It was the Tuesday before Christmas, and we were thrilled. Our Christmas miracle arrived, and it smelled disgustingly wonderful. A finally pooped for the first time in 4 days. As we deal with A’s slow motility, we were thrilled we could plan on spending our first Christmas in our new house.
As I it here on New Years Eve, I am happy to say we will all be able to spend our first New Year’s day in our house as a complete family thanks to A getting out of the hospital this afternoon. I have to confess to a large amount of concern. After three days in the hospital, she was discharged with the pronouncement of everything that could be done having been done. There is still a large part of me that looks at this like a cancer diagnosis. She has been discharged with a mass inside her likely to grow and inhibit parts of her body’s “normal” functioning more as the mass (of shit) grows inside her. Her body can’t expel it at the rate it grows within her. Our hope is a return to a very broken down formula through her g-tube will allow her body to catch up and turn the tide.
So she is home with us, but her miracle is a family life without food outside of gum not to be swallowed and lollypops. Our miracle is to be diarrhea every day for at least the next month while her body heals. Our miracle is the resilience of spirit she shows as she happily submits to treatments (that I fear) because J promised she could earn a pillow pet for each of her siblings by being brave. The first night of “go lightly” earned one for her, and the subsequent nights she got one for her brother and sister. What a miracle is the bravery born of love with a nature of giving.
My favorite memories of the 2014 start with taking the family to Jamaica in January. Going to the FDR in Jamaica was an awesome experience for our family with our wonderful nannies, good food, and a time for J and I to reconnect.
On a personal honors and opportunities front, I was lucky enough this past year to serve on two teams hoping to improve medical care in the US. The first was with Patients Like Me as they try to better gather information from patients to help patients better track what is happening. The ultimate goal is to shorten the time between findings in a lab and release of new medical products into the market place.
The second opportunity came when I was invited to serve on the American Board of Internal Medicine as a patient advocate. I would be hard pressed to express how impressed I am with the members serving on their board and the process they use to create their certification requirements. I feel like serving on both groups has drastically increased my appreciation for modern medicine and its potential going forward.
All in all it has been a great year even if stressful. My New Year’s wish is that all of my family and friends live well in 2015, whether in health or illness.