Saturday, February 3, 2024

Saturday, February 3, 2024

Tonight's picture was taken in January of 2003. Mattie was 9 months old and at that point he loved crackers and cereal. He wasn't in love with sitting in a high chair, but he tolerated it as we always played games and had all sorts of interactions to distract and engage Mattie's mind. Look at those big beautiful eyes! 

Quote of the day: Your place I’ll hold, you will be missed, the fur I stroked, the nose I kissed. And as you journey to your final rest, take with you this … I loved you best. ~ Jim Willis

Look at that face! Sunny loved lying on his back, kicking his legs up and looking at me with his big eyes. What Sunny was looking for were belly rubs. One of his favorites! This photo was taken in Mattie's bedroom, which I later used as my office. If I was upstairs, so was Sunny. He followed and tracked me, NOT unlike Mattie. 

You may not be able to tell from this photo, but Sunny's front top teeth hung over his lower teeth. So he had an overbite. I can't tell you how many vets fell in love with Sunny over what they deemed was a cute overbite! He always received lots of OHHHs and AHHHHs!

I had my usual routine this morning of waking up at 6:30am, feeding the cat, getting myself showered and dressed, made breakfast, cleaned out the cat litter box, vacuumed the first floor, and then went upstairs..... made my parent's bed, got my dad washed and dressed and downstairs for breakfast. Started the laundry. My dad's physical therapist came over at 11am. Physical therapy for my dad is crucial, as the key to keeping him at home is his ability to move. Thankfully I have been able to secure four sessions of PT for my dad each week. 

While my dad was in his session, I hopped on my Saturday support group meeting. This was the second session I attended. The first session was a speaker's session, where a guest led a discussion. So today was more like a real support group session. The session was three hours LONG. Honestly by the time I was finished I wanted to lie down, but in my house that isn't possible, as my parents were ready to go out for frozen yogurt. Something I promised to do with them in the afternoon. 

Typically I am not a support group type of person. I did not excel in this form of therapy in graduate school either. Why? Two issues. The first, if I am experiencing a crisis, I really do not want to hear yours! I don't like comparisons or hearing unsolicited advice. But my second issue is I land up getting very wrapped up in group member issues, that I want to serve in a counseling capacity rather than as a fellow group member! What I can report is I have already become friends with one woman in the support group and get this.... she lives in England. 

This afternoon, I drove my parents to the frozen yogurt store. When I got out, I could see that a whole girl scout troop was inside, therefore there were NO chairs and tables. I knew I had to come up with plan B. Frankly I was tired and hungry, and just wanted to go home. But I knew that wasn't the solution. So I looked up on a map what else was around us and found a Dairy Queen. I am a big DQ fan! It reminds me of all my trips to the North Carolina beaches! Which is where I had my first DQ experience and was introduced to a DQ Blizzard!

Any case, this was the first time my parents went into a Dairy Queen and my mom had a pumpkin pie Blizzard, I had an oreo hot cocoa Blizzard, and my dad had a parfait with peanuts and hot fudge. They were happy campers. If a Blizzard doesn't make one happy, nothing will. 

Friday, February 2, 2024

Friday, February 2, 2024

Tonight's picture was taken in January of 2003. Mattie was zooming around our first floor in his "tot wheels." Mattie had no patience for crawling and wanted to move right to walking and running. This walker gave him the freedom and independence he craved. What I will always remember was regardless of where I was, Mattie was never far behind.  

Quote of the day: No matter how little money and how few possessions you own, having a dog makes you rich. ~ Louis Sabin

After dropping my dad off at his memory care center, I went to our local Starbuck's and met my friend Ann. I typically do not leave my mom home by herself for long, but I had prepped her breakfast, had the TV on for her, and wrote a note reminding her that I would be back at 1pm, to take her out for tea. Despite talking her about my meeting today and even writing a note, it did not register for her and by the time I came home, I could tell that she thought I forgot about her. 

In any case, I met with my friend for two hours and we talked about all sort of things and caught up on each other's life. It was a very nice not to have anyone in tow with me and therefore the only one I was worried about in those two hours was myself. A rarity for me! 

Ann spent a lot of time with Sunny over the years. They got along very well together and I will never forget the day I moved from the city to Northern Virginia in 2021. Things were so chaotic with the movers, that I literally called Ann that morning and told her she had to come over to pick up Sunny and take him back to her house. Which she did! Sunny spent a lot of time at Ann's house over the years, so for him it was like a home away from home. If I visited Ann (before my parents moved in), I typically brought Sunny with me. When I tell you he was my constant companion, I AM NOT KIDDING! Ann gave me this beautiful memorial stone today! I was going to put it in my office, but right now it sits on my kitchen counter, in a corner where I used to store all of Sunny's medications. The ironic part is from that location on the counter, I can see Sunny's photo while I am sitting at our breakfast table. I feel as if we are still looking into each other's eyes now. This was a morning tradition we had with each other. I would be sitting at the breakfast table, eating quickly to keep up with my dad, and Sunny would be watching me closely from his favorite spot on our deck! I love being able to see Sunny's beautiful face from my seat at the table. 

I was scheduled to make a call today regarding my dad's health insurance, but one thing lead to another, and it did not happen. I got derailed with my mom's long term care insurance, scheduling her in-home PT sessions, reaching out to her rehab doctor and the list went on. Truly any one of these issues is like a rabbit hole, and it is never just a quick call or issue to resolve. 

Thursday, February 1, 2024

Thursday, February 1, 2024

Tonight's picture was taken in January of 2005. Mattie was two and half years old. By that point, he LOVED bath time. He practically would request it every afternoon! Not because he liked getting clean, but because he enjoyed playing in the water and bringing toys into the tub. As you can see, I had drained the tub after his bath, but Mattie did not want to get out!

Quote of the day: Dogs have a way of finding the people who need them and filling an emptiness we didn’t ever know we had. ~ Thom Jones

This is the third week without Sunny in my life. We had a plumbing inspection today and the first thing my plumber commented on was.... he missed being greeted by Sunny. Sunny loved company, he loved people, and he had a way of making you feel welcomed to come into our home. I am so glad that Cody commented on that with me today. 

Meanwhile, don't you just love this photo?! Though Sunny was over 60 pounds, he loved spending time on the couch and when he was able to do stairs and jump... he loved being on our bed. Of course if Sunny was on our couch, there was very little room for the rest of us. But that was okay! I miss this adorable boy, with his beautiful fantail! 

My dad had a good physical therapy appointment today. In fact, he won a doll in a bingo game at his memory care center, and he gave the doll to this therapist, as she has a two year old daughter. He was very proud of that achievement and his ability to give a gift! After doing grocery shopping and putting it away, folding the laundry, and do other chores, I got my parents in the car and took them out for frozen yogurt. Getting moving and out of the house each day is vital for all of us. 

When I got home, I spoke to a county land surveyor, because with my neighbor's renovation next door, I have some concerns. I will be meeting with him again tomorrow, and found him very helpful. Meanwhile, since it was in the 50s today, I decided to walk around the property, collect sticks and downed tree limbs. Trust me this alone could be a full time job. As you can see I have filled one entire bin filled with sticks! I have other piles in the backyard, but will have to dispose of them a little at a time. While breaking in half a big tree limb today, I once again fell backwards. This is my third fall in less than a year (because I am doing all sorts of tasks around the house), and when I fall, I fall on the part of my backside that contributes to my sciatic nerve issue. 

My mother in law sent me a Lego kit yesterday in the mail for Valentine's Day. I am actually very touched by this gift. While grocery shopping today, it was impossible NOT to see all the Valentine's themed flowers, chocolate strawberries and gifts. I would like to say I tuned them out, but unfortunately all these sights hit me hard. 

I began working on the Lego kit this morning and then finished the heart while making dinner. I think Mattie would have been proud of me, as he was a huge Legos fan. What I can say is while focusing on Legos, I don't dwell on anything else. I know this was true for us when Mattie was in the hospital. Which is why I believe Legos are therapeutic tools and I appreciated the ability to separate from my problems for a while and create this beautiful symbol of love.

I put my Lego heart right by Mattie's Mr. Sun painting. Seemed very appropriate, as this heart symbolizes a love that can never be broken. 

Wednesday, January 31, 2024

Wednesday, January 31, 2024

Tonight's picture was taken in January of 2009. Mattie was home from the hospital and he got a lovely delivery of ice cream and a fairy wand, from the Dairy Godmother in Alexandria, VA. No matter how badly Mattie was feeling, ice cream was always a food of choice. That was something we both had in common. Honestly I do not know how Mattie was even able to smile. Because what he was facing each day would cause most adults to puddle in a corner. As I always say.... Mattie was my greatest teacher in life. 

Quote of the day: All dogs go to heaven because, unlike people, dogs are naturally good and loyal and kind. ~ Melba Moore

This photo was taken in 2020, during the height of COVID-19. Sunny was recovering from his first knee surgery. The poor fellow couldn't walk without assistance, so we pulled out Mattie's big radio flyer wagon and each time we took Sunny out to relieve himself, we put him in the wagon. I am sure this was a funny sight for people to see, but my focus was only on Sunny, his health, and recovery! If this radio flyer wagon could talk! It transported both Mattie and Sunny around our neighborhood in the city. 

After dropping my dad off at the memory care center today, I went to Mattie Miracle's bank to discuss some emails the Foundation received from two potential donors. I was very suspicious about the emails, mainly because both used the same exact messaging. Not only the same exact words, but in the same format. Both people (who I did not know) wanted to make a $2,000 donation to the Foundation. They claimed that they heard about our good work and were going to put me in touch with their financial advisor. Needless to say the banker confirmed for me that the emails were scams, to block communication with them, and she also told me that if they send me a check, there is NO way to verify a check from an outside bank. In addition, she went on to tell me if a check bounces, that I would be the responsible party who would have to pay the bank back. I heard enough to know that if these two individuals send me money, neither check will be cashed. The banker said I did the right thing coming into the bank, as they like seeing these emails for themselves. 

Once I got back in the car, I called my father-in-law. He turned 90 years old today. A real milestone. I sent him this glass collage saying.... celebrating the beauty of you!

I received many surprises in the mail today. The first one was this card from Sunny's pet insurer. On the inside it said... Our entire family of pet parents shares in the sadness of your loss. With heartfelt condolences. Your friends at Nationwide. 

About a month before Sunny started his rapid decline, I completed his application for his dog license in Fairfax County. Which meant that he had to see the vet and get his updated vaccines. It truly would have NEVER dawned on me at that time that Sunny was dying. Now I have the tag, but NO SUNNY!

This evening, I had my therapy appointment. I can't say that I am learning anything new about myself from these weekly meetings, but the notion is to have an outlet for support. No matter what I am facing, I am well grounded in my thoughts, feelings, and values. 

When I got home, two packages awaited me. One was this charming Lego heart kit. I learned that this gift was given to me by my mother in law. It is in memory of Mattie (who loved Legos) and to remind me I am loved. Very touching and very appreciated. 

I was surprised with four pints of ice cream from my friend Christine. To me chocolate and ice cream are my drugs of choice and these goodies can brighten even the darkest of days. 

I met Christine at Mattie's elementary school. Her son, Campbell, and Mattie were in kindergarten together. They formed a tight friendship and through their bond, Christine and I got to know one another. We clicked right away and many of our supporters know Christine, as she was our Walk registration chair at all our LIVE Walks!

I love the details on the container! Look at this top!

How about this one!

I literally tried all four flavors, and loved each one!

Tuesday, January 30, 2024

Tuesday, January 30, 2024 -- Mattie died 748 weeks ago today.

Tonight's picture was taken in January of 2009. That day we took Mattie out for lunch. We went to one of his favorite restaurants, and this one had a train that ran on a track above diners. Despite all that Mattie was facing.... the fact that he couldn't walk independently anymore, was feeling crummy, and spent more time living in a hospital than at home... he was still able to smile. Truly a remarkable boy and I believe our connection and love, helped him through this horrific nightmare. 

Quote of the day: Dogs die. But dogs live too. Right up until they die, they live. They live brave, beautiful lives. They protect their families. And love us. And make our lives a little brighter. And they don’t waste time being afraid of tomorrow. ~ Dan Gemeinhart

I absolutely love this photo! Both Mattie and Sunny used to do this.... be in our front hallway and stare out onto the deck. Though Sunny and Mattie never met each other, I sometimes had to pause, because they did similar things.... like this! 

Sunny LOVED outdoor time. Though we did not have a backyard when we lived in the city, Sunny had access to our deck and commons area (outside our deck). This commons area was fantastic as it was fully secure from the street and outside world. So much happened in that commons area... Mattie learned to run, fly a kite, ride a bicycle, and drive Speedy Red. 

Of course for Sunny, our commons area was where he could run around off leash and met up with many dogs of fellow residents! How I wish I could turn back time. 

I have a core group of friends and family members that reach out to me on a daily basis. What truly touches my heart is the incredible love, compassion, and support that I am receiving. Better yet what I find is that people are very protective of me and I would like to think this is a result of the kind of life that I have lived. One in which I try to put others first, in which I try to be kind, compassionate, and giving of my time, care, and support. I do believe that in life we get back what we give and once again in my life, as I face more sadness and trauma, people aren't running the other way. Instead they are running towards me. This doesn't go unnoticed, unappreciated, and most definitely do not take it for granted. Every email, text message, card, and gift gets me through the day. 

Tomorrow, I have an appointment at Mattie Miracle's bank. I have received two very suspicious emails and I want a banker to look at them and then tell me what I should do if I actually get a check from one of these people! I have heard that scammers can get access to one's bank account if you cash their checks. I frankly don't know if this is true or false, but rest assured I am going to find out! All the things I am learning and the stress each one provides in my life is huge. 

This evening, over dinner, my mom was driving me crazy. She can get stuck on a particular issue and then beat it into ad nauseum. Some days I can deal with it better than others, but today wasn't that day. So I confronted her and told her I needed a break from heartache, a break from talking about bills, a break from noise, the construction project next door to us, and simply A BREAK. She got it, of course she lashed out about my request, but she stopped.

Monday, January 29, 2024

 Monday, January 29, 2024

Tonight's picture was taken in January of 2009. This was classic Mattie. He was in the middle of a physical therapy session in the hospital hallway, and don't you know it, he had an entourage. Mattie's psychosocial team was comprised of incredible women, who never came to a therapy session empty handed. As you can see Mattie was opening boxes, checking things out, and no therapy session was ever ordinary. Mattie's physical therapist, Anna, learned early on that she had to think way outside the box to get Mattie engaged, participating, and buying into the therapy process. She was the best and I will always be grateful for their incredible therapeutic connection they had with one another. 

Quote of the day: When you adopt a dog, you have a lot of very good days and one very bad day. ~ W. Bruce Cameron

My Sunman with his "Good Citizenship" certificate. We worked hard to achieve this document, but in all reality, Sunny was already well trained when we rescued him. The behavior classes were really more for me and I learned to give commands to Sunny. Sunny was the model dog, and made me LOOK good. In order to become a therapy dog, we first had to pass the good citizenship test! We did and the prize Sunny picked out that day was the red toy bone sitting in my lap.

The highlight of my day is that I went out with my friend Margy's daughter. Margy lost her battle to cancer in 2021. Her death was another huge loss in my life. Margy left behind many gifts for me such as her husband, daughter, and sisters. All of whom are big supporters of Mattie Miracle. In fact, Mattie Miracle runs the M&M (Margy and Mattie) Wishes program (which gives grants to children with cancer) in memory of Margy and the amazing childhood cancer advocacy work she did for over twenty years. Being with Margy's daughter today made me feel at times like I was actually with Margy. There are so many similarities and like my time with Margy, Kristy and I can talk up a storm too. In those two hours, I felt more engaged with the world and I know my mom enjoyed the conversation too. 

I think it is rather ironic that in the last four days, I have heard the song, Brave (video below)! I happen to love this song and used it for one of our Foundation Walk videos. I heard it at the grocery store and now today while having lunch. Naturally I know this song wasn't played just for me, because it is a popular song, it isn't unusual to hear it when out and about. But given the many adjustments in my life, the words mean so much more to me now. When I hear it, it is like the inner mantra that plays in my head. It takes a great deal of bravery to even get out of bed in the morning and then to have a full day of caregiving, putting out figurative fires, and managing non-stop tasks. 

Each day I ask God for strength, courage, love, bravery, and most of all hope. 

Sunday, January 28, 2024

Sunday, January 28, 2024

Tonight's picture was taken in January of 2009. I will never forget this moment in time. Mattie was at his "girlfriend's" birthday party. Charlotte is not pictured here. Instead, Mattie was sitting next to his good friends, Abbie and Campbell. I have to say that this party was hard for Mattie as he couldn't relate to the other kids. However, his core group of friends stuck by him and made sure he wasn't isolated out. Honestly I learned so much from Mattie's friends during his cancer journey and the power of friendship. Certainly friendship couldn't change how Mattie was feeling or the fact that he had cancer, but feeling connected and a part of something were powerful and meaningful forces of his healing. 

Quote of the day: We need to go first because we cannot live without your love and care. If we lived longer than you, we would not and could not survive. It’s supposed to be this way. We also need to cross the rainbow bridge before you do so that we can be on the other side to greet you when you get there. We wait at home for you here, and we wait at home for you there. It’s just the way it is. ~ Kate McGahan

This maybe one of my favorite photos! I took of Sunny when living in the city. That day we went for our walk and then in front of our complex was a beautiful bank of tulips. I stopped and snapped this photo. One thing I will always remember, and that is when walking Sunny in the city, not a day went by without someone stopping to talk with me and comment.... what a beautiful dog! Since moving to the suburbs, NOT one person has ever commented about the beauty of the Sunman. Who knows why, but I always made a note of it. In addition, I also noticed that city dogs and their owners are far friendlier than in the suburbs. In the suburbs no one wants to stop and talk. Most of the dogs in our neighborhood, border on unstable, and the owners are not interested in making a connection. What a sad commentary. Fortunately Sunny and I had many happy walks and time to bond in the city with each other and other dogs. 

When I read tonight's quote, it made me cry. There is something about that Rainbow Bridge that gets to me every time. What I do know is when Mattie first died, I always worried.... who is taking care of Mattie now? Is he happy? Is he scared? What does his life look like now? I was plagued with these questions for months. As his mom, I felt that I should be there for him, to protect him, and the physical separation from him was earth shattering. All I can say is I wish Mattie were alive now, as I could use his support, loyalty, and love. One thing was always clear to me and that was our incredibly strong bond. We were emotionally alike in so many ways. 

Losing Sunny brings up the trauma of losing Mattie ironically. Like the feelings I had with Mattie, I also wonder.... how is Sunny? Who is taking care of him? Has his body been restored and therefore able to chase squirrels and fox? So many questions and NO answers to any of them. My greatest hope is that Mattie and Sunny have been introduced to each other, that Mattie has finally got the dog he always wanted and that one day, both of them will be there greeting me on that Rainbow Bridge.  

I spent a good portion of the day working on Foundation things and then took my parents out for brunch. It is the one day a week that I don't cook. I am not sure what I like better, not cooking and cleaning or being able to see people and feel like I am a part of the world for two hours. Of course, no meal is ever complete without my dad's need for the bathroom. Today he did not make it in time, and I had a full clean up job to do in the ladies room. Literally I don't know how I make it through day after day, week after week, or month after month. I am being tested on every level and the verdict is still out on the outcome. 

Saturday, January 27, 2024

Saturday, January 27, 2024

Tonight's picture was taken in January of 2009. Mattie was struggling with how to walk again. For a while, his physical therapist, Anna, had Mattie work with a typical front facing walker. That day, she got the idea of trying a reverse walker. Mattie literally took a few steps and Anna threw her arms up in victory. Despite all the best efforts, Mattie was too debilitated and managing pain to ever walk again independently. It was a sad reality that we faced on top of coping with cancer. This frustrated Mattie on every level and contributed greatly to his depression, anxiety, and trauma. 

Quote of the day:  Your place I’ll hold, you will be missed, the fur I stroked, the nose I kissed. And as you journey to your final rest, take with you this … I loved you best. ~ Jim Willis

Last night I posted one of my favorite photos of Sunny on our lawn. It was pretty soon after we moved into the house. Whereas this photo was taken only a few days before Sunny died. In order to get to the lawn, I had to carry his back end, but I knew being outside was where he was happiest. What I learned too is as dog's get older, the fur around their eyes turns white. I do not remember that happening with the dog I had as a child, but naturally that was decades ago. Whenever I look outside now, I always envision my regal boy sitting there on the lawn. He loved is backyard so! Miss him greatly. 

Today was a royal blur. Between caregiving and Foundation work, I had my hands full. But I went out to get the mail, and I received two beautiful cards. Ironically they were from friends in Boston, from when I went to graduate school at Boston College. I met three amazing women while getting my MS in biology, and all three of these women are still a part of my life. Keep in mind I graduated from there is 1994, so it is a testament to our friendship. Their support and sentiments are greatly appreciated. I have also received lovely gifts to Door Dash too, which will greatly help on nights were I just don't have the energy to cook. I have been blessed with an amazing support network of women and all the outreach helps me get through the long days here. 

Friday, January 26, 2024

Friday, January 26, 2024

Tonight's picture was taken in January of 2009. Mattie was in the playroom with his best buddy in cancer, Brandon. Despite their age difference, these two were close and had a special friendship. By that point in time, Brandon was off cancer treatment, but came back to the hospital on a regular basis to visit with Mattie and the care team. Brandon did not live close to the hospital. It was practically a two hour trip each way, a fact that never went unnoticed by me. Days and nights were very long for us in the hospital, and Brandon knew this all too well. Which was why his visits were deeply appreciated by all of us. 

Quote of the day: Companion, friend and confidante, a friend I won’t forget. You’ll live forever in my heart, my sweet forever pet. ~ Susanne Taylor

This is one of my favorite photos of Sunny at our house. It was taken not long after we moved into the house in 2021, and Sunny was thrilled to have grass, trees, and his own backyard. He was a happy camper. I thought he looked so regal on the lawn, that I snapped this photo! There will never be another Sunny. He was one of a kind. 

My mom is pressuring me to get another dog and my answer is NO! Dogs require time and attention, and I don't have time to care for myself, much less devote time to bond with a dog. I just won't do it. 

This morning, after taking my dad to his memory care center, I came back home and picked up my mom to take her to her annual physical. I am happy to report that since my mom moved in with me in 2021, she has gained 15 pounds. Overall, she is in good shape considering her age. The doctor gave her a cognitive test, and I have to tell you..... what a joke! These questions do not accurately assess memory issues. My mom maybe able to manage the questions, but truthfully in her day to day living, she needs a great deal of support. What I am happy about is that I reached out to her rehab doctor and he has agreed to prescribe my mom in-home physical therapy, so she can work on balance. This is a major accomplishment for the week!

After the doctor visit, I drove to Mattie Miracle's mailbox and picked up a ton of mail. Of course I did not look it over carefully, and once home I noticed that I have to go back next week to see if I have to pay our annual mail box fee. Keep in mind that going to the mailbox is a 40 minute drive each way! Truthfully it never ends and I am constantly jumping from one task to the next, FRENETICALLY, that I can't think straight. I am living under constant stress, constant demands, and constant tasks. 

This afternoon I took my mom to Starbucks for her tea and snacks. While there, we ran into the local author that we have gotten to know as well as one of our neighbors. This 90 minute break was the only peace I got all day. Because once I picked up my dad at the memory care center, I got home and jumped onto an hour long Mattie Miracle board meeting. I wish I could say it ended there! NOPE. I then had to type up meeting notes, do some Foundation work, fold laundry, make dinner, serve dinner, clean it up and the list goes on!

I would like to end tonight's blog with a joke my mom's doctor told us today. He admits he would like to be a stand up comic. When you see him, you get the medicine but so much more! Enjoy...........................

3 men, a fridge, and heaven

Three men were standing in line to get into heaven one day. Apparently it had been a pretty busy day, though, so Peter had to tell the first one, "Heaven's getting pretty close to full today, and I've been asked to admit only people who have had particularly horrible deaths. So what's your story?"

So the first man replies: "Well, for a while I've suspected my wife has been cheating on me, so today I came home early to try to catch her red-handed. As I came into my 25th floor apartment, I could tell something was wrong, but all my searching around didn't reveal where this other guy could have been hiding. Finally, I went out to the balcony, and sure enough, there was this man hanging off the railing, 25 floors above ground! By now I was really mad, so I started beating on him and kicking him, but wouldn't you know it, he wouldn't fall off. So finally I went back into my apartment and got a hammer and starting hammering on his fingers. Of course, he couldn't stand that for long, so he let go and fell-but even after 25 stories, he fell into the bushes, stunned but okay. I couldn't stand it anymore, so I ran into the kitchen, grabbed the fridge and threw it over the edge where it landed on him, killing him instantly. But all the stress and anger got to me, and I had a heart attack and died there on the balcony."

"That sounds like a pretty bad day to me," said Peter, and let the man in. The second man comes up and Peter explains to him about heaven being full, and again asks for his story. "It's been a very strange day. You see, I live on the 26th floor of my apartment building, and every morning I do my exercises out on my balcony. Well, this morning I must have slipped or something, because I fell over the edge. But I got lucky, and caught the railing of the balcony on the floor below me. I knew I couldn't hang on for very long, when suddenly this man burst out onto the balcony. I thought for sure I was saved, when he started beating on me and kicking me. I held on the best I could until he ran into the apartment and grabbed a hammer and started pounding on my hands. Finally I just let go, but again I got lucky and fell into the bushes below, stunned but all right. Just when I was thinking I was going to be okay, this refrigerator comes falling out of the sky and crushes me instantly, and now I'm here."

Once again, Peter had to concede that that sounded like a pretty horrible death. The third man came to the front of the line, and again the whole process was repeated. Peter explained that heaven was full and asked for his story.

"Picture this," says the third man, "I'm hiding naked inside a refrigerator..."

Thursday, January 25, 2024

Thursday, January 25, 2024

Tonight's picture was taken on August 4, 2009. I remember this moment in time like it were yesterday. I had a phone interview today, and the reporter asked me if I could recall the day I learned that Mattie's cancer became terminal. In essence when we moved away from a cure and to end of life care. Indeed I can, in fact it is a day I will never forget. After demanding scans, his doctors finally complied and Mattie had an ultrasound followed by a CT scan that day. A mother knows best! I did not buy the notion that Mattie was addicted to pain meds or that he developed an eating disorder. Excuses I heard to explain his symptoms! This did not fit Mattie's personality. Instead, I feared the worst and unfortunately I was correct. Mattie was in terrible pain and his cancer spread to all his organs. In any case, while awaiting the test results, Mattie and I went to sit in the hospital's garden area. By the garden was this art therapy elephant filled with motivational tiles. One tile was of Curious George, designed by one of Mattie's nurses, and was dedicated to Mattie. Mattie loved to visit this elephant and his tile. Can you believe that big smile when Mattie was suffering in so much pain?! Amazing. 

Quote of the day: Before you get a dog, you can’t quite imagine what living with one might be like; afterward, you can’t imagine living any other way. ~ Caroline Knapp

Tonight's quote is so true! Before we adopted Sunny, I truly was worried that I would not be able to handle a dog. I doubted my abilities! Especially living in the city without a backyard. However, Sunny was always grateful to have a loving home and truthfully we could have lived in a cardboard box, and he would have been happy. Sunny was the perfect name for my boy, because his disposition was SUNNY!

Sunny liked to keep an eye on me. When I was working upstairs in Mattie's bedroom, Sunny wanted to make sure I did not get passed him without him knowing it. What better way to track what was going on, on both the first and second floors! Sunny was over 60 pounds and yet found a way to park himself on a step! Notice as I was snapping this photo, Sunny looked up at me. He tracked my every move, and when we first adopted him this was an adjustment, but it was something I grew to love and appreciate. 

Today was a whirlwind. I dragged myself out of bed at 7:15am. I just couldn't get up. When my dad's physical therapist got to our home, I tried to make some phone calls for my mom regarding my dad's health savings account. When I tell you this call was painful, I am not kidding. I was on the phone for 2.5 hours! I am NOT exaggerating. I went from Via Benefits, Alight, then to AT&T Benefits, followed by Warner Media, and finally back to AT&T Benefits. By the time I spoke to my dad's employer, Warner's, I told the HR person.... don't you dare transfer me back to AT&T. So literally he kept me on the line while he contacted a supervisor at AT&T who is now investigating our issue. Truthfully I felt like I went ten rounds. I had wanted to go grocery shopping while my dad's PT was here, but that wasn't in the cards. Well not until 5pm, when I pushed myself to go grocery shopping, before making dinner. 

After that harrowing call, I jumped on a conference call with a reporter from the NY Times. She contacted me because she is interested in learning more about the Psychosocial Standards of Care, Mattie's story, why we created the Standards, and the importance of bereavement care. The reporter also lost a child to cancer, so she understands the lived cancer experience. We talked about a whole bunch of things and what I have to say is even though Mattie's journey was in 2008, I can recall so much of our journey, as if it were yesterday. 

She asked me how I learned that Mattie was dying. We both have a similar experience in the sense that no doctor addressed the issue point blank with us. On August 5, 2009, we did meet with Mattie's oncologist and she told us that there were no other treatment options for Mattie. She did not say he was dying per se, but she said that we were going to start Cyber Knife (radiation) to help reduce his pain. There was a task, a to do! Which was perfect, because when I was fighting hard for over a year, being proactive and doing something was key. But to this day, I will always remember what this physician told me and I shared it with the reporter today. 

The doctor spoke to us about HOPE. She said along a cancer journey, there is always hope. Hope evolves and changes throughout the journey. In fact at each of the different stages of care, we may have hoped for something different. But she went on to say that HOPE is needed and of utmost importance at end of life. Instead of hoping for a cure, we turned our active attention to hoping that Mattie would be in less pain, and that he would die in dignity. Again, this charged us with a to do, and in those last few weeks, I kept living in HOPE until Mattie's last breath. I was his fierce advocate and protector until the end, as he died in my arms, after a painful six hour death. Mattie was given a lethal dosage of propofol, to stop his heart. His bed looked like a mind field, filled with syringes and IV pain meds, and hearing the flat line on the monitor will remain forever in my mind and body. 

The reporter asked me about the connections we have with Mattie's care team after he died. I realize our situation is not like every bereaved parent's. But in our care, when Mattie died on a Tuesday, his oncologist literally wrote me an email every Tuesday for two years after Mattie died. I am NOT kidding. In addition, we are still connected with many of Mattie's nurses, his surgeons, his social worker and art therapist. In fact, many of these individuals are personal contributors to Mattie Miracle, even today. I can't tell you how much it means that these Mattie legacy keepers remain in our lives. I attribute this to the power of Mattie, to the amazing and intense connections we made with our care team, and the respect the team had for our undying love. When the article is published, I will share it here, but what I do know is the Psychosocial Standards of Care are historic! They were our brainchild and they will forever be Mattie's legacy.... Mattie's mark on the world to help other children with cancer and their families.