Saturday, June 24, 2023

Saturday, June 24, 2023

Tonight's picture was taken on June 18, 2006. Mattie was four years old and we were out celebrating Father's Day. Mattie loved Clyde's restaurants and the irony is now decades later, I am back dining weekly at Clyde's because my parents love it too. When dining with Mattie, I traveled with a bag of tricks. You name it... puzzles, books, toy cars, toy trains, crayons, activity books, you get the picture!!! In this photo you can see Mattie and Peter busy at work while we were waiting for our food. 

Quote of the day: My scars remind me that I did indeed survive my deepest wounds. That in itself is an accomplishment. And they bring to mind something else, too. They remind me that the damage life has inflicted on me has, in many places, left me stronger and more resilient. What hurt me in the past has actually made me better equipped to face the present. ~ Steve Goodier

Typically on a Saturday, my dad's physical therapist comes over and works with him for an hour. However, she couldn't come over today, because she had an in service training at the hospital. In many ways, less structure on a Saturday is a good thing. I was able to go to the farmer's market with my mom after I got my dad settled in his recliner. 

One of the farmer's at the market has taken a liking to me and my family and she LOVES to talk with me. I know about almost everyone in her family and the challenges she faces with each. I am not talking about short conversations either. She can talk to me for an hour or more. Because I know this will happen, I brought my dad's rollator to the market today since I knew my mom couldn't stand for that long period of time. The beauty of the rollator is it has wheels, a seat, and brakes. My intentions were good, but what I noticed after about an hour, was that my mom was worn out (even from sitting with the rollator). I had to take her back to the car, while I finished shopping. 

It is moments like these that remind me that I am absolutely correct! There is no way my mom can travel by herself and though she wants to go away and even go on a cruise, it just is no longer possible. Her physical therapist even told her that she has to master walking on pavement and uneven surfaces first! 

You would think that going to the farmer's market would be a positive and good diversion. Certainly it is, but it is also wearing. Mainly because I need someone to listen to me for an hour, not the other way around. Since I was a child, people loved to talk with me. I am truly interested in people, their lives, and experiences. Despite how exhausted I am now, I still care about people and their well-being. I understand the importance of talking and that not everyone has an outlet. So after listening and chatting at the farmer's market, I came back home further depleted. Of course there was no resting for me, as I came back to laundry, other chores, and then drove my parents to Maryland for lunch. 

The highlight of my day was working for about thirty minutes in our garden. I went outside and weeded with Peter. Who knew that weeding could be so therapeutic!?

Friday, June 23, 2023

Friday, June 23, 2023

Tonight's picture was taken in June of 2008. Mattie was six years old and it was his kindergarten's end of the year party. I remember it distinctly as it was held at a local park and I volunteered to work at the event. I tried to always get involved if the opportunity presented itself! Thank goodness that I did because I was able to capture this wonderful photo of Mattie with Charlotte and Cooper, his two close friends! What most people did not realize was prior to coming to kindergarten Mattie and I worked hard together at speech and occupational therapy. Early interventions worked so well that by that point in time, no one would have known about any of Mattie's sensory issues. 

Quote of the day: It is only in our darkest hours that we may discover the true strength of the brilliant light within ourselves that can never, ever, be dimmed. ~ Doe Zantamata

It was an interesting physical therapy session with my mom this morning. I would say she started it off rather edgy and then had a mini meltdown. The therapist requested that my mom work on her sit to stand exercises. Basically getting up and down from a chair without using one's hands to push off. This is an exercise my mom truly hates. Every session, when doing this exercise, my mom describes it as 'torture.' My mom will then get very frustrated, agitated, and I thought today she was going to completely shut down. Of course me and the therapist noticed this extreme behavior. In addition, it is very evident to me, that my mom has a significant memory issue. 

Example, last week we noticed she was getting a facial rash. I suspected it was caused from a statin drug she just started. So when I consulted with the doctor, he suggested that we stop the medication for two weeks to see if we noticed a difference. In any case, despite stopping the medication, my mom requests her statin pill. Last night, I reminded her that we have stopped this medication for two weeks. Unfortunately that did not trigger her memory. So I asked her.... do you know why we stopped this medication? Her answer was 'NO!' Therefore, I reminded her about the rash. This is just a very small example to my daily issues and concerns I have about my mom. 

But what gets me in particular is my mom's total lack of insight about her issues, and refuses to listen to reason. After my dad was hospitalized twice in 2020, their family doctor asked me..... didn't your mom see how sick your dad was? That he lost thirty pounds without trying? Of course the answer is NO, she did not realize it because her perception of people and situations are dramatically altered. I assure you it is a hard reality for me to accept, but given that I am responsible for both of my parents, I am a realist. 

At today's therapy session, my mom basically told the therapist that she hates Virginia, doesn't like our weather, and life was more fun in Los Angeles. My mom wants to go back and I wish I could make that happen, but given my dad's decline and her own, it just isn't possible! I couldn't possibly put her on a plane and have her navigate to a hotel, make plans, and be able to care for herself. Those days are gone. She doesn't accept that, but I must. Any case, hearing this constant lament about wanting to live in LA makes me upset, especially since I have given up my life in order for my parents to have one. 

After the therapy session, I confronted my mom about her meltdown in the session and about the reality of her behavior and physical issues. I don't care what medical testing indicates, I am quite certain my mom has a neurologic issue. It impacts her memory, her behavior, her balance, and her posture. So one has to ask..... will physical therapy make any difference, given that I suspect she has a chronic and progressive issue? I don't know the answer.

What I do know is that my mom's physical therapist sent me a private email today about my mom. She is very aware of my mom's memory loss. It shows up in spades during therapy because my mom can't remember most of the guidance and exercises the therapist gives her. The therapist suggested that my mom may want to start speech therapy, to help with memory strategies. But the therapist is sensitive about this issue as she knows how upset and defensive my mom can get. At the end of the day, I suspect this memory issue will be the number one reason why my mom won't qualify for more physical therapy. I saw this happen with my dad's case, but unlike my dad, my mom likes being physically active. Therefore, I am hoping that I can convince the therapist to work with my mom for as long as possible. Needless to say, lots of things are spinning around in my head tonight. 

Thursday, June 22, 2023

Thursday, June 22, 2023

Tonight's picture was taken in June of 2004. Mattie was two years old. That week we were visiting Peter's parents in Boston. I can't tell you how many generations have swung on this swing! I know I sure did when we were in college. Mattie loved it and he enjoyed all his Massachusetts adventures. Behind the family's house is a nature preserve, and this is truly a kid's playground. Mattie especially enjoyed experiencing all the things that Peter did as a child and he loved that his dad introduced him to the woods. 

Quote of the day: I've learned that you shouldn't go through life with a catcher's mitt on both hands; you need to be able to throw something back. ~ Maya Angelou

Peter is flying home from Portland on the red eye tonight. This morning, he did his usual run, and while out and about, he snapped some photos for me of his beautiful surroundings. While it is RAINING all week in the National Capital area, it is glorious in Portland! 

To me this space looks so serene and peaceful. I love all the views of Mt. Hood.  I have to admit that I did NOT know that Mt. Hood was a stratovolcano. In fact I had to look up what that term meant. Basically it is a volcano built up of alternate layers of lava and ash!

My freshman college roommate, Leslie, I think would love this place. I remember Leslie always telling our friendship group that she wanted to live in a log cabin when she got older. Isn't it funny that I thought about this memory, as soon as Peter sent me this photo!

Today's breakfast menu! I love all the freshly baked bread products and the creative drinks. 

Peter's lunch menu! If one has to work while in this beautiful setting then at least having innovative and memorable food helps!

For the past several nights I have stayed up late in order to create the Foundation's Walk 2023 video. To me this is a labor of love, but I enjoy the creative process and I also love sharing all the Walk photos with our supporters!

After my dad had his physical therapy appointment at home, I got my parents in the car and we went out to lunch. On a gloomy, rainy day, going out to eat helps to perk us up. Every Thursday, we dine at the same restaurant and work with a server named, Marquis. He put this cute sign on the table for us today. My dad liked it a lot, I think it made him feel special. 

Outings to restaurants are a good physical, mental, and social challenge for my dad and my mom. Yes it is more juggling for me, but since my parents have moved in, I am grateful to have met some outstanding people working in the restaurant industry. In fact, I would say that meeting these extraordinary individuals gives me hope about human nature and our future. 

Wednesday, June 21, 2023

Wednesday, June 21, 2023

Tonight's picture was taken in June of 2002. Mattie was two months old and Peter captured this peaceful moment! I emphasize, MOMENT! Mattie was resting here because he just ate. It was the sure way to calm him down. Mattie was into power naps and my joke was he was born "on!" What I learned early on was Mattie responded to fresh air and being outdoors, so no matter the weather we were outside and in it!

Quote of the day: Instead of worrying about what you cannot control, shift your energy to what you can create. ~ Roy T. Bennett

This morning I received an email from a fellow childhood cancer advocate. He is attending a national conference and in this particular case the psychologist and researcher based out of NYU is discussing the Psychosocial Standards of Care. Notice whose logo is attached to this evidence based research? That's right..... Mattie Miracle! I am grateful that the psychosocial field acknowledges and credits us for having the vision and determination to see these vital standards developed and published!

Meanwhile, out in Portland, Oregon, Peter sent me a few photos today! Check out this glorious setting for his leadership retreat! As I told Peter, to me this setting would be restorative.

I don't know what to absorb first, the roses, the pines, or Mt Hood. Just breathtaking. 

This was today's breakfast menu. Peter's boss, in my opinion, is a real foodie. She appreciates good food, enjoys creativity of ingredients, and thoughtfully thinks about food throughout the retreat. No detail is unaccounted for, as she even gives thought to having handcrafted drinks! My kind of lady!

This was today's lunch! Too bad I couldn't place my order to go. 

A close up of the soup, the salad (on the far left), the risotto and greens!

This morning, after I dropped my dad off at his memory center, I had a conference call at 11am. I told my mom, and I could see she wasn't happy about it. Since it was a Zoom call, I asked her not to do walking laps in the room next to my office. This truly bothered her and she was muttering under her breath. Keep in mind that I rarely schedule calls because my days are over scheduled and over programmed to manage my parents needs. I would have hoped my mom would have thought beyond herself for a minute and embraced the fact that I was having a call about the Psychosocial Standards of Care. Something that is important to me and to Mattie's Foundation! Forget it. 

I had a very productive call with a social worker in Kentucky who is implementing the Standards into practice at her hospital. I loved hearing the details and encouraged her to write and publish her work. She has designed a road map that I know other hospital systems would find intriguing and perhaps this would inspire other institutions to follow suit. After I got off the call, I tried to tell my mom about what I learned and she wasn't having any of it. She decided to ignore me. I don't care for that behavior and I confronted her head on. Needless to say this call reminded me of the amazing work that Mattie Miracle has done to date and as this clinician said to me.... we have changed the way care is provided to children with cancer. This is Mattie's legacy!

Tuesday, June 20, 2023

Tuesday, June 20, 2023 -- Mattie died 716 weeks ago today. 

Tonight's picture was taken in June of 2002. Mattie was two months old and I would say that Mattie was a great power napper. He would shut down for a few minutes and then perk right back up..... as if he slept for two hours!!! 

Quote of the day: Almost everything will work again if you unplug it for a few minutes, including you. ~ Anne Lamott

Peter is safely in Oregon. He got to his leadership retreat just a few hours ago. The bed and breakfast where the retreat is taking place is near the Hood River. The landscape looks stunning. 

Right outside Peter's room is an amazing view of Mt. Hood. I have never been to Oregon, so seeing photos and hearing about it through Peter's lens is lovely. 

Sakura Ridge has its own on-site creative chef. This was tonight's menu. 

Peter sent me a photo of the polenta and mushroom ragu. I am not at all surprised that Peter sent me food photos, because he knows how much I love food. While Peter can remember places because of landmarks, map coordinates, and terrain, I remember places and trips by what I ate. Rather funny, but that is me!

Monday, June 19, 2023

Monday, June 19, 2023

Tonight's picture was taken in June of 2005. Mattie was three years old. That spring, Peter's mom, mailed this cute whale kiddie pool to Mattie. It was the perfect size to fit on our deck. Mattie enjoyed water play, and typically the pool would be filled with all sorts of toys and creative play schemes would unfold. It is amazing all the fun we had on this deck, and it wasn't a very large space. Therefore the size of something is not what matters, but that connections, love, and memories that are made is what counts. We made plenty of wonderful memories at our townhouse in Washington, DC, and whenever I am in the city and drive by, I look up and remember our years with Mattie.  

Quote of the day: As you know, life is an echo; we get what we give. ~ David DeNotaris

If tonight's quote is accurate, then all I can say is I must have done something wrong. The day to day existence of being a caregiver is hard to describe. Of course in my perspective this isn't my first rodeo with caring for someone I love. I would have hoped that I served my time and then some given the heartache of watching Mattie endure cancer treatment and die. But there is so much about life that we have no control over, and despite the exhaustion and at times mixed emotions I manage, I can still see the kindness of those around me. 

Given that Peter was flying to Portland, Oregon today, I took my parents out for lunch. Otherwise, we are home all day, and that isn't a good plan for any of us. When we arrived at our table, Dawn surprised my dad with a stuffed monkey and a card of appreciation for Father's Day. 

We met Dawn in 2021, shortly after my parents moved here. Since my parents love going out to eat, I started to take them to different Clyde's restaurants in our area. One of which was in Reston, VA. It was at that restaurant we met Dawn. We have been connected with her ever since and she is so good with my dad that I now drive an hour to Maryland and back to see her. The original restaurant we met Dawn at, closed its doors in June of 2022. Most people wouldn't drive two hours in a day to see someone, but I would! Dawn has a way of getting my dad engaged, talking, and eating. So to me it is worth the trip! 

Dawn wrote in the card.... To My Favorite Dad!

See the mountain lion? Notice what is on his head! Yes a straw hat. Well here's the story on this. Peter saw this straw hat one day and placed it on one of the statues in the restaurant. However, when he does this, managers always see this and remove the hat later in the day. Today someone placed the hat on the cat! I noticed it immediately and sent a photo to Peter! Peter thinks this could be a social media ploy to get people into the restaurant to find where the hat is placed each day! In any case, the majority of people working and eating in the restaurant today did not see the hat on the cat AT ALL! Somehow this all made me laugh!

My exciting news is as of today, I have proceeded all 324 donations we received from the Foundation's Walk 2023. Every donor, sponsor, and raffle contributor has been acknowledged! I feel very proud of this accomplishment given what my days are like! Now I will be turning my attention to creating a Walk video this week. That is no easy task either, but I feel these videos are important for documentation purposes!   

Sunday, June 18, 2023

Sunday, June 18, 2023

Tonight's picture was taken in June of 2007, on Father's Day to be specific. Mattie was five years old, and that day we went for a Duck Tours ride in Washington, DC. The beauty of this tour is it covers both land and water. I thought Mattie would find the vehicle fascinating as how many terrain vehicles can also serve as a boat? The tour company gave us whistles in the shape of a duck's bill and while on the ride, it was a big adventure for all of us. 

Quote of the day: Is it possible to have a “Happy” Father’s Day after a loss of a child? Yes, but for very different reasons than most people think. The happiness comes into play when you reflect on the time you spent with your child, although you wished you had more time. You’re happy because it was an honor to be their dad. The love you feel inside for that child makes you smile and hurt at the same time. The happiness for these fathers does not come from a gift that was wrapped up real nice and given to them on this day. The happiness comes from the gift of being their dad. If you know a dad that has experienced the death of a child, don’t be afraid to reach out to him on this day or any day for that matter. As difficult of a day it is, he would love to hear from you. Someone acknowledging that he is a dad, a dad that has experienced the death of a child and is just trying to live a life to make his child proud. ~ Kelly Farley

This morning, Peter left the house at 7:20am, with our neighbor, Dave. Together they ran a 5k in honor of Father's Day. The race was called, Run with Dad 5K!

Since January, Peter has been committed to getting healthier, losing weight, and being more active. To date he has lost 26 pounds and began running each day for the last month. 

Given all I am balancing at home, I unfortunately could not go to the event. But I am glad Peter took photos! Ironically the race color this year was ORANGE! Seems to me that this was a direct sign from Mattie! 

Peter ran the 5K, or 3 miles, in 25 minutes. For someone who is not a runner, this seems rather impressive to me. 

Peter --- at the finish line! I have to say that in all the years we have been married, this is a first for me. Typically we have experienced events, activities, and issues together. Since my parents have moved in, our lives have completely changed. My days and evenings are fully occupied by my parents. There is no time for myself and certainly no time for Peter and me as a couple. Therefore, Peter has worked on finding outlets that are positive and life affirming. As there is not much happiness and joy in our home. 

When Peter came home this morning, I had him go in our backyard so I could snap some photos. This was Peter's first 5K, it is monumental that he has lost so much weight, feels better about himself, and can easily run 3 miles without a problem. 

Naturally, it being Father's Day, makes it a problematic day for Peter and therefore for me. I have not forgotten our loss, how childhood cancer has affected our lives, and perhaps the loss of Mattie and seeing the significant decline in my parents, compounds the sadness, depression, and existential trauma. 

As my lifetime friend Karen said today.... Sunny looks so proud of Peter's accomplishment. 

A close up of the t-shirt, medal, and racing bib.