipation becomes reality Tuesday morning, the 15th of October.
This feeling of excitement something is going to happen has been a long time coming. It began in the middle of a sleepless night in 2008 when the only light in my room came from the flickering of the television. In awe I watched a program repeated from its original airing in 2006 of a doctor making discoveries in the world of altered states of consciousness. Not wanting to break the spell I was under, as if any sudden movements or introduction of increased light would arouse me from some dream, I reached to open a nightstand drawer and fumbled to find a pen. With pen firmly in hand and finding no pad to write on, I grabbed a Kleenex box, turned it upside down and began to write as the credits rolled.
Thousands of Internet searches, hundreds of emails and phone calls, dozens of case studies, a few well placed introductions and 5 years time have led to this moment.
9am tomorrow morning the journey begun in 2008 continues-but this time rather than on the outskirts-through the front door.
“We can never know about the days to come” – but…, Life as you know it CAN change in a moment – or, over the course of 5 years. Thing is you'll never know unless you try…….Anticipation is making me wait….
Friday, September 27, 2013
On September 27, 1990 a beautiful light came into this world and appropriately we named her Tori. There was no way we could tell what lie ahead and yet her name says it all. In Japanese Tori means bird, able to fly above and in old English the translation is for victory or victorious. The American translation is conqueror.
My translation is a joy to behold, an honor to love, and a privilege to call my daughter. Along with her brother she has brought incredible meaning, unconditional love and, just as children should – lots of gray hair into my life.
23 years old baby girl. Momma loves you.
Wednesday, September 18, 2013
A portion of this evening was spent at a MADD Board meeting. Appropriately so, each meeting is opened with a moment of silence dedicated to those we have lost and to those altered forever by a choice. Before proceeding with the rest of the agenda it has been our tradition for a member to present a question to the group. This evenings question – “what is your favorite sound?” In typical fashion our answers were a wonderful mix of humor and heart. Sometimes when I hear the question I silently beg the round to start at another end of the table allowing time for me to think of an answer – no time was needed this evening as I know the answer to this question as well as I know my own name.
My favorite sound is my children’s laughter. From the first moment they were old enough to interact with each other and romp around a crib or playpen the lyrical sounds that escaped their mouths turned the corners of mine upward. As they grew and their play became more intent their laughter grew. It came so easy, so spontaneous and free. I have vivid memories of quietly peeking around corners into where they were playing and spying on them watching the delight in their faces as they giggled together. The sound so infectious I could feel a chuckle welling up from my toes. Once a little older, laughter none the less, but sometimes with a mischievous undertone as they found ways to push each other’s buttons. And then, the knowing laughter that comes from two people who have shared so much and understand each other so well…
Much has changed over the last decade. So much in our lives is different. And yet – there is much that remains the same. There is that undeniable knowing bond that transcends all. There is that sound that I am fortunate to still hear, same but different. My favorite sound is my children’s laughter.
Friday, August 16, 2013
To me, a perfect day is all about balance – the yin and yang if you would. Yesterday was a perfect day. It started as always with my girl. Emergency backup stepped in so I could be off to a meeting and the day progressed from there.
A balance of work and play, family and friends. And the best part is they are all entwined. My work is my mission and my passion and I get to do it alongside like minded individuals – some I have come to call friends, sisters of the heart, brothers – family.
From the meeting I reported to work . Stage – that is. How lucky am I to get paid to sing and dance? Right from advocacy and prevention to Broadway and Vaudeville. Once again, all done in the embrace of family. After the matinee show it was back to where it all began.
After settling in with Tori and taking her through her late afternoon and early evening paces we decided to celebrate the beautiful evening with an outing. We stayed later than we should as we enjoyed the night air, the musical stylings’ of a local musician and each other’s company. Perfect ending to a perfect day.
Tuesday, July 30, 2013
This week we said goodbye to a young woman Tori has worked with for a year. One more person who has come into her life made an impact and moved on. We will miss her. As I sat and thought about this change I started to cry – sob actually because it was reflective of so many who have come into our life, made an impact and to whom we have had to say goodbye.
Saying goodbye is not always a bad thing. Saying goodbye to our saviors in the PICU meant stability. Saying goodbye to our guardians on the 6th floor of Hasbro meant we were ready to rehab. And while at Franciscans, our transitions from floor to floor and staff to staff were indicative of our journey closer to home.
Once home, our team became staffed with different players. Thanks to Sargents, we traded the inpatient world of therapy for the outpatient. After 7 years with them and left to our own devices, we supplemented the conventional with the unconventional and even began adding Reiki, Reflexology, Music and Hippotherapy to the routine. And with every change came a new group of dedicated individuals ready to embrace the challenge, challenge their knowledge and embrace the girl.
Where would we be without those who give of themselves so freely? Yes, it is their chosen line of work. It is their profession – their livelihood. But we have been fortunate to experience those who do it with “life” and zest, a compassion that is rivaled only by their knowledge and skill.
Tori will lose a therapist and a friend. Our loss will certainly be another fortunate someone’s gain. After all, it is part of the circle of life if you would. It is meant for this young woman to move on and grow and forge her way, make her path, create her own life and legacy. Along the way there will be many Tori’s that she will touch and shape – much the same as those who have come before and will come after her.
And each and every one will play a part, have a hand, leave a mark on our path to recovery.
Wednesday, July 24, 2013
Every year my dad starts off his children and grandchildren with a garden. It is up to each of them to keep it going. Tori is no exception. As part of her therapy we use a raised container garden situated just so which enables her, using hand over hand techniques to water, weed and hopefully soon, harvest the fruits of her labor.
Friday, May 10, 2013
This week alone I have spoken directly with 3 families regarding rehabilitation facilities for brain injury. Unfortunately, their loved ones, with serious injury and facing long recoveries, have no options within our state. And so, once again families leave these familiar borders. Sadly, what those in the “industry” fail to realize is that once families leave for rehab and establish themselves within a system and within a nurturing environment outside of the confines of little Rhodie they are not likely to return to care within.
While there are many exciting things happening in the area of brain research in Rhode Island; Brown University holds a substantial purse, is making huge advancements in robotics and is collaborating with the VA – the general affected population cannot avail themselves of these services.
As an adult, Tori is fortunate to have a wonderful physiatrist and outpatient team at Vanderbilt Rehabilitation through Newport Hospital. As her mom and primary caregiver I provide and contract her day to day pt, ot and speech services. Her neurologic services are provided out of state because we do not have access to state of the art facilities and university level research in Rhode Island. We were told as much by the powers that be. It doesn’t mean it doesn’t exist – it just means it is not available in Rhode Island. So we went elsewhere to find it.
Soon we will travel to New York to be part of a major study regarding altered states of consciousness. We will be admitted to a hospital as part of a program delivered through a major university. It involves brain mapping and observation for Tori. I will also take part in a medical ethics study for family members. The portal for our entry into this program is our neurologist in Massachusetts. Had I not ventured outside of Rhode Island we would not have this opportunity. The phrase “If you build it they will come” for me transposes to” if I can find it we will go”.
Recovery is difficulty enough when tissue and tendons and neurons are ripped apart. It is even more so when families are ripped apart by distance.
Administrators from top notch facilities in our state continuously ask me for advice in reference to what families need and want. They also ask for my support in a physical, emotional and financial presence. I simply ask them to listen.
Wednesday, May 08, 2013
Ten years ago today we left the sanctity of Hasbro Childrens Hospital and with it the doctors and nurses we had come to rely on for survival. We also left the borders of Rhode Island and therefore, the comforting reach of family and friends. For the next eight months Brighton Massachusetts and bordering Watertown, but more specifically-Franciscan Childrens Hospital became our home.
With major surgeries completed, some rods and pins removed and bones on their way to mending the healing that remained required specific and intense Intervention. We were being moved to a Rehabilitation Hospital.
The selection process was grueling and limited at the same time. With no options in our state Massachusetts became the destination of choice. Because of limited therapies and less than optimal conditions in each of the pediatric facilities we tried to have Tori deemed an adult and to secure a Pediatric Waiver. In doing so we would guarantee a higher level of therapy each day and have access to state of the art facilities funded with government research dollars and deemed TBI Model institutions. Because the tragic Station Fire and its numerous victims also needed intensive rehabilitation, these world class facilities were bursting at the seams and we were denied.
Spaulding Childrens was located on the 7th floor of the Mass Eye and Ear Infirmary. The building rose up from the parking lot and was surrounded by a concrete jungle. Mismatched furniture and tired paint made it look a distant relative to the pristine facility where adults were treated. The association with its successful “big brother” and possible access to the same brilliant therapists and treatment plans made it appealing none the less. The multiple billables did not. In March I had no idea what this phrase meant. By May I was fully aware it meant one therapist to several patients each hour.
Franciscan Childrens was a former Catholic Hospital. The building blended into its surroundings. Only 3 stories high it did not loom over its neighbors. It was situated on a rectangular campus whose corners were guarded by statues of angels that rose some 12-15 feet in the air. It had picnic tables, green grass and an outdoor altar. It too had seen better days and the building seemed to show each ache, pain and gray hair and wrinkle as would an elder.
The deciding factor for me had been a visit to the Hasbro PICU by a former patient who had gone to Franciscan. His progress was truly a miracle and if Franciscan is where he got his…..
At the time of our arrival I wrote…”There is a powerful energy to this place. It lives in the spirit of the people who work here and in the hearts of the children who reside inside these walls”.
Although Franciscan did not deliver the miracle I had hoped for we were witness to many miraculous moments. And while it may not have been stocked with the latest state of the art equipment – it was equipped with many things just as important.
It came complete with a pair of security guards, a woman during the day and a gentleman at night that doubled as loving grandparents. They doled out advice, gave hugs and kept a watchful eye on your comings and goings.
The small and homey cafeteria was run by a frail looking woman who was truly anything but – on her watch you would be sure to get sufficient nourishment. Each day when the therapists broke for lunch I would walk with Tori to the cafeteria. Being new to maneuvering a wheelchair it was difficult to balance adequate food and beverage and still have a handle on Tori. Someone always seemed to notice because on many days after returning to our hospital room and putting Tori in bed to change and start her feed I would turn to find my tray “supplemented”.
Sadly along with all of the warm and wonderful came the daunting and disappointing and the bold and bureaucratic. Measurable modes of improvement and other insurance lingo gave precedence and less and less therapy was delivered each day. At one point we were in a rehabilitation hospital 24 hours a day receiving just 2 hours of therapy. Each day I fought for what I thought should have been a given and each day we were turned down. Instead, I began to request other services available to patients.
Technically Tori was eligible for 2-3 hours of Education each day. I felt for the young teacher who showed up the first day with algebra and history books. After drying her tears we came up with a plan. The next day she showed up with toys that showed pictures of animals and made the corresponding sounds. We found color flash cards and made our own science experiments using silly putty and shaving cream.
I requested a psychology visit for Tori. The doctor read excerpts from a Beverly Cleary book to her each session. In addition, we joined in on tie-dying class and baking cookies. Our days were full and the months on the calendar ticked by.
We took comfort in the grounds that surrounded the hospital. One day after a particularly devastating second opinion I took Tori to a spot where a statue of Mary was visible. We sat there for hours.
Finally, it was time to go home. Sadly it was not how I envisioned as I always assumed we would return when Tori was walking and talking again. Yet it was home and we would now return to the familiarity of family and friends.
It took quite some time to pack up all of our belongings we had accumulated over the 8 months in rehab. Once everything was packed the room looked barren and impersonal. The only trace of Tori that remained was the scent of “So Pink” a lotion I used to massage her each night.
Yes, tonight I reflect on a rehabilitation journey that began 10 years ago and continues to this day. And today, same as 10 years ago I close by saying Tori continues to work hard and continues to take steps towards recovery, one Baby Step at a time.
Tuesday, March 26, 2013
Over the last years I have marked this day in many ways. Always reflecting on the moments leading up to, the desperate moments of, and the heart wrenching moments after the crash. It has been spent seeking out our saviors and communicating with those so closely connected to those horrific and forever embedded moments. And while we are always moving forward in Tori's rehabilitation and looking ahead to the next opportunity for improvement, I realize I have kept my foot in the threshold to the past-not allowing the door to close.
Today marked a change and a new momentum. And it started of all places – in close proximity to a focal point of when it all began.
We had the opportunity to tour the Norman Prince Neurosciences Institute at Rhode Island Hospital today and with it, an extensive meeting with its Director, Dr. Rees Cosgrove. Sitting high above the streets of Providence and glancing out of the corner office windows I could see the expansive web of over and underpasses, bridges and highways as they intersect points north, south, east and west. The connectors if you would – all allowing us to reach our destinations. The next 30 minutes brought a renewed sense of being. It was as if all of my neurotransmitters were starting to fire.
Following our visit the rest of the day was spent just as it should. All of us together as a family. The past will always be a part of us. In the present we relish in the unconditional love of family and the wonderful support of friends, old and new. And the future, although still so uncertain – looks brighter.
“When you change the way you look at things, the things you look at change” – Wayne Dyer
3650 days, 10 years, – or, is this a new beginning?
We are at the dawn of discovery: the brink of developments. I for one needed to be recharged. There’s lots of work ahead…”’cause we ain’t done yet” – not by a long shot.
Monday, March 25, 2013
The Brain Injury Association of Rhode Island held their annual conference on Friday. I was truly honored and surprised to receive an award. So much so I fell out of my shoes on my way up to receive it. Typical Cathy move.
What’s not typical is the initiation into this club. I’ve been a member for just a day shy of 10 years now. Early on a wise man said to me in terms of giving back, “those who can should”. Long before that, however, a young girl simply lived by the code of Pay It Forward.
And so we do, whenever we can, in whatever way we can. Because on that day when my daughter was knocked out of her shoes, we were all thrown into the unknown. Life as we knew it changed. It changed in a moment. It changed forever. And while there were many things we did not know then and still do not know now, there were some things that were perfectly clear. We couldn’t do this alone and sadly there are many too many families who find themselves in this same scenario. We are all in this together. And so on behalf of all the members of this club and especially to a young woman with big brown eyes that challenge – we will continue to do more, to do better and to always pay it forward.
