Saturday, March 18, 2023

Saturday, March 18, 2023

Tonight's picture was taken in March of 2009. Believe it or not, this was a physical therapy session taking place in the hallway of the pediatric units. Mattie had everyone participating, from his art therapist, nurse, child life intern, hospital volunteer, and his buddy, Brandon. The incredible energy, compassionate, and care provided by all of these individuals to us were extraordinary. I do not know how we would have made it on a day by day basis without these super human beings! What you can't tell, from this photo, was that ABBA music was playing in the background. The group posed to Dancing Queen, a song that will always have special meaning!

Quote of the day: Do not let the roles you play in life make you forget that you are human. ~ Roy T. Bennett

My dad's physical therapist comes to our home every Thursday and Saturday. This is a new arrangement, as we started with Laura last Thursday. So today was session #3. However, I knew Laura would work out well because she works part time at the hospital and this is where we first met her. 

When my dad's physical therapy sessions were covered under Medicare, we worked with Laura. However, Medicare covers just so much and most definitely doesn't cover on-going physical therapy in the home. Which is why I first turned to a personal trainer to work with my dad. The trainer that was assigned to work with us was fabulous! We all loved Teddy. But then a month into working with Teddy, a family member of his was diagnosed with cancer, and he had to move out of town for family support. It was a big loss to say good-bye to Teddy, because he had great positive energy and my dad responded to him. 

After losing Teddy, I was scrambling. I mentioned to my mom's physical therapist that we needed to find a Teddy replacement, and it was at that point she told me that Laura does private practice work in clients' homes. This is a blessing because my dad responds better to an outsider when it comes to exercising. I have to pick my battles and I take on more than enough each day, so I am happy to turf this crucial part of my dad's week to Laura. I also like the fact that Laura and the team at the hospital are familiar with my dad and that Laura can keep my dad's rehab doctor apprised on his therapy progress. 

While my dad was working with Laura today, I hopped back on the computer and completed two more training modules! I am hoping to have this one course completed tomorrow, so I can begin the second training course on Monday. I am motivated to complete these mandatory courses in a timely fashion, because my ability to serve on the Standards research team is contingent on this and the team is working on a large scale research study to help implement our Standards of Care. 

Look how cute our Easter chickees are when they are lit up at night!!! 

Friday, March 17, 2023

Friday, March 17, 2023

Tonight's picture was taken in March of 2009. This is a special hallway to me that is captured in this photograph. I visit this hallway every time I go to the Georgetown University Hospital. It is the hallway of the Children's Art Gallery. That day, there was a grand opening celebration of the Gallery. We happened to be home that day, but drove to the hospital to participate in the event. Mattie and I both submitted art work, which was on display and as you can see, Mattie had a way of having an entourage! Taking the photo in blue is Kathleen, one of Mattie's HEM/ONC nurses. Next to Kathleen is Anna, Mattie's physical therapist and pushing Mattie in the wheelchair is Meg, a child life intern, who Mattie loved. These are incredible women, who I will never forget. I am sure most patients, families, and healthcare providers traverse this hallway daily. But none of them have these incredible memories of the opening day of the Gallery!

Quote of the day: Imagine if we were all magical leprechauns, and every wish ever made on a four-leaf clover obliged us to help others obtain their wishes. Now imagine if people simply lived like this were true. ~ Richelle E. Goodrich

This morning, after getting my dad off to his memory care center, and my mom situated, I went back at this ethical research training that I am required to do in order to be an official part of the Standards of Care research team. When I tell you this training is painful, I am not kidding. It is particularly challenging because I do not have big chunks of time to work, like I once did! In any case, this photo shows 14 modules that I need to complete within just ONE course. I have four courses altogether in my training folder. I completed one and I am trying to finish course number two. 

After each module, I have to take a quiz. You can only take the quiz ONCE! So you will notice that in my third module's quiz, I received a 75%. That freaked me out, so now I am reading carefully and taking my time at answering each module's questions. I have no idea what happens if I fail a course, and don't plan on finding out either. I am hoping I can get all 14 modules done this weekend, so I can begin the second course on Monday. 

Peter inflated our Easter chickee display today! It means to me that Spring is here!

Within thirty minutes of inflating this structure, our neighbor next door came over to check it out. He is 11 years old and has a special need. We were thrilled that he approved of the display and that it brought him fascination and happiness. 

The winter wreath is down and the spring one is up!

Meanwhile, Peter has taken on another big chore. He finished shingling the shed roof yesterday and today he moved to sanding our deck. The deck is in terrible shape and it truly needs some tender loving care. 

I snapped this photo of my dad today with his St. Patrick's Day pins!

I took my parents out to eat this afternoon and the restaurant had specials for St. Patrick's Day! I ordered Shepherd's Pie. It was delicious, but then again, I am a lamb fan. While dining there, I heard bag pipers. I am on the fence about whether I love that sound or can't stand it. My mom happens to love it and she was going room to room in the restaurant tracking down the guys in kilts! There was a wonderful festive vibe in the restaurant, and all the servers had green clover gear on in honor of the day. 

Thursday, March 16, 2023

Thursday, March 16, 2023

Tonight's picture was taken in March of 2009. Mattie was home between treatments and as you can see was doing water play in our living room. I can't tell you how many times this particular space in our home was used for water, paint, Legos, trains, and even clay. Mattie was a very hands-on fellow and though we never used the pink basin for medical reasons, we brought it home from the hospital so Mattie had another receptacle to fill with water! Despite all that he was going through, don't you just love that smile?

Quote of the day: Anxiety happens when you think you have to figure out everything all at once. Breathe. You're strong. You got this. Take it day by day. ~ Karen Salmansohn

I would have to say today I am a combination of exhausted and frustrated! The Research Team, that the Foundation is working with, had a call at 9am this morning. Though I would have liked to participate on the call, it was impossible given all that I am balancing. At that time of morning, I have to get my dad up, showered, dressed and downstairs for breakfast, because his physical therapist comes at 11am on Thursdays. I try NOT to dwell on all the things I am missing out on. Not just caring for myself, interacting with friends, but also being a professional human being! 

Caregiving has resulted in one thing...... a complete fading of Vicki the person. Because I couldn't be on the call today, I had Peter participate. Of course Peter can represent the Foundation beautifully and frankly on conference calls, he is much better than me, because his consulting skills kick in and he has a way of drawing out dialogue and insights from everyone. Nonetheless, I still wasn't happy about not being on the call. I am not sure if it is the call itself that upset me, or the sheer fact that I have no independence or freedom. 

On another note, my dad is super fixated on Peter. He always wants Peter to be going out with us when we eat (which isn't possible given that Peter had been looking for a job and is now focused on house projects), and my dad's latest kick is his focus on how happy he is that Peter found a great job opportunity. My dad is very fond of Peter and my dad reminded me today (as if I needed this), the enormous stress Peter was under because of his job hunting. Honestly some moments I can go with the flow, and others, I just can't! This afternoon, after hearing this lament about Peter twenty times, during the 21st time, I said, I GET IT! I know all about Peter's stresses, but if my dad wanted the TRUE 411 on daily stresses, I would enlighten him. Of course I never did! But my parents don't see my stresses, how I am compromising my own life to manage these daily 24/7 tasks, and this all frustrates me. I am very tired and this contributes to my inability to be a mature, kind, and rational person all the time. When feeling this way, I have to pause, take a deep breath and as today's quote points out, I have to take it 'day by day.'

Wednesday, March 15, 2023

Wednesday, March 15, 2023

Tonight's picture was taken in March of 2009. Mattie was in the outpatient clinic that day, and was visited by employees of United Airlines. They came to deliver teddy bears to all the children. As you can see, Mattie was posing with the United representatives and the cute bear! The generosity of countless organizations, businesses, non-profits, and our care team made the daily stresses of hospital life much more manageable. I can't tell you how even the smallest of gifts could turn a difficult moment around for us!

Quote of the day: Perspective is everything when you are experiencing the challenges of life. ~ Joni Eareckson Tada

Given how my mom is feeling, I have canceled everything on her schedule for this week, including physical therapy and a trip to the hair salon. I got my dad up at his usual time, followed my usual schedule with him, and then Peter drove my dad to the memory care center. By 10am, my mom was still not downstairs, so I went upstairs to check on her. She looked completely wiped out and exhausted. After she had breakfast, I helped her to the couch to rest for several hours.

While my mom rested, I logged back onto a training site I was given to continue the course work I need to complete to participate in the Foundation's large scale research study. I have to tell you this is beyond PAINFUL! Yesterday, I completed these four modules. After each module, I have to take and pass a quiz. You can see my scores range from a 60% to 100%. Yesterday's modules were on financial conflicts of interest in research. The materials read like a legal briefing! When I completed these four modules yesterday, I thought I was DONE! NOT SUCH LUCK, as I could see more course work to complete in my folder. 

This morning, my folder showed that I had three more courses to take! You might say, how bad could that be???? I assure you it's bad, because one course has 14 training modules. This one course will take me days to complete given my caregiving schedule. Today I completed 5 modules out of the 14.

This is the listing of the 14 modules and as you see I completed 5! I did well on four out of the five quizzes. One quiz, I missed one question, and that gave me a 75%. Which is why I need to focus and get it right the first time, because I don't want to know what happens if I fail the course. The notion of doing this again is NOT appealing. 

Meanwhile, Peter is working around the house on multiple projects before starting work on April 15! Despite the wind and cold temperatures, he was re-shingling our shed roof. 

While putting laundry away in my dad's bathroom, I had a side kick! Miss Indie LOVES the sun and basically travels around the house capturing the warmth through the windows. 

This afternoon, I received this photo from our friend, who happens to be the leader of our Standards of Care research project. She is out in Portland, Oregon at a conference. One of the sessions featured Mattie Miracle, so she thought I would love to see this.... which of course I DO! 

This session covered a research study conducted by a psychosocial professional based in Texas. The researcher implemented the Psychosocial Standards of Care at her institution and she was sharing data about the process. It is always wonderful to see the Standards being operationalized in research and practice in order to improve the quality of care for children with cancer and their families. 

Tuesday, March 14, 2023

Tuesday, March 14, 2023 -- Mattie died 702 weeks ago today. 

Tonight's picture was taken in March of 2009. Mattie was admitted that day to the hospital for his next round of treatment. How do I know? I know because when in the hospital, Mattie insisted on ONLY wearing pajamas. When he was home or arrived at the hospital from home, he would dress in regular clothes. Interesting, no? I think that said volumes. In any case, that day I snapped a photo of the IV behind Mattie. Notice that the liquid going into Mattie's body was RED! It was Doxorubicin, one of the chemotherapies in Mattie's treatment regimen. Doesn't the color make you want to take notice and warn you to be cautious around it?

Quote of the day: The greatest remedy for anger is delay. ~ Seneca

When I went to wake my dad up this morning, my mom explained to me that my dad was up every 30 minutes last night. He got up, would go to the bathroom, and then sit on the toilet for about 15 minutes. Then he would repeat this cycle every 30 minutes. My mom is still recovering, and is on her third round of antibiotics. In order to heal, she needs to sleep and rest. Unfortunately that did not happen for her last night, so she was in a state today. Naturally I have to figure out why my dad is doing this night behavior. This is unusual for him and of course my mind wanders to him having a urinary tract infection or kidney stone. The sad part is my dad can't report out how he is feeling and he doesn't even remember being up all night! Which makes understanding or having insight about what he is experiencing very difficult. 

In addition, today was one of the days my dad was home the whole day. He did not have his memory care program, which meant that it was hard for me to get anything done. I was scheduled to take my parents for a dental cleaning today, but given my mom's health, I canceled that plan too. 

Later in the morning, I received an email that I had to take on-line ethical trainings for a research project Mattie Miracle is involved in. Honestly I just can't handle one more thing on my plate. I literally went through four training modules today and got a certificate of completion. I thought I was therefore done, until I went back to my course folder. 

Once in the folder, I found several more courses I have to complete! Literally, I LOST IT. I became angry, especially since I am juggling cooking, cleaning, and my dad's bathroom trips all at the same time. So instead, I decided to follow the sentiment that is reflected in tonight's quote...... I literally closed the on-line training program and will open it up another day. I can only absorb so much at once and that decision, helped to dissipate my frustration.

Monday, March 13, 2023

Monday, March 13, 2023

Tonight's picture was taken in March of 2009. I took this photo because I wanted to capture the antics that typically occurred in Mattie's room! The two women with blond hair are Whitney and Lesley. They were both child life interns and phenomenal people! Mattie loved them, which was high praise, because Mattie didn't get along with everyone, especially when so sick. The fellow peeking out of the door is Brandon. Brandon was Mattie's best buddy. The boys met at the hospital, as Brandon was diagnosed with cancer about a month after Mattie. Despite their age difference, they were amazing friends. 

Quote of the day: Gratitude turns what we have into enough, and more. It turns denial into acceptance, chaos into order, confusion into clarity...it makes sense of our past, brings peace for today, and creates a vision for tomorrow. ~ Melody Beattie

We have become good friends with all the wonderful individuals who serve us when I take my parents out to eat. I have become so connected with them, that I have their cell phone numbers and we chat throughout the week and I always give them a head's up when we are coming in. 

Every Sunday, we go to the same restaurant for an early dinner. Cheryl is our server at this particular restaurant. Cheryl has been following Peter's job search and she has been sharing in my angst for over a week, as we were awaiting a job offer for Peter. I shared the good news with Cheryl about the offer on Saturday. 

Don't you know that when we arrived at our restaurant table on Sunday afternoon, Cheryl surprised Peter with a beautiful card, flowers, a balloon, 'Yay' plates and napkins.

The wonderful balloon! The special part about all of this is we weren't expecting any of this and Peter was very surprised and truly touched by her kindness. 

Peter and Cheryl!

This is the meaningful card Cheryl wrote to Peter. I thought it was so touching that I snapped a photo of it!

It reads:

Dear Peter, 

Congrats!!! I'm so very happy for you (& Vicki)!!

Reverba took months and months trying to find the..... Perfect man for the job, the right man for the job, and the very best man for the job.... not to mention, the most capable, caring man to take over the company, to be president and they were "smart" enough to realize that's YOU!

No doubt your contribution, hard work, and leadership skills will greatly benefit so many people's lives. I wish you every happiness, success and satisfaction in your new, well-deserved position!! Love Cheryl

When I got home, I placed the flowers in a vase and have all these items in our front hallway. Cheryl was able to do all the things I would have wanted to do! Which makes me grateful. 

Yesterday evening, Peter and I went over to my neighbor's house. My neighbor has her own hands full, as two out of her four children have special needs and she recently moved into the house. So she constantly has a juggling act going. Not unlike what I have going on in our house, but for different reasons. 

We played the card game, Five Crowns, together! I had my neighbor's 11 year old explain the rules of the game to me, but basically Peter and I consulted with YouTube before we went over and saw a tutorial on how to play. Since I am not really a card game, or board game person in general, I needed all the help I could get.

Make a long story short, I caught on quick, as the game is very similar to Gin Rummy. Naturally I haven't played with kids for quite some time. What is typically evident is that kids gravitate to Peter first. Peter knows how to horse around, make jokes, and naturally draws kids in. While Peter was doing that, I was observing everything and everyone and getting an idea of what was going on throughout the house. After we played with my neighbor's 11 year old, then her four year old woke up and came downstairs. The four year old calls Peter, "Mr. Peter" and she has met him before and enjoys interacting with him. In any case, the little girl wanted to play Candy Land with us, so we played several rounds and then at 9:30pm, I stood up, left Peter behind, and headed back home to take my dad upstairs to bed.  

Sunday, March 12, 2023

Sunday, March 12, 2023

Tonight's picture was taken in March of 2009. That day, Mattie was invited to the hospital to attend the ceremony for the launching of the children's art gallery. Mattie was excited to attend, especially since he contributed art work for the exhibition! Ironically Mattie's creative story is still on display within this gallery. Next to Mattie was Kathleen, one of his outstanding HEM/ONC nurses. They both made a silly face for the camera, and I caught them in action. Mattie's nurses are incredible women. Competent, fierce advocates, and deeply compassionate. 

Quote of the day: We need to remind ourselves of the beauty of human connection and of nature and pull ourselves out of devices for a moment and appreciate what it is just to be human beings. ~ Olivia Wilde

Have you ever heard of this game? I know I haven't! Peter and I have been invited over to our neighbor's house this evening to play Five Crowns. We will be playing with our neighbor and her oldest son. 

Naturally if you have been reading my blog for the last year plus, you know I don't do social things anymore. Much less get out of the house if it isn't to take my parents to appointments our out to eat. 

I am going for multiple reasons. One is that it is right next door, two, my parents will have had dinner already and by that point will be relaxing in the family room, and three, my neighbor understands that I am a full-time caregiver and can only stay for an hour or two at the most. 

But to say that I get anxious now regarding any sort of socialization is to put things mildly. I realize my life isn't normal and seeing people's reaction to what I am balancing makes me edgy. In addition, my ability to interact and play with children is rusty. After Mattie died, my time with children has been little to non-existent. There is an art form to playing with children and all I know is I am tired, exhausted, and therefore not as with it and in tune as I once was. I do think intense caregiving can suck the life out of you and between that and the clocks moving forward an hour, I am dragging today. 

Any case, wish my luck with learning to play Five Crowns and being able to make a normal human connection.