Whenever I think about what I want my family to get out of vacation, I keep coming back to two things. I want us to all get a break from our routine, and I want us to gain experiences to allow us to imagine life outside of the ruts into which we routinely fall. I want inspiration for imagination.
I will grant sometimes the inspiration leads to moments of priceless humor which in no way lessens the value of inspiration in my eyes. After a few days on our recent trip to Jamaica spent hunting for hermit crabs along the beach and under the peers, my son earnestly threatened J saying “If you don’t let me, I will make this hermit crab pinch your booby.” My wife and I looked at each other shocked and then burst out laughing. All of the seriousness in the situation was completely lost as all five of us laughed on the beach.
Yet again, our family enjoyed the sun, the beach, Michelle and Carmelina and all of the other guests at the FDR in Jamaica. J describes our yearly visits as the vacation we take so we can stay a family because otherwise we would go insane. I’ll post pictures when I can, but it maybe a while.
A snuck down to look at Christmas gifts under the tree.
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.
I know who this is without even looking.
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.
A’s favorite gift was a camera.
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.
O is convinced he wants to be a Munchkin. Don’t tell him he has been short all his life and thought of as Munchkin like in his enthusiasm. Just need him to start singing about yellow brick roads and the image will be complete.
