In short order we moved to a 27-room mansion overlooking the ocean in
Ipswich
(John Updike's town). Andrea and I ran a lodging facility for Project
Adventure,
an Outward-Bound kind of operation. While this sounds kind of
intriguing,
it really just involved cooking and cleaning for up to 30 people a
week.
It was, however, a great place for James. He got to meet and play with
a vast number of different people. Since most of our guests were
teachers
and parents, they would sweep into the kitchen and whisk away this
five-month
old kid to fling around in the cavernous living room. James never did
develop
any stranger anxiety, and still loves people of all kinds.
In the midst of all this barely controlled chaos, James' care provider talked to us about his missing some developmental milestones. We had been thinking the same thing, but she spurred us to get to the doctor. He said "Let's wait and see what happens." There is a deep lesson here for both caregivers (you DO know what you're doing sometimes!) and for doctors (you DON'T sometimes!) Eventually we ended up at Tufts Floating Hospital, which once was a boat, but now is brick. Through an excruciating series of tests and endless anxious days we learned that James had a vague kind of developmental delay.
Both physical and occupational therapy began, as did our continuing journey to find out what was going on with our child and how to best deal with "it". Life continued, and we did our best to keep James happy, which was easy because of his great disposition. James got to graduate with da, which was a bigger thrill for me than him. As the cooking and cleaning grew tedious, we sought a way to move on, which appeared as a job offer for Andrea here in Vermont.
That was eight years ago, and was actually the impetus for our becoming a lot more knowledgeable about James and his needs. Dr. Mary Scollins, patron saint for special children in Vermont, ferreted out language in a report which indicated not simply developmental delay, but Pelizaeus-Merzbacher Disease, something we have involuntarily learned to pronounce. This is an infinitesimally rare form of leukodystrophy, a family of rare diseases which primarily affect white matter myelination in the brain. Since then we have become virtual experts in a very limited range of both genetics and neurology.
Dr. Scollins (and everyone at CSHN) moved to support our family instantly. We were directed to Parent to Parent, which has evolved into a long and wonderful association; and we were guided to the Katie Beckett program of Vermont Medicaid, which has yielded some important results for James and our family, though the process was not always wonderful.
Another result of our visits to CSHN was to be sent to Dr. Edwin Kolodny at New York University. Dr. Kolodny had actually worked with PMD kids in the past. He spent an entire day with us, and James was the neurology staffing subject for the day.
Dr. Kolodny confirmed the diagnosis of PMD and settled us on our current path. In the kind of candor we have come to expect and value, despite the pain, he told us that if we cared for James and engaged him in life, he would prosper; if we did not, we would lose him. This has been a far more reasonable and rewarding task than we imagined that grim day. James has made it so by his wonderful personality and his own inner tenacity. We have gained strength and courage from him.
Since that time, we have weathered MRI's, a monster hip rebuild at Shriner's in Springfield, MA (a whole tale in itself), battles with Medicaid, training three pediatricians and numerous school personnel, a new accessible bathroom (thanks to Plageman, Kirby, Gagnon and Daughters), the kindness and generosity of neighbors and townspeople in Milton, the sheer poopheadedness of people who just don't get it, and the warmth, friendship, and understanding of those of you whom we have met through Parent to Parent.
Our journey has continued with the birth of James' sister Allison last April. She has added a whole new dimension of amiable chaos to life. She never fails to bring a smile to her big brother, even when she pounds on him. James has shown her a few tricks, but he has also developed a sense of concern and responsibility. So, we keep on fighting the good fight, enjoying most of it, and dealing with the rest with the knowledge that we will do whatever it takes for our kids. ©