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.
Wednesday, March 13, 2013
Rhode Island Hospital Campus was our venue of choice on Tuesday. We spent the day going from building to building, doctor to doctor. Tori had a very full schedule.
Along the way we ran into many past co-workers, friends, caregivers and continued well-wishers. People – who have never forgotten the little girl with the big brown eyes. Their genuine concern and delight in seeing the now grown and incredible “you’ve come a long way baby” young woman in front of them, palpable and touching.
And then, there in front of us visible through the corridor windows was the tree. The blossoming tree. Or, as I prefer to call it , – my miracle tree. A tree, that in the early PICU days became a symbol of hope and renewal.
I began to explain to Tori her connection to the tree. Moments before my daughter seemed distracted by the constant traffic of the hospital halls and yet when I motioned to the window and spoke of the blossoming buds as an analogy of her recovery she was focused and alert.
In two weeks, on March 26th, we will return to the campus and to the tree. This time I am certain the buds, which seem so ready to welcome spring will have begun to bloom. And just like 10 years ago, with Easter around the corner and the spirit of the season in the air, we wait for, we long for, we work for and we pray for the renewal and rebirth.
Friday, February 15, 2013
It was just Tori and I again today and as we went about our routines, tunes floating in the background, I thought about the supporting role music plays in our life.
Music reaches my daughter in a way other communication cannot. It reaches her very core and speaks to her on a different plane. She responds, she reacts, she communicates, she sings. Not quite the melodic tone of her youth but music to this mothers ears.
Music therapy provides pathways to new beginnings and meaningful interactions. It opens doors and it opens minds.
Tuesday, December 04, 2012
Coming into the MADD Candlelight Vigil this evening Tori was quite uncomfortable and extremely vocal. At several points I considered turning around. By the time we arrived she had calmed although still rigid and voicing displeasure. And then there were the faces of the people you have come to know and love-those with whom you have come to share a deep and everlasting bond. I believe all of the commotion; the hugs and conversations distracted her enough to allow time for relaxation to start taking place.
Once the ceremony started Tori settled. She was especially attentive to a beautiful lyrical dance performance and to those that sang. Families are asked to light a candle in honor of their loved one and then there is a presentation where name after name, face after face of those taken and forever altered are shown.
There is so much more to this than names and faces. For they belong to fathers, mothers, sisters and brothers, aunts, uncles, cousins, mentors and friends. They are our lifeline – they are our loves.
Watching Tori towards the end of the ceremony and seeing her so comfortable I wondered what could have corrected itself. And it hit me. Always, as the time for the vigil approaches I become uncomfortable and rigid-not quite knowing what to do with all of the emotion welling up inside. And, I retreat. Once I enter the venue and get to see and touch this “family” I settle. Tori is like a sponge. She soaks up the energy around her. I believe she felt my grief and reacted to it. I also believe that as emotional and draining the vigil is there is also an overwhelming sense of love. The love is shown through the connections with our loved ones, the kinship we feel for “other families” and the appreciation for life.
Two songs came into my life this week and they are so different – yet so similar, at least to me in what I believe they say. “Carry On” and “Stand”. We heard many times through the vigil – life goes on.. or, you need to “Carry On” and once doing that we need to take a “Stand”. To pull ourselves up, honor those we love, cherish life and for me personally, rise to the challenge of a pair of big brown eyes that beg to do more and do better so another family does not have to experience this same pain. Because, life as you know it can change in a moment.
Saturday, December 01, 2012
Friday, November 30th, something amazing happened. While Tori was at the horse farm for a therapy session a young volunteer asked if she could speak to me in private. Stepping aside she asked if I had every spoken at Cranston West High School. As I answered that yes I had, her eyes started to tear.
She proceeded to explain that 4 years ago she had been a student sitting in the middle of an auditorium during a pre prom presentation at which I told our story. She went on to say that she had only been at the horse farm for a short while but that a few sessions ago had seen Tori for the first time. About a week later in the middle of the night she woke up knowing exactly who Tori was and where she had seen her before. Immediately she called a friend. She told me that in the wee hours of the morning she told this friend that she had met the girl she was always talking about. The one she gave people examples of when they were making bad choices – the girl who made an impact and changed her life.
She is 21 years old now – a full time college student with a double major, two jobs and volunteer duties. She still tells Toris story. Through 2 sets of watery eyes we continued our conversation talking about life, choices and the what could have beens. Our tears dried and the corners of our mouths turned up as we spoke of shared sentiments and goals. Suddenly and without warning, I started to cry again because there before me… a little younger perhaps, taller certainly, but in spirit and in commitment I saw a wonderful glimpse of what would have been in terms of my daughter had it not been for the choice of one.
We never underestimate the damage one person, one choice can make. On Friday afternoon I was given a gift. The gift of knowing for certain, that ONE person can make a difference in a positive direction as well. Tori Lynn Andreozzi may not be remembered for her martial arts achievements anymore or for the fact she had a winning essay read at the State House or even she earned a place in the Junior Honor Society. Tori Lynn Andreozzi, who people once referred to as the little girl with the big red bow is now the “girl I am always talking about”, the girl who reminds you not to make bad choices and is the reason you call friends in the middle of the night.
Yesterday I received a priceless gift. And in true Tori spirit, whose favorite movie was Pay It Forward, make a difference in your own way. Take the time to be that ONE person.
Thursday, November 29, 2012
Thursday, November 29, 2012 for me was a remarkably unremarkable day. It started routinely enough. Revelry came at the usual time and there was the “changing of the guard” – or report if you would, as the CNA gave her comments on the night. Tori was in limbo – not quite awake yet not quite asleep and I sat quietly bedside keeping watch until the next caregiver arrived.
And that is where routine ended. Somewhere between leaving for a meeting and arriving at same the world changed. Not earth shattering changes, but ripple effect changes for sure. It was an emotional day – trying to be “present” and professional at this meeting and sitting side by side with a force of humanity – a woman who made such an impression in my life. A woman, who on November 7, 2007 presided over the first parole hearing for the offender who struck my daughter. All the while trying to stay composed I was listening to the most impressive man – a passionate leader who inspires. And, while gravitating from tears to hope, I was distracted by text messages of concern regarding my daughters physical presentation and her pulled g-tube! And…, it wouldn’t be enough for the roller coaster of emotion to end there…heck, it was only 9:45am. I then discovered that the kind officer who held the door for me was the same officer who filmed a mock dui crash I had participated in portraying the mother of a fatality victim several years earlier. It was by far the most raw and emotional experience I have ever had and by 11am I walked out of the Cranston Police Department with a DVD of the event.
Late morning and early afternoon were filled with a barrage of phone calls and a juggle of appointments mostly surrounding Tori and some current and pending issues which needed to be resolved medically. Frustration runs high when it comes to the struggles associated with trying to balance her schedule.
Then it was off to meet with another family and share some supplies and support and some laughs. By that time I was truly missing my little girl and was anxious to get home. Yes, Thursday, November 29, 2012 was a day of mixed emotions. But I may have been wrong about one thing. Looking back I think it was actually an unremarkably remarkable day. And for that I am thankful.
Sunday, November 25, 2012
I love Saturdays and Sundays. Yes, because of the obvious-it’s the weekend. But mostly because it means it is just mom and daughter time. I’ll admit – it’s a mixed bag of goods. On one hand it means no extra pair of hands to help with the lifting and turning, the grooming and dressing, the medicating and stretching, the nebulizing and vesting and whatever else might be on the menu for the day. On the other hand….it means the day, and the girl…are mine all mine.
And today until 5pm we used our time up just fine. First and foremost there were snuggles and Lifetime movies. After our fill of those we moved on to our ADL chores accompanied by the silky sounds of girl anthems. Tori endured mom belting out song after song by Carole King, Carly Simon, Pat Benatar, and Pink to name a few. I’m still not sure if her giggles were squeals of delight or “you’ve got to be kidding me’s”.
Once Tori and her room were tidy we moved on to my room and she kept me company while I changed the bed and threw open the windows. Then, we sat in front of them and watched and listened to the water. After, she assisted with a little online Christmas shopping and we viewed some family pictures on the computer.
Around 3pm we decided it was time for a change of scenery and getting into the van went for a ride around the neighborhood. With the rebuilding being done in our town it is not possible to visit our usual haunts and we selected a new route. I love taking Tori for a ride. When I open the passenger window just enough for her to feel the wind on her face she cocks her head slightly back and seems to relax into the breeze. It was a perfect day.
I love Saturdays and Sundays and I am thankful for our mom and daughter time.
Tuesday, October 23, 2012
Yesterday was a day filled with emotion. And those emotions ran from one end of the scale all the way to the other. It was a day that started and ended with conversations with moms dealing with similar circumstances; caring for young adult children whose lives where forever altered because of one moment in time.
Lives filled with incredible grief, pain and loss. Days filled with uncertainties and battles; not only from the injury within – but from the assault outside. The paperwork; the system; the wait. Adrift at sea at the mercy of the changing tides.
Such different circumstances – different stories. Yet, at the helm of each, guiding her ship with a steady hand, a mother. Determined to navigate through any storm and bring her precious cargo safely to home port. One mom fortunate to have a first mate, right hand, who shares her passion and vision for the journey. Both steadfast in their quest.
It was an emotional day. I cried and I laughed and mostly I was awed and inspired. And throughout the day I kept thinking what keeps someone going and yet I know the answer. It is the unconditional love, the bond that is never broken, that cord that is never truly cut. It is the beacon of light that guides you.
