Saturday, December 14, 2019

Saturday, December 14, 2019

Tonight's picture was taken in December of 2003. Mattie was one and half years old. It was Mattie's second trip to California, but his first Christmas in Los Angeles. It was a big deal for my family and Mattie even got his own little tree. He had a great time and spent a lot of time outside in the backyard. 


Quote of the day: The people of Gander were just phenomenal. I can’t say enough nice things about them. They brought smoking patches to the airplane. They brought diapers of every size. They brought baby formula. They filled 2,000 prescriptions in the middle of the night. When we got off, they had tables and tables set up. The people of Gander had cooked all night long. They made all kinds of sandwiches. They gave us a bag. It was kind of like Halloween. You went from table to table and just picked up what you want. They had fruit and brownies and pies and cakes — they had made everything. There were 6,565 passengers and crew that showed up within a three-hour period. They were fed three hot meals a day, every day we were there. ~ American Airlines pilot Beverley Bass 

Peter sent me this photo today of the physical therapy room at Spaulding Rehabilitation Hospital. It is extraordinary! Bright, open, amazing views, and access to incredible staff and equipment. I can see why this facility is always ranked as the best in Boston. 

This is a photo of Peter's mom with her physical therapist, Katie. Having the right therapist can make all the difference in the world. Apparently these two are a good match!

Katie got Barbara going up and down steps today!

Barbara at the top waving to Peter!

This is what Barbara's back looks like now. Keep in mind when she was brought to the emergency room on December 1, the following was identified:

1. A Third Degree Heart Block, requiring a pacemaker (though a defibrillator was used twice on her heart  - it delivers a dose of electric current to the heart)
2. Brain Bleed
3. 3 inch laceration of her head
4. 4 broken ribs
5. Fractured vertebrae (t4-8)

In all reality Barbara is lucky to be alive, as one of her vertebrae came 1cm away from severing her spinal chord. 

Today I had the opportunity to see the matinee performance of Come From Away at the Kennedy Center. I can't say this is a musical that you are going to come away with singing the score. But this is a musical that highlights the human spirit of compassion, hope, and kindness even as we face our darkest hour. 

This was the set to the musical! It never changed and yet the acting was so good, that through their words and actions, they transported us to different scenes.... on a airplane, in a shelter, at a bar, etc. 

This is the first musical I have seen without an intermission. I can see why they don't provide one. It would break up the nature of the story and complexity of emotions being explored. 

Needless to say, I saw no one moving or talking throughout the performance. In fact, when they sung their last song, the entire audience jumped to their feet and gave them a standing ovation. Once the actors left the stage, the on-stage musicians continued playing and the audience was memorized and clapping along. NO ONE was running for the doors. A real Washington, DC first. In a town where people seem to think they are a priority and their schedule is tantamount. But here is what truly caught my attention. Once the performance was over, every one was KIND about exiting the theater. People waited, let other people in front of them, and there was a sheer energy of human kindness in the air. Honestly if one took a poll of moods leaving this performance, I am quite sure it would noteworthy. 

Come from Away is a musical that depicts how the town of Gander in New Foundland was transformed by September 11, 2001, and how the "plane people" acclimated to their hosts and the tragedy of 9/11. In total, 255 planes were diverted to several towns across Canada on September 11, 2001, with 38 of those diverted to Gander. Gander airport is one of Canada's biggest airports (despite being a town of just under 10,000 people) and when it first opened in 1938, it was the largest airport in the world. Ironically, Gander was a thriving military post during World War II, and for years was used as a refueling point for transatlantic aircrafts unable to make it across the ocean. Until 9/11, the very high-powered jumbo jets that landed there that day virtually put Gander out of business, since their tanks were big enough to make the trip without stopping.


This is what Gander looked like on September 12, 2001. 
Because there was a security threat, once the planes had landed, the people on them had to stay put for a further day on the runway. In the days before social media and smart phones, they had no way of knowing what was going on. Once they were allowed off, they could only take their hand luggage with them. There's a song in the musical called "28 Hours" which references how long people were stuck in the planes.

There weren't just people on those planes – there were animals in the plane holds too. The character of Bonnie in the show is based on the real life of head of Gander area SPCA. She managed to get into the cargo holds of the planes to search for any animals. She found 11 dogs, nine cats and a pair of rare Bonobo apes and set up a makeshift vets in one of the empty aircraft hangars.

This is a photo of "Gander." The chimp's mother, Unga, spent six days at Gander during 9-11 and now her offspring bears the town's namesake.

Perfect strangers were invited into people’s homes – where meals, beds, and new clothes awaited them. Striking school bus drivers put down their picket signs and volunteered to transport people from their planes. Schools were converted into makeshift shelters. Restaurants and bakeries donated food, while pharmacies provided everything from diapers to medication to feminine products. Group cookouts were planned. Phone and computer centers were set up. Walmart cashiers invited perfect strangers home for warm showers.

One group of terminally ill children flying (9/11/01)  
from London to Disney World in Florida for their birthdays were treated to the next best thing, when a police officer Oswald Fudge’s daughter and her teenage friends created a pop-up Orlando at St. Paul’s Intermediate School — complete with local entertainment and sweet treats. A bakery made a cake for 350 people, and we had balloons and stuffed animals. One of the fathers said, "My daughter’s wish was to go to Disney World, but even if we don’t get there, it’s okay. We’ve had such a good time here, she’s not sad."

This is what the Gander airport looked like on September 16, 2001. Planes lining up to take off. I honestly can't imagine how the "plane people" (which is how the people of Gander referred to those aboard the 9/11 planes who landed in their country) felt being grounded in a foreign land when terrorist attacks were happening in the USA. The musical does an incredible job in less than two hours covering every emotion under the sun from fear, loss, anger, grief, isolation, anxiety, hope, connecting, trust, and kindness. For those five days, Gander became like the United Nations, as it wasn't only hosting Americans, but people from all off the world who were on planes grounded in Gander. 

Despite the tragedy, good things blossomed out of the time spent in Canada. British Nick and American Diane were on the same plane, but only met when they were off their plane and in Gander. After spending time together in the town, the two got along famously and eventually married – heading back to Newfoundland for their honeymoon. This is a photo of the couple on the 10th anniversary of 9/11. Many of the "plane people" journey back to Gander in honor of 9/11 each year, as the connections they made with the islanders during those 5 days will never be forgotten. In fact, the "plane people," on the day they departed left thank you notes and money in the airport suggestion box. We were told that when all foreign currency was exchanged and accounted for, it equated to a $60,000 gift.  

Video narrated by Tom Brokaw: 9/11: Operation Yellow Ribbon

Friday, December 13, 2019

Friday, December 13, 2019

I will never forget this day.....December 5, 2002. Mattie was 8 months old and that day, it began to snow. It inspired me. I dressed Mattie up in his Santa suit and plopped him in his entertainment saucer and out on the deck we all went. I can't tell you how many photos we snapped that day trying to capture the perfect FIRST Mattie photo for our Christmas cards. This was not the photo I ultimately selected but nonetheless I think it is a cutie. 


Quote of the day: Fatigue makes cowards of us all. ~ Vince Lombardi


I remember when Mattie was in the hospital, I thought to myself.... wow I miss the mundane, the everyday tasks! How I longed to be able to just do the regular things people do on any given day. Even chores like... grocery shopping, laundry, and vacuuming. Though I may complain now of being tired or sick of doing chores, I always have the context of life with cancer in the back of my mind. I remember all too well what it felt like living with intense stress, making life and death decisions, and having NO freedom or control over my own daily existence. 

However, today I had a six hour long licensure board meeting, four Sunny walks, and a bundle of other chores. The chores are getting to me and wearing me down. The meeting left me with a migraine and an eye that is twitching. A delightful feeling. Which means I need less computer time and more rest. So I am signing off for today. May tomorrow be a better day. 

Thursday, December 12, 2019

Thursday, December 12, 2019

Tonight's picture was taken on December 27, 2008. We took Mattie to the light show at the National Zoo. It was a first for all of us. Pictured with Mattie were his cousins, who were visiting from Boston, and several friends from preschool. 



Quote of the day: There can't be a crisis next week. My schedule is already full. ~ Henry Kissinger

Peter's mom is up and actively taking part in physical therapy. Her therapy schedule sounds like she is in boot camp!

Keep in mind that she had a pacemaker inserted on December 2 and then had 
t4-8 spinal fusion surgery on December 6. Now in less that one week she is up, walking around, and climbing steps.

She is scheduled to be sent home on December 23. She will receive nursing care, and occupational and physical therapy at home. Meanwhile we are securing other services like snow removal and house keeping in order to make her transition home possible.  

I had a full day planned of Foundation work and chores. However, while walking Sunny this morning, I noticed the color of his urine. He looked a deep orange, as if blood was being passed. Needless to say, I freaked out. When I am tired, like I am now, I can go from calm to panic in two seconds. While walking Sunny, I called his vet, who of course wanted to see him.

So I scrambled to get Sunny to the vet. Poor thing did not know what hit him, as he got catheterized and examined. The samples the vet took looked fine. So in addition to a urine analysis, he is also culturing the sample. I have been asked to catch Sunny's urine too and bring it back to the vet. This should entertaining, running around after Sunny with a specimen collection pan!

Later in the afternoon, I visited Mattie's school. As I wanted to make sure Mattie's memorial trees were decorated for Christmas. Given all the struggles we have had with Mattie's memorial tree, it is ironic that we now have THREE live memorial trees. Which is remarkable because we were sure that the trees were dying at one time. This is why the school continued to plant a new tree. My joke is Mattie has a grove, not just one tree. I put ribbons on all three trees and decorate two of them (mainly because they stand right next to each other).

This is the official memorial tree with the dedication plaque. The tree has butterflies, gold ornaments, and cupcake ornaments. 

This is the second tree. It is located right next to the one pictured above. I decorated it for Christmas and kept the donut ornaments on the tree. These were in honor of of Mattie's birthday in April. I love seeing the donuts blowing around in the wind. 

You see the two trees are side by side. They are on either side of the green bench. While I was cleaning up and decorating the trees, several kids were playing on the school's playground. Mind you it was freezing out. 

One mom drove her car up to where I was, got out and went into the school building. The next thing I knew she came out with three children in tow. Clearly she was in a hurry as the kids couldn't keep up with her pace. She told them she did not park her car in a parking space, but instead just pulled over. Her son, who was very young, said to her.... God sees everything we do. Basically he was asking her about God and what he'd think of her parking (or lack there of) decision. As she was not in a parking space and was actually parked in a way that could block traffic. In all reality, her son's question was very sensitive and he was trying to understand a difficult concept... the notion of God and how God view's our actions and behaviors. Honestly it was a very teachable moment, because her child initiated the topic and was interested in hearing a response to his question. He never got one. Instead, he got a lot of yelling, and was told to get into the car. I was listening to all of this and was actually ready to yell at her. How is it that I don't have a son anymore..... just a memorial tree, and yet this mom has three children and isn't paying attention to any of them!!! It just set me off.  

Let me introduce you to "Charlie Brown." This is what I call this tree. It was the second memorial tree planted in Mattie's honor. This tree never did well, but it is still hanging in there. I affectionately call it Charlie, because it reminds of the pathetic little tree in the Charlie Brown Christmas Special. Any case, even Charlie got a Christmas bow. 

Wednesday, December 11, 2019

Wednesday, December 11, 2019

Tonight's picture was taken in December of 2008. Typically I feature a Mattie photo. This instead was a Mattie creation in the middle of our living room. Though we did not set up a big Christmas tree that year (because we were rarely home), Mattie decided to decorate in his own way. The Christmas Train was a Mattie tradition that went around every one of our family Christmas trees.  


Quote of the day: Sooner or later comes a crisis in our affairs, and how we meet it determines our future happiness and success. Since the beginning of time, every form of life has been called upon to meet such crisis. ~ Robert Collier

Peter's morning started with this dot on the elevator of the Acute Rehab Facility. What is it? A penny! We took it as a Mattie sign. 

Peter got his mom into Spaulding Rehab Hospital. It is the number one rehab hospital in the Boston area and it is the official teaching hospital for Harvard Medical School’s Department of Physical Medicine. 

Check out this view from Barbara's hospital room! Very different from Mattie's views. I remember one room Mattie was in faced a brick wall! A dark and depressing two by four of a room. 

Peter sent me this x-ray! You can see the rods and screws inside of Barbara. Not to mention the pacemaker they inserted LAST Monday. A lot can happen in a week! I remember this so vividly with Mattie. In his case, a lot could happen within minutes! 

Barbara was visited by two friends today. But from what I understand, Barbara is freely walking and standing up and sitting down without issues. Honestly I think the neurosurgeon has to be a miracle worker. 

But at the end of the day, I credit Peter. He really pushed the hospital to get his mom scheduled for surgery. We felt the sooner she was stabilized and able to return to movement the better her recovery would be. 

Barbara's night view from her room, with the Zakim Bunker Hill Memorial Bridge in the background. 

Tuesday, December 10, 2019

Tuesday, December 10, 2019 -- Mattie died 532 weeks ago today. 

Tonight's picture was taken on December 24, 2008. It was Christmas Eve and Mattie got a visit from one of his favorite characters, Scooby Doo. This visit brought a smile to Mattie's face. But the happiness was fleeting for Mattie. Mattie was later discharged and was able to go home to celebrate Christmas. I am sure hospitals think this is what every family wants and for the most part they are probably right. Except when it came to us! Time away from the hospital was down right difficult as it was hard to manage Mattie's pain and medical needs at home. In addition, at home there was no else around to help us and both the physical and mental health challenges that we balanced on a daily basis. I remember that Christmas at home, and it was memorable, but not in a good way as this was when medical traumatic stress symptoms began to pop up for Mattie. 


Quote of the day: The ethic of conviction and the ethic of responsibility are not opposites. They are complementary to one another. ~ Max Weber

Peter has been working very hard to get his mom out of the hospital and into rehab. In a way trying to accomplish this is like directing an orchestra. As it requires both the hospital to finish all assessments and diagnostics to release her and then there has to also be a place to take her. Which sounds easier than it is. It isn't easy to find an available bed in an outstanding rehab facility. But the stars and planets aligned today. For six hours, Peter worked the problem and now as I type this, his mom is getting transported to rehab. 

Peter has done an outstanding job advocating for his mom since December 2. If it weren't for him, who knows when she would have gotten the surgery or been discharged and heading to rehab. I know the stress Peter is managing all too well but in addition to dealing with the sheer magnitude of the crisis, he is also balancing family dynamics. 

It is hard when you see the reality of your parent's physical and mental health challenges, but your sibling doesn't agree with you. The tension that can erupt is enormous and frankly it would be easier to walk away from this stress or just give in. But giving in has consequences on the health and well being of one's parent.

Meanwhile I am keeping things going in DC. I typically do two walks with Sunny a day, but with Peter gone, I am doing my walks and Peter's..... 4 total. So I feel like I am always outside. While walking around the National Mall today, I found a large hawk sitting on a branch watching Sunny and me. Do you see it?

Monday, December 9, 2019

Monday, December 9, 2019

Tonight's picture was taken in December of 2008. Mattie was home between hospital visits and we took him to see the National Christmas tree. Something Mattie always loved doing. I remember the very first year we did this, Mattie was checking out every little state tree and absolutely loved the trains that went around a track near the trees. Seeing the National tree was a family tradition, and cancer did not stop us that year. 









Quote of the day: Do not teach your children never to be angry; teach them how to be angry. ~ Lyman Abbott


I remember when Mattie was in the hospital, I would have friends who would visit me and question why I was so angry. They weren't questioning me as it related to Mattie having cancer, but with regard to my anger at the medical staff. My anger was always warranted and I reserved it for times when I saw great injustices in Mattie's treatment and care. I specifically recall one day, post limb salvaging surgery, when Mattie was crying and screaming in pain. His pain management was poor and there were internal fights going on between Mattie's surgeon, his care team, and the medical doctor who managed the pediatric intensive care unit (PICU). The problem was with these disagreement, Mattie was in the middle of them and suffering the consequences. Mattie's surgeon wanted me to have higher doses of pain meds and the head of the PICU countered the order. I am telling you it was like watching a bad tennis match, but the only problem was the ball was Mattie. So literally that particular afternoon, I absolutely blew up in the middle of the PICU. I confronted a doctor on the team and told her this internal battle about pain med management had to STOP and be resolved NOW, because I wasn't going to take another minute of the dysfunction. My friend heard me and I know she thought I was nuts. From an outsider's perspective she probably thought I was manufacturing the crisis, because who could believe that doctor egos could get in the way of providing good care to a child? 

I think anger is one of those feelings in life that is natural and normal. As anger can fuel us at times to accomplish great things. As long as anger is expressed in appropriate ways and with the intention to creating a positive result. Such as Mattie getting the pain meds he needed. This week as we are facing issues related to the health of Peter's parents, anger once again has reared its ugly head. Mainly because Peter and his brother are not on the same page about their parent's health, abilities, and next steps. I would have to say that Peter's family and my family have a night and day communication style and therefore my direct and upfront form of communication is typically shocking for them. Yet you know how it feels when you can see a train wreck coming? Most of us want to prevent it from happening, which is what I am trying to do. However, the more that I try to help, the more it is perceived as meddling and inappropriate. A great feeling, as once again it is clear I was and will never be a part of that family. 

In any case, here is today's photo. Physical therapists got Barbara up and walking. Rather remarkable since she had major spinal surgery on Friday. 

Sunday, December 8, 2019

Sunday, December 8, 2019

Tonight's picture was taken in December of 2008. Mattie was home between hospital treatments and we took him outside to our commons area for some fresh air. That day, one of my graduate assistants, Carrie, came over to visit us with her dog, Jax. Despite Jax's size, he was very good with Mattie. This photo captures the race Mattie and Jax were having with each other. 


Quote of the day: Frustration is an interesting emotional state, because it tends to bring out the worst in whoever is frustrated. Frustrated babies tend to throw food and make a mess. Frustrated citizens tend to execute kings and queens and make a democracy. And frustrated moths tend to bang up against light bulbs and make light fixtures all dusty. ~ Lemony Snicket

Dealing with a medical crisis is an interesting family dynamic, because people do not always unite together like in a Hallmark movie. Quite the opposite, if a relationship was challenging pre-crisis, illness is not going to make it better. Instead what you can face is a medical crisis plus intense family dysfunction. Which is unfortunately what Peter is dealing with in Boston and of course with technology, I am actually right in the middle of it. Communication to me is a big thing and I think it is important as adults that we find ways to get our points across. I become highly frustration when I am not heard, and especially when I am trying to help and instead my words get twisted and turned against me.  I will leave it at that, but simply put I am frustrated and bordering on angry. 

On Tuesday of this week, I went with my friend, Peggy to Meadowlark Botanical Gardens. Each year they do a winter lights experience in the Gardens. Where you can walk through the Gardens, and though it is cold, it can be a magical experience. Especially when it isn't crowded. 

Peggy's real estate company was having an event there, and I was invited. Typically I do not do these winter light events, because they usually set Peter and I off. Especially since this was something Mattie loved to do. But this year, because it wasn't crowded, I managed.

This is what I saw while walking down the pathway! 

Trees, bushes, and the lawn are lit up!

A garden of lights!

I should mention that along the way there is piped in Christmas music and sound effects. Like birds chirping. 

This caught all of our attention. These are lights coming down a hill. It was supposed to look like a stream.

Naturally, I stop for all butterflies.