Stories
Introduction
The Miracle ContinuesThursday, 4 February
January 2010 - A mother's update
I learned something recently that just about knocked my socks off. The Massachusetts Hospital School (MHS), that “hidden gem of the Commonwealth,” my daughter’s “home away from home” for the last 16 months, has a waiting list of 55 families. Fifty-five.
For those of you who’ve read my journal entries, you know that I’m a single mom of two beautiful daughters, Michelle and Simone. And that Michelle, 11, is an angel who endures without complaint the medical complexities and significant physical impediments that have been a part of her young life since birth.
In June of 2008, I posted a journal entry called “A Life-Changing Day.” Therein I described the very powerful experience of my first tour of MHS. At the time, there were four openings at this amazing entity, and Michelle was able to begin there that fall.
So fast forward these many months, as I reflect on all that this miraculous new beginning has meant to Michelle . . . and to me . . . and to her little sister.
Imagine a sweet, lovely girl who can neither speak nor walk. She communicates joy and want with an animated face, dancing eyes, clapping hands, or arms reaching out to hug. She shows pain or discomfort with eyes and mouth wide and silent, or whimpers faintly if struggling with a seizure. Not once, ever, has she in any way, shape, or form expressed anger, or frustration, or meanspiritedness.
As complicated and far-reaching as Michelle’s needs have become—which is why I had to make a mother’s heart wrenching decision to surrender her role as full-time caregiver—the staff at MHS meets each and every one of those needs with an astounding blend of kindness, skill, humor, and expertise. Simply put, they adore her. Her school days are filled with music, books, exercise, state-of-the-art communication strategies, friendship, movement, and nonstop activity. Her dance card is filled each evening, too: horsebackriding therapy on Monday, aqua therapy on Wednesday, and sports events, movies, and a whole host of busi-ness in between.
Nurses, doctors, teachers, therapists and aides greet and tend to her as lovingly as if she were their own.
Instead of standing out as the only child in her school in a wheelchair, she’s among peers, peers—most in wheelchairs, too—who have become buddies, buddies who share their winning smiles and excited gestures, gestures animated by the loss of movement and control of other extremities. The awe I sensed at that first tour has not waned. It has grown, massively, as I’ve witnessed first-hand and in my daily communications how gifted is this extraordinary staff and how lovely this unique population.
And it doesn’t end there. My employers, who for years patiently tolerated long absences resulting from Michelle’s illnesses and hospital admissions, now have a reliable employee who can—and does—give it her all. As a single mom, that consistent income is more than a Godsend…it’s a necessity.
Then there’s Simone, Michelle’s healthy second-grade sis, who has Mom to get her to Brownies and playdates, or to share library time, baking cookies, and early, relaxed mornings getting ready for school—mornings that once were dominated by juggling meds, tube feedings, neb treatments, bathing and dressing, all before the bus arrived for them both. Each day seemed to become more rushed and stressful than the last. Bedtime’s different, too: now it finds me reading to Simone without dashing downstairs to give one more medication, change a diaper, check an oxygen saturation level, or respond (with trepidation) to a persistent cough. And Mom then actually enjoys a little downtime, instead of collapsing in an exhausted heap.
But, oh my, of course the notion of sending my own precious daughter to live elsewhere was at first painful, and scary, and, indeed, abhorrent in every way. As time-consuming and physically trying as Michelle’s care became, it defined me, and fulfilled me. (How could it not, with her stoic calm or smiles and squeals of affectionate delight as I administered to her?)
I learned about MHS as I began to face the inevitability of Michelle’s future. Gee, I thought (and had heard), I’d best start looking now, well in advance, for possible placements for Michelle, perhaps by the time she reaches her teens. But when I visited MHS, and learned there was a good chance she might be able to get in, I thought, why wait?
I thank God for that as I rise each morning, and retire each night, and often in between.
For if I’d waited, the miracle would be beyond our grasp.
And for what else am I thankful? That I was darned blessed to have moved to the Commonwealth of Massachusetts when I was pregnant with Michelle. Where else could we benefit so mightily from such exquisite care at no cost? Where Michelle could be transported to her own home every weekend at the expense of the local school system? Where else could she exist in an environment so incredible and so perfectly suited to her? And I positively shudder when I wonder how I could have steered her through recovery of the double hip surgery she is to undergo next month.
Yet the Commonwealth saves, too. Saves in countless “clinic” visits to Children’s Hospital Boston, where in the past I would take Michelle for everything under the sun, including wheelchair and brace adjustments—many can now be handled by the hospital staff; on Personal Care Attendant services—from 70 hours a week to 80 a month; on numerous hospital admissions—who-knows-how-many-of-which have been avoided because of the regular aggressive respiratory therapy she receives.
So I thank, my girls and I thank, the Commonwealth of Massachusetts and its citizens for making this dream, this continuing miracle, a reality. Sometimes our most excruciating choices really do work out in the end after all.
On Friday, October 30th, the Brayton School celebrated Halloween. The kids paraded around the building showing off their array of costumes before commencing in the costume contest sponsored by the School Store. There were eight categories of winners; creative: Amarylis, silliest: Brandon F., scariest- Efrane, original- Camren M., cutest- Kaitlin M., and Elia, best disguise- Ryan S., Camren S., and Alex H., most like popular person- Bobby J., and Matty L., and prettiest- Megan K., and Courtney.Happy HalloweenMonday, 16 November
Today I walked through the halls of a most amazing facility, the Massachusetts Hospital School. In the three hours I spent there, the possibility of it becoming my daughter's new home-away-from-home started to turn into what may very well be a reality. And I couldn't be more thrilled. Two years ago, one of her wonderful caregivers asked me, "Would you ever think about sending Michelle off-Island (from Martha's Vineyard) to live?" I BURST into tears. Are you kidding me? Send my precious, beautiful Michelle away to be cared for by someone else? Things evolved; Michelle's care grew more complicated. She's been hospitalized a lot and often needs oxygen overnight. She gets her first meds at 5 a.m., her last, 10 p.m. Weakened by daily seizures; she can't use her walker anymore. Getting her out of the bathtub becomes increasingly dangerous. I need to reposition her before I go to bed. I became a single mom. Her school now does everything they can to provide all her services, and then some. Not once have I had to gird for battle for her "IEP" (Individualized Education Plan) meetings. But she spends lots of time in the nurse's office, in the community room getting her therapies, and on walks through the halls or outdoors with her (incredible) one-on-one assistant, sleeping off the effects of a seizure in her wheelchair. The school's sole speech therapist also helps the kindergartner with a stammer. I had to ask myself: Is this inclusion? Does 'mainstreaming' really make sense for my Michelle? Can they, can I, challenge her enough? A month ago two of the gifted advocates who have helped us since Michelle was a baby told me about the Massachusetts Hospital School. Fast forward to today's tour, on which they accompanied me. My first impression upon entering the circa 1907 main building was "ooh, INSTITUTION..." You know, fluorescent lights, cinderblock walls, and that lovely nursing home aroma. I thought, no way. But that was just the 'clinic' facility for doctor visits. On to the school; wide open hallways, bright colors, not a step or door jamb in sight, huge vast entryways, windows, sunlight, and kids everywhere; ALL in wheelchairs or 'standers,' in front of computers, laughing, cooking, in class, learning, and all accompanied by what I could INSTANTLY see was astonishing array of gifted, lovely professionals. The library (with its rows of dolls in wheelchairs and walkers)! The music room! The Olympic-sized swimming pool with BUILT IN wheelchair ramps IN THE WATER! The computer room! The gym being decorated for a sports dinner! A handicap bowling alley! (I never even made it to the pond, or to the barn where the horseback riding therapy happens!) Every last person I met had an energy and a light inside that spoke volumes to what this facility has to offer. Reading like no other Michelle's expressions, eye gaze, and vocalizations, I've long felt guilty about not pursuing the augmentative communication options I know are available to her. (As my mom once blessedly said, "Oh, honey, you're busy keeping her alive!”) So when I was introduced to one of the school's five speech pathologists (all with Masters degrees), "talking" to a teen in his wheelchair with a communication board, that was the clincher. The hospital/dorm with round-the-clock nursing is equally bright and cheery. Two to three beds per room...one little guy's spot (no kids to be seen...they were all in school!) had Red Sox everything, but was also equipped with a feeding pump, suctioning machine, and oxygen. Once back in the admissions director's office, I pulled out my file of Michelle's medical history, med list, daily schedule, IEP, and patient release forms. Next step: Preadmission Evaluation. After that, I have little doubt, with four openings in the fall, she's IN. And the best part? The one without which I couldn't bear to do this? Michelle comes home every weekend, holiday, and school vacation, AND transportation is provided by our local school system -- door to door, including on the ferry from the mainland! And EVERYTHING -- the school, hospital, transportation, services, equipment -- is covered by the state. I won't pay a cent for this. UNBELIEVABLE!!!!! So here's to a dazzlingly bright future for my Michelle, for Mom, and for little sister Simone, whom I can finally drag to and from museums, tennis lessons, dance class, play dates; whatever her little heart desires! This spring three Massachusetts Hospital School students were recipients of the Cambridge Science Festival 2009 Curiosity Challenge award presented by The MIT Museum. The Cambridge Science Festival is unlike any other and prompts kindergarten to twelfth grade students to get involved with science, technology, engineering, and math by hosting a nine-day festival with activities such as lectures, debates, exhibitions, concerts, plays, and workshops. Brian C., Danielle D., and Kelly K. had their work published in the The Cambridge Science Festival book and were given awards by Jeffrey A. Hoffman, a veteran astronaut of five space flights and current MIT professor in a ceremony honoring their achievements. The students were asked what made them curious and how it got them into exploring their world through artwork and essays. Brian’s artwork and essay is called, “Im Curious About Robots,” which inquires about robots and if they are made for disabled children. Danielle’s artwork and essay was titled, “A Sticky Situation,” that questioned glue and how it becomes sticky. Kelly’s artwork is labeled, “Ten Years From Now,” which asks what she will be doing in 2019 and shows a picture of her entering and leaving MHS. Theses students have been called the scientist of the fu A Life-Changing DaySaturday, 1 August
A mother’s perspective
Cambridge Science FestivalThursday, 2 July
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