Tag Archives: Christmas

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2020 A Year of COVID 19 and Social Distance

As bad as 2020 has been for us as a population, I wanted a way to remember how we as a family fared. I figure a decade from now when all of this is either the beginning of situation normal or a distant memory, I will want to be able to look back at 2020.

So here are a few of the photos of this past year to show what it was like for our family.

Our year started off great. We even had our nu.
The year quickly seemed headed for nowhere on March when we began social isolation and distance learning.
O’s computer sitting on his great-grandmother’s desk.
Distance learning was a new, serious challenge for our family of 4 special needs children.
Our family walked daily.
We found lots of interesting things on our walks, like this abandoned car from the 1950’s.
It was a pleasant surprise to find so many wooded walks near us. So we walked….
And just kept walking as we discovered more interesting hikes near us.
Wildlife ran rampant in the neighborhood.
All of the walking and sharing in,my wife’s exercise routines lead to my 4,5,6 challenge. My hope is to add a year pf productivity by being healthier in exchange for the year lost to COVID 19.
After a few months of social distancing, we did a formal dinner where we all dressed up.
We had fun playing blind twister with textured circles and blindfold to level the playing field for K.
Fireworks were visible from the comfort of our neighborhood again. They were a tradition that survived the virus unscathed.
We still dressed for Halloween and our yearly photo at our neighbor’s house.
When we could not do some of out normal traditions, J stepped in to keep things fun with Halloween themed foods like Mummy Dogs.
As Christmas rolled around, we headed out to look at the lights. This house has been invited to participate in Christmas Lights War next year.
There is nothing like a singing pooping flamingo to get belly laughs from the family.
What’s Christmas without a constantly squeaking pogo stick?
The rainbow signaled the end of bad times in biblical times. May this one signal the coming of better days once again as we head into 2021.
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miracle, New Years, New Years Wish, Uncategorized

Christmas Miracles Not Always A Norman Rockwell Painting

A snuck down to look at Christmas gifts under the tree.
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.
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.
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.
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.

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