The year ahead

When I think about 2009, my mouth goes dry and my heart starts to race in a sort of post traumatic stress syndrome kind of way. It was, without a doubt, the worst year of my life to date.
It actually started in 2008 when my husband began to suddenly suffer from migraines. We wrote it off as stress as first. We were living in a new city, far from our hometown with three kids under five. S was working 70 hour weeks at his new job while I attempted to form a new life as at a stay at home mom in a new place.
In early 2009, I began to pester S to see his doctor about what seemed to be a sinus infection. But even with strong antibiotics the sinus infection continued to grow worse, leading to vertigo so severe he couldn't stand up without falling. The doctor called it "benign position vertigo" and ordered an MRI to check for deposits in his ear canal and a visit with a neurologist.
One morning, before we had could even schedule either of those visits, I heard a loud thump in the kitchen and found my husband on the floor. His eyes were rolling back in his head, his body convulsing, and he was completely unaware of my presence. This would be the start of an adrenaline fueled maze through emergency room visits, tests of every kind imaginable, fifteen different neurologists, a week in one of the top hospitals in the country, three endocronologists, five cardiologists, an MS specialist and finally a diagnosis of a rare genetic disorder studied by only a handful of doctors in the world for only the last fifteen years.
On top of doctor visits, prescriptions, tests, ER visits, and jargon I could barely understand, I had to continue raising my kids while living a day's drive away from family and friends. I had to continue to get my daughter to school on time, supervise homework, make sure everyone ate regularly, keep up on the laundry, and manage our dwindling finances while battling insurance companies and keeping family and friends up to date.
While watching my husband fade away, I had to learn how to demand attention and respect from doctors and nurses. I had to learn how to be loud and forceful, had to learn that for every good doctor, there are fifteen arrogant know-it-alls ready to dismiss you without even reading your patient history. I had to deal with people I loved and trusted saying hurtful things or disappearing completely.
In September, our savings gone and still without a diagnosis, we had to pack up our kids and move into my in-laws' home defeated and exhausted. In November, we met with a world renowned doctor who handed us the diagnosis with such gentleness and kindness that it wasn't until we left his office that we realized that he was not able to give us the one thing we still needed--hope. This diagnosis is not the earth shattering kind like cancer or a brain tumor but it has completely changed our lives. We do not know what our future holds, there are no studies or tests, only experimental medications and questions.
This space is where I hope to write about the next phase, the place where we try to carve out a new future from the wreckage. Where I will write about joining the teenagers and twenty somethings on campus as a full time student pursuing a degree that will let me support my family eventually. Where I will write out the ways in which we are changed. And where, hopefully, I can find some funny and bright moments to light the way.