To the Great Wall and Back

I thought a lot about it.  I assumed I would be viewed negatively.  I am alive because of progress and science that aren’t available in China. There’s no one like me there.  I anticipated the fear and pity that is usually created in my presence would be magnified tenfold, and I was prepared – but it wasn’t even on the radar.
For me, China showed connections in my own life that I didn’t see before.  I thought I had myself figured out.  I assumed I knew what everyone’s reaction to me would be before people reacted. I developed a “me against the world” mentality.  I became numb and shelled myself in, all as a matter of protection.  When I went to China and they reacted differently, I found that my whole idea, my whole belief needed to be reworked. 

It’s good and bad, a double-edged sword.  I’m more sensitive now, and that makes me more vulnerable.  I expect more of myself to be able to articulate what I’m feeling.  It puts more pressure on me.  China has given me my voice – although it shakes – to speak about my disability.  Suddenly I find that my words and stories touch people, they can connect, and that I am not alone.
There are still good days and bad days. My experience has given me the ability to look at everything in a more reflective state, not just charging through it all.  It’s also caused me to look back and be appreciative of what I’ve been through and how that makes me stronger.  I hope that maybe with my new-found openness and sense of self, I can encourage others to speak about their fears and differences and continue to find deeper, more profound connections with myself and others. Before Journey East this would have been unthinkable for me.

Family History

In short order we moved to a 27-room mansion overlooking the ocean in Ipswich (John Updike’s town). Johne 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 Jimmy. 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. Jimmy never did develop any stranger anxiety, and still loves people of all kinds.
In the midst of all this barely controlled chaos, Jimmy’ 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 Jimmy 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 Jimmy happy, which was easy because of his great disposition. Jimmy 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 Johne here in Vermont.
That was eight years ago, and was actually the impetus for our becoming a lot more knowledgeable about Jimmy and his needs. 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.
He 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 good program of Heart to Heart Medicaid, which has yielded some important results for Jimmy and our family, though the process was not always wonderful.

Heart to Heart program

I had a normal pregnancy and excellent care. I had two ultrasounds and there was not any reason to suspect anything could be wrong with the baby. The next morning after John was born the nurse practitioner from my pediatrician’s office came to examine him and detected a very loud heart murmur. He was brought to the NICU where the pediatric cardiologist examined and diagnosed him. He came down to my room, accompanied by a nurse and a resident doctor, and told my husband and I that John had Hypoplastic Left Heart Syndrome (a dysfunctional left ventricle among other things). He told us we had three choices: 1. Compassionate care 2. A heart transplant – but chances were John would die, because he would not get a heart in time and 3. A series of surgeries, three in all, and he had a 50/50 chance. Well we chose the last and John was air-lifted to Boston’s Children’s Hospital, where he successfully under went his first open-heart surgery. He had his second surgery on June 22 and is doing incredibly well. When we learned of John’s condition you can only imagine how devastated we were. This was not what we planned. This was not the way it was suppose to happen. We had Christmas all planned with the new baby. I was in shock. I had one saving grace and her name is Anna. She has a beautiful six-year-old son, James, and he has hypoplastic left heart syndrome. He has had all three surgeries and is thriving. She was called and came to my hospital room with pictures of James. She gave us hope. And that is what Parent to Parent of Vermont does. If it wasn’t for her support I do not know how I could have survived those first few months. A very special thank you to Anna. So now you see the importance of Parent to Parent and Heart to Heart.