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.
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.
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.
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.
