Stories

Introduction

 
Ann D. is mother of Michelle D., a patient here at MHS.  This is Ann’s blog about Michelle’s and her experience at Massachusetts Hospital School.  To read previous entries of Ann’s blog click here. 

It Just Keeps Getting Better…

I’d spent the day at Children’s Hospital Boston with my Michelle.  Critical appointments all:  Pulmonary, Epilepsy, Dental.

She’s 12, beautiful, sweet, and brave.  And she needs me.

Thank God, ‘cause I sure need (and adore) her.

Michelle and I were accompanied by Anne Marie, her 1:1 aide at Massachusetts Hospital School for three years running now.  Couldn’t possibly do it without her.  Because of the tiring day, I’d planned to spend the night in the parent room of the Nelson Unit.  (It’s a long drive back, then the boat…I live on the Vineyard.  Heavenly, but…ugh.  Plus, it gave me a long-overdue opportunity to “connect.”)

Not particularly inclined to either get back in my car or pore over local delivery menus, I thought, “what in the heck am I going to do for dinner?”

Luck was with me.  It was “theme night” in MHS’ beautifully refurbished Morrison Hall, although in the absence of a holiday or otherwise notable occasion, the theme seemed to be simply celebrating a heavenly, warm September evening. 

Michelle was spent, in bed, being fussed over by her adoring nurses and respiratory therapists.   As I read to her and doted on her, what did I hear?  Is that Katy Perry?  Snoop Dog?  Lady Gaga?!

The school’s sound system for its very own radio station was in full array (and at nearly full blast) outside the doors of the hall.  How could anyone HELP but to venture over?  (Oh, yeah, mom, there is food galore, they told me.)

I walked to a place of pure joy.  Mayhem.  Comfort.  Inspiration. 

Living so far away, I don’t know many people at MHS (yet), so I mostly observed.

Camaraderie.  Kids in packs, kids with families, kids on their own, relaxed kids, sick kids, complicated kids, courageous kids, and kids having an absolute ball.

Staff.  With the kids.  With one another.  Lovingly.  Inside jokes.  Energy.  Affection.  Warmth.

Oh, yeah, I felt (and was) out of place a little bit.  But still. 

I dug it.

After an extremely satisfying meal of pulled turkey, sides, and dessert, I walked back out into the lovely evening, into a morass of wheelchairs.  Speakers were blasting, with…with… Michael Jackson!  And here’s this kid, an MHS student, with the glitter glove, the hat, the black patents…

…moonwalking, spinning, lipsynching with perfection.

The crowd roared its approval. 

And I’m, like, I must get Michelle out here! 

Just as she was finishing up a respiratory treatment, I got her out of bed and into her wheelchair (with able help, of course!) and took her to the gathering.

OK, I realize after a couple of songs, not quite for her.  I ‘read’ my girl.  VERY, VERY well.  Bored.  Yawn.

So we escaped, she and I.  In the balmy air, the clouds thin and low, only minimally hiding the glowing sun setting over the campus, we strolled away from the hall.  Ahead of us were three young men in their wheelchairs talking about--what’s that?—GIRLS?!  I could have been at just about any ol’ high school in Massachusetts.  We continued down to the barn to see the horses and hear the birds singing their evening melodies.  Just the two of us.  So nice.

Bed followed soon thereafter for we tired ladies. 

The next morning I arose to another lovely day, had coffee with Michelle’s case manager, chatted with her new teacher, the computer specialist (who’s worked magic with photos and videos I’ve sent him), her doctor, and nurses, then returned to Michelle’s room for a farewell visit.  Her portable DVD player was on, as was the TV suspended from the ceiling.  Neither she nor any of her four darling “roomies” were paying any particular attention to the ‘noise,’ so I turned both off and instead switched on some music from my iPhone.  The reaction … ah, so wonderful!  Smiles, clapping, and one of the cutest among these very cute girls playing air guitar. 

When departure time arrived, I hugged and kissed my darling goodbye, bid adieu to her buddies, and went on my way with a very happy heart.

I can’t imagine any mother who easily surrenders the care of her child.  I struggled with it for years.  But with every visit to MHS, increased is my comfort level that my Michelle is not only in the best of medical hands, and dearly loved, but she is in a place filed with, yes, challenge, but life, spirit, joy, energy and immeasurable giving by a devoted staff whose generosity and expertise seem unlimited.  And most amazing of all are the incredible, gutsy, and in many ways (that most, sadly, don’t see), NORMAL kids who populate her home away from home.

Each trip brings ever greater peace to me.  This one was memorable indeed. 

The Person Who Changed My LifeThursday, 30 June

Written by: Jeffery Mestre

I first met William* in the summer of 2006 at Massachusetts Hospital School (MHS) in Canton, Massachusetts.  I was there because my mother was an employee of their summer program. As she introduced me to the different handicapped children of her group, she introduced me to William and told me that he was12 years old, which was only one year younger than I was.  I said hello and he just looked at me. I noticed that William always remained still in his wheelchair, but I didn’t think much about him, and I had no idea how much he was going to affect my life.

Later that year I experienced my first true meeting with William. It was Christmas Eve and my mother asked me if I would mind spending part of my Christmas morning with William.   She informed me that William was one of the few kids who lived on campus 365 days a year. When William was 9 his enzyme deficiency caused him to lose the ability to walk and talk. His illness will eventually be terminal. William already has to eat by feeding tube into his stomach and he has to have daily lung treatments in a machine that helps remove mucus from the lungs. Unless he was having a medical treatment done he spent most of his time alone on his room, or parked in his chair in front nurses’ station. I told my mother that it sounded like a god idea to visit and we went to buy William a present.

When Christmas morning came, we drove to MHS and got there at 10 am. We were strangers to the nurses there, and they were a bit hesitant about letting us visit William. After they let us in, I walked into William’s room. The room was completely dark, and his mother was asleep on the couch. William was wide wake and when he saw us, his face of boredom turned into a smile. We took him out of his room and brought him into the playroom. I gave him my gifts, a DVD of “Toy Story” and a winter hat and gloves, and we unwrapped his other presents. We hung out the whole morning as we watched his new movies. Although William wasn’t able to thank me, his smiles throughout the morning showed me his appreciation.

After that day, I wanted to visit him more often because he seemed like the only student there who didn’t have anybody his age to spend time with him. His mother could only come to visit once a month. When I wanted to go back, the nurses’ said I had to become a volunteer. I did all the paperwork, the interview, and the training. ( . . . ) I brought video games. I help him play by putting the controller in his right hand. I sit on the right side and I put my hands around William’s on the controllers. His thumbs are too small so I use mine. He watches the screen and he gets tense and nervous when the game is close. When we win, his eyes open up wider and I know he’s excited.

Over the months, the nurses trusted me to take William for walks around campus in his wheelchair.  We would walk to the campus track, to get some fresh air. During the beginning of my junior year of high school, I began to volunteer after school Tuesday and Thursday to swim with William. Swimming helped William stretch his body, and provided him with some of the physical therapy that he was not receiving.

People sometime ask me how I talk to William since he is non-verbal. William’s eyes are what allow him to respond and I can see it in his eyes that he is listening. I found out that when responding to questions, William’s slow motions blinks mean, “yes”, and if he doesn’t blink, he means “no”. After discovering that, my conversation with William became a lot easier; I talked to him as if he was anyone else. One day I was reading a book (Arthur’s Pet Business) to William, and noticed that his eyes were following the words. So I started asking him if he could read. He blinked, and I asked him if he wanted to read on his own, he blinked again, so I put the book out in front of him and told him to blink when he wanted me to turn the page. It was truly an incredible experience for me, as I watched his eyes run through each sentence, and then watch as he turned his head slowly to look at the other page.

I started to visit William every other weekend; it then became holidays and every Saturday, and then it became every Saturday and Sunday and even vacations. My friendship with William grew every visit, to the point where I now view him as my brother.

William has become a big influence on how I now view life. Many people only think of themselves, they fight for things that aren’t truly necessary, and don’t think about what they already have. I used to be one of those people, until I met William, and saw how easy it can be to overlook things like having the ability to walk, eat and communicate. People always tell me that I’ve changed his life and that I’m a hero, but I think that he has given me more than I could ever give him. William has become my hero, and I will always cherish and remember the bond between us.

* I have changed my friend’s name to “William” to respect the privacy of his medical issues.