Another Anniversary

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Another Anniversary

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.

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