Saturday, March 9, 2024

Saturday, March 9, 2024

Tonight's picture was taken in March of 2009. This was what a typical physical therapy session looked like in the hospital. Pictured with Mattie were his social worker (Denise), his physical therapist (Anna), his child life specialist (Linda), and his running mate, Meg. Meg was a child life intern and she knew how to engage Mattie in his therapy sessions. What she found worked, was being Mattie's competitor. Who could do a lap down the hallway? Of course, Meg hammed it up and Mattie loved it. Mattie always won and Meg would make a big deal out of that. This may not sound like anything noteworthy, but it truly was! Walking for Mattie was difficult and painful and without Meg's diversions and energy, Mattie would have focused on the pain and would have been less inclined to walk. I will always be grateful to all these amazing women who did the extraordinary for us under the worst of circumstances. 

Quote of the day: Animals are such agreeable friends - they ask no questions; they pass no criticisms. ~ George Eliot

Sunny and me on Roosevelt Island. How I remember these walks! I absolutely loved that Island. It holds all sorts of memories of our life, with and without Mattie. It was a special place to walk regardless of the season. 

Can you see all the hyacinths popping up? I happen to LOVE hyacinths. They are happy flowers and their fragrance is beautiful. They are a sign that spring is upon us. They were planted last year in this exact location and when I looked out the window today, they immediately caught my attention. They are a circle of hope. 

This morning I truly did not want to get out of bed. But by 7am, the cat was knocking her head against my bedroom door. Literally it sounded like we were having an earthquake. It was my cue to get up! My dad's physical therapist came over today and though I felt pressure to get my dad showered, dressed, and downstairs by a certain time, her visit broke up a very long day. Remember I am surrounded by people who have dementia all day. So a fresh perspective and someone to talk to makes a big difference to my day. 

Before the therapist came over, my dad had a large bowel movement. I figured we were done for the morning. However, around 20 minutes into my dad's physical therapy session, I heard him moaning. I jumped up because I knew exactly what that meant. Of course he did not make it to the bathroom in time, so I had a big clean up job to do while the therapist waited. I am quite certain dementia and irritable bowel syndrome are a hateful combination. Keeping my dad clean and his skin intact are full time jobs. 

For the past two days I have had pain in my left ear. First it started with a fluttering sound and now it feels like pressure/fullness in my ear! I was beginning to wonder whether I was getting an ear infection and then I focused on my head. Naturally I have been having migraines for weeks and with migraines can come ear pressure. Triggers of migraine ear pressure include sleeping issues, anxiety, stress, and depression. So I fit the bill for all of these things, and frankly it is amazing that I don't have more physical ailments. My head is like a compass. It always alerts me to how the rest of me is feeling. Given the intense headaches I have been suffering, I am clearly not okay. I will be starting my migraine rescue medication and it is my hope I get some relief from this ear issue. 

Friday, March 8, 2024

Friday, March 8, 2024

Tonight's picture was taken in March of 2009. Mattie was home between hospital admissions and that day my college buddy, Dave, sent Mattie this 3-D puzzle of sea creatures. This was our first 3-D puzzle we ever did and Mattie absolutely loved it. Mattie gravitated to puzzles at an early age and I can't tell you how many we did together over the years. I can't tell you how much every gift and item sent to Mattie over his entire cancer journey meant to us. Some days, a gift was the only bit of happiness we could provide Mattie. It wasn't just the tangible gift itself, but it was the intangible outcome of the gift that is most memorable to me. Because these gifts provided diversions, moments where we could just be ourselves.... not a family dealing with childhood cancer, and of course these gifts reminded us that we had a whole community behind us. 

Quote of the day: If there is a heaven, it’s certain our animals are to be there. Their lives become so interwoven with our own, it would take more than an archangel to detangle them. ~ Pam Brown

Based on Sunny's shape, I can tell this was probably the first winter we had together. That day we walked down to the National Mall and took Sunny on a snowy adventure. I can't tell you how many times we walked this Mall during COVID and over the years. It was our city backyard! 

I was sent this photo today by text message. There is a national conference going on in New Mexico. This is a conference we used to attend all the time prior to COVID and before taking on my role as a caregiver. In fact when I think about my former life, it seems like a lifetime ago. My life has changed dramatically and definitely not for the better. I truly never thought after Mattie died, that things could get much worse. I have learned that they can and they do. 

In any case, through Mattie Miracle, I have gotten to know many of the leaders of psychosocial care in the country. Which is how I received this photo today. Lori wanted me to know she was thinking of me and that Mattie Miracle is very present at the conference. This slide was presented by a medical doctor out of Pittsburgh. I have never met this doctor, and yet look who's up on the screen.... Mattie and Mattie Miracle. When Lori sent this to me, she basically said that the Psychosocial Standards of Care have such a huge range of interest around the country and they represent the beauty of Mattie and my vision. 

I can't tell you how much this photo and Lori's commentary meant to me today. I will cling to it because despite how I am feeling emotionally, I can never forget the impact that Mattie Miracle has and continues to make in the world. No matter how down and out I may be, Mattie and his legacy will always be number one in my life. Mattie serves as the guiding light and my compass on how I lead and manage his Foundation always and forever. 

Thursday, March 7, 2024

Thursday, March 7, 2024

Tonight's picture was taken in March of 2009. I can tell that Mattie was admitted to the hospital that day. The tell tale sign was he was wearing clothes. Mattie refused to wear clothes in the hospital and instead wore pajamas regardless of the time of day. However, when we were home, Mattie would wear clothes by day. So any time I see photos in which Mattie was in the hospital wearing clothes, I know this was a change over day. I most likely took this photo because Mattie was getting an infusion of his chemo. See the red stuff?! That was doxorubicin. I will never forget the first time seeing this chemo, because the natural instinct is red is bad or signifies danger. By that point in the treatment process, Mattie was no longer scared by the IV machine or the chemo, and simply was sitting in his wheelchair watching a video on the TV. 

Quote of the day: I wanted to spend the rest of my life with you; but instead I am deeply honored knowing you spent the rest of your life with me. ~ Camille Marcotte

It was another full day here. My dad had his physical therapy session at home and overall I am concerned by his level of exhaustion. If I did not get him up and moving and doing things, he wouldn't! He would sleep the day away. I am grateful to have a team of therapists working with him and that my mom is also open to therapy. 

Mid-day before taking my parents out for lunch, I went to our backyard to pick up sticks and branches. I swear I just did this days ago. In any case, I filled up another big blue garbage bins of branches and debris. I now can say that I have cleaned up all piles around the property! It is a labor. But it got me outside, in the sunshine, listening to the birds, and I have to say it may have been the best thirty minutes in my week. 

When I got back home this afternoon, sure enough my dad's insurer send us an envelope with four bills inside. Truthfully I wanted to scream! I have been dealing with his insurer now since December. I got all the documentation in hand before I called them and I was ready to do battle. But it turns out the only amount we owed was $15, and I learned that their system has now caught up and accurately shows we have paid all the premiums. Honestly it only took four months for this miracle! 

Later this evening, I got a text message from my neighbor who wanted to talk. She is having health problems, so I went over for an hour to hear her story, to try to offer moral support, and I also am evaluating her doctor to see if he is the best and most qualified person in our area to help her. This is my nature. If someone has a problem, I try to be there to help and offer support. Perhaps to a fault! However, I have learned a very valuable lesson in life in 2023. Not all people deserve our help or kindness and because of this horrible experience, I have to be careful moving forward helping people I don't truly know. It is sad, because this goes against my inner nature, but my life has been so transformed and not for the better, that I have learned a very bitter and painful life lesson. 

Wednesday, March 6, 2024

Wednesday, March 6, 2024

Tonight's picture was taken in March of 2009. Mattie was home between treatments and we were playing in his bedroom. By that point in his journey, his bedroom was practically floor to ceiling..... filled with toys, gifts, and you name it! In addition, there was an aero mattress on the floor as well, because one of us had to sleep in the room with Mattie at all times. As he sometimes needed help in the middle of the night, and given he was attached to IVs, he needed support and supervision. As you can see, Mattie received a knight's costume that day, and he put on all the gear and was showing me his knightly moves. 

Quote of the day: He is my other eyes that can see above the clouds; my other ears that hear above the winds. He is the part of me that can reach out into the sea. He has told me a thousand times over that I am his reason for being; by the way he rests against my leg; by the way he thumps his tail at my smallest smile; by the way he shows his hurt when I leave without taking him. (I think it makes him sick with worry when he is not along to care for me.) When I am wrong, he is delighted to forgive. When I am angry, he clowns to make me smile. When I am happy, he is joy unbounded. When I am a fool, he ignores it. When I succeed, he brags. Without him, I am only another man. With him, I am all-powerful. He is loyalty itself. He has taught me the meaning of devotion. With him, I know a secret comfort and a private peace. He has brought me understanding where before I was ignorant. His head on my knee can heal my human hurts. His presence by my side is protection against my fears of dark and unknown things. He has promised to wait for me… whenever… wherever – in case I need him. And I expect I will – as I always have. He is just my dog. ~ Gene Hill

Today marks the second month or eighth week since Sunny died. Tonight's quote says it all! Gene Hill captured the beauty of a dog. Dogs are incredible companions, who love us unconditionally. They are our world, and we are theirs. Sunny loved shaking paw to hand and he could easily stand up on his hind legs and we could dance together. I need Sunny more than ever now and it is amazing how his presence is deeply missed and how he filled our home with love and devotion.

It was another red letter day here, on top of so many. I live in absolute chaos, stress, emotional upheaval, and with constant grief and pain. Truthfully it is a testament to me, because I don't know how I get out of bed in the morning. I never get a break from the emotional pain, because even if my mind should clear for a second, I have my mom around to remind me of how bad things are, how unhappy she is, and how this shouldn't be what her life looks like at this stage. I take on her pain, my dad's pain, and my own.... all by myself!

Each Wednesday I see my therapist. I started seeing her in December. As I always say, she is on borrowed time. She tries to be prescriptive with me, and she presents me with certain analogies that from my perspective are off base. I have no problem telling her either. But tonight she started on me about the importance of allowing my friends to help. That if I do this, I will feel better about the nightmare I am living. Honestly???? What planet is she living on!?

I stopped her mid-sentence and told her that when you are dealing with trauma and shock, the last thing you want to add to your equation is a group of people. I then took her back in time to when Mattie died. It was a time in which I was absolutely raw. I did not know if I would make it to through the next minute, much less the next day. I recall having to socially isolate myself then, out of protection. I felt the world did not understand me and I did not understand the world. It took time to allow myself to regain strength, courage, and stability, in order to allow myself to be vulnerable in the presence of others. Trust me, not all people can handle the raw emotion associated with grief, loss, and trauma. That is part of it, and the other part of it is that when traumatized it is hard to hear about other people's lives, their stories, and truthfully their more "normal" existence. I recall right after Mattie died, how painful it was to hear about friends talking about their children. Certainly this is a natural conversation, and friends should be able to share these important moments with me, and yet I just couldn't!

This is where I am at once again! I know all the signs, and all the feelings, because I am not a stranger to trauma and shock. How am I going to manage my current existence? How do I cope? I am not sure, but what I do know is I am constantly putting out figurative fires on a daily basis, which makes it hard to cope, function, and even to have the will to exist. 

Tuesday, March 5, 2024

Tuesday, March 5, 2024 -- Mattie died 753 weeks ago today.

Tonight's picture was taken in March of 2009. That day, the child life playroom at the hospital was having its official ribbon cutting ceremony and party. The playroom was sponsored by Toys R Us, and of course with that, came their mascot, Geoffrey the giraffe. Mattie was very energized that day, which didn't surprise me because the playroom was crucial to our existence within the hospital. The hospital room was confining and isolating, but when we went into the playroom, there were usually activities, games, or outside stimulation to be found. As you can see, Mattie and Geoffrey were pals and Mattie was honored to hold the big scissor to cut the big ribbon at the ceremony. 

Quote of the day: Sunflowers are adaptable, Violet had told me not long ago. You plant them somewhere, and they'll figure out how to grow. They'll come up in the rich loam of rivers as easily as in arid, poor dirt. The worse the soil, the bigger they flower. They're scrappy as hell. ~ Marta Molnar

I was sent this beautiful quote today. I truly needed it because my spirits are very low. The sender of this quote wanted me to know that I am just like the sunflower... scrappy as hell! Since Mattie's diagnosis, the sunflower has become my flower. It symbolizes Team Mattie in my mind, after I received countless sunflowers during Mattie's cancer journey. Now when I see these flowers, it reminds me of love, compassion, and community. But perhaps in this season of great despair, I have to visualize them as symbolic of me. 

My Yankee Doodle Dandy! Sunny's groomer absolutely LOVED him. With the seasons, she would take themed photos of him. Maybe all groomer's do this, I don't know! All I know is I am so glad Mandy did! This was one of my favorites! What a beautiful boy and spirit. 

With that said, I do think Mandy was unique. She would bake homemade cookies for her pet clients, and every Christmas, would make a handmade ornament for Sunny and give us a fleece blanket. She was special and she loved her Sunny Bunny!

This morning, I hardly could get out of bed. I am congested with a head cold. The pressure in my head is excruciating. No matter how I feel though, I have to keep moving. If I don't nothing in my house would function. At 10am, my parent's therapist came to evaluate them, to extend their physical therapy sessions. At the end of the sessions, the therapist turned to me and said.... your parents are doing so well because of YOU (me). I thanked him and I told him that I try. He then stopped me and said... you do more than try! He provided physical therapy evaluations to many patients over his 40 years in the business. Therefore, he wanted me to know that not all his patients, my parents age, are doing as well. 

I know the extent of my role, the daily tasks I perform, and the fact that I rarely sit still because I am juggling constant demands and needs. That said, I truly appreciated hearing this lovely feedback from a therapist. It was a day of juggling computer issues, appointments, phone calls, and making sure throughout this that my parents are taken care of. What I have concluded today is that life is not fair, and it takes great fortitude to find a way forward to face each day. 

Monday, March 4, 2024

Monday, March 4, 2024

Tonight's picture was taken in March of 2009. Mattie was in his element. He was in the child life playroom and was busy with a science experiment. Mattie loved hands on learning and I was so grateful that Mattie's child life professional always had creative ideas to keep Mattie's mind and hands engaged and busy!

Quote of the day: Nobody can fully understand the meaning of love unless he’s owned a dog. A dog can show you more honest affection with a flick of his tail than a man can gather through a lifetime of handshakes. ~ Gene Hill

When only a Sunny hug will do! He was a love. Of course Indie was in the mix too. Since Sunny died, I would say Indie's neediness has increased ten fold. I have no doubt she misses the Sunman too!. 

It has been a long day for me. It is 10pm and I am still working. So truthfully I am at a loss for words tonight. 

Sunday, March 3, 2024

Sunday, March 3, 2024

Tonight's picture was taken in March of 2009. Mattie was getting admitted to the hospital and was waiting in the outpatient clinic until a bed was available upstairs in the unit. Mattie had a request while waiting for a big pretzel. I truthfully had no idea where this request came from, as Mattie typically wasn't a pretzel fan. Thanks to the amazing community support we had, Team Mattie activated and within a short period of time, a pretzel showed up in front of Mattie. I can't tell you how grateful I will always be to Team Mattie, because when I was trapped in the hospital, I was unable to leave Mattie's bedside to grant his requests. Clearly our Team always had us covered. 

Quote of the day: You do not own a dog. You have a dog. And the dog has you. ~ Chelsea Handler

Within our neighborhood is a wonderful woods walking trail. It is the perfect trail for me because it lines the community and I can't get lost. Trust me, this is important, as I have a very poor sense of direction. 

Sunny absolutely loved walking in the woods and I absolutely loved watching him take in all the sights and sounds around us. It was a special experience having a walking partner. Since Sunny died, I have yet to go on a walk. It just doesn't interest me. 

For the last month, I have been working on Mattie Miracle's Walk website. I am thankful to be connected to one of their tech people, who I have gotten to know over the years. Technology isn't my strong suit and truthfully it is very anxiety provoking to me to be managing everything in my life alone. However, as of this afternoon, I made the website go live. I will still be testing it and tweaking it over the next week, but I am proud to have gotten this far. 

Later today, I took my parents out to brunch. We go to the same restaurant every Sunday. Everyone there practically knows us! So much so, that several servers and managers come over weekly and chat with us. In fact, today two managers sat with us and we got to hear about some of the issues and problems they are facing. I would like to say this is unusual, but even when I was a child, people  felt comfortable talking to me. Some may say this is my gift. Perhaps, but I think the greatest gift we can give to people in our lives, is to truly listen, to be truly present, and not to judge the content being expressed. In any case, even within the few short minutes I spoke to these two individuals, they commented that they felt so much better after our interaction. My life is a mess and my future is very uncertain, but despite my own horrors, I try not to let this affect how I treat and interact with others.