Saturday, November 18, 2023

Saturday, November 18, 2023

Tonight's picture was taken in November of 2008. Mattie was recovering from his second massive limb salvaging surgery. Mattie's right leg, left arm, and left wrist were operated on and therefore the only fully functioning limb was his left leg. That left leg got nicknamed, "Curious George." As you can see Mattie was able to use his foot and toes just like a hand and fingers! I am grateful we could play computer games together and we tried very hard to keep Mattie busy and entertained. But it was challenging as the room was small and of course the pain was great!

Quote of the day: To lose someone you love is to alter your life for ever. You don’t get over it because ‘it” is the person you loved. The pain stops, there are new people, but the gap never closes. How could it? The particularities of someone who mattered enough to grieve over is not made anodyne by death. This hole in my heart is in the shape of you and no-one else can fit it. Why would I want them to? ~ Jeanette Winterson.

There was an incident on Friday at my dad's memory care center. Though that was yesterday, he is still referring back to it. When I picked my dad up on Friday afternoon from the center, I could tell something was wrong. My dad's face was completely flush and as soon as he saw me, he told me that something happened and he was very upset. So I helped him to the car and he talked the whole way home! That may not sound like a big deal, but I am telling you that is MASSIVE. My dad doesn't talk much and typically when I ask him how his day was at the center, he has NO idea! That alone is frustrating because I would like to share in his day, but I have learned to just go with it. My dad is trapped in his own head and typically doesn't remember something that happened 30 seconds later. But I think Friday's incident was an emotional experience that frightened him. 

Apparently two participants at the center started fighting with each other in the lunch room. My dad claimed not to have seen the actual fight, however, he told me that his friend was punched in the stomach. My dad also saw another participant screaming, carrying on, and saying... "I'm going to kill you." I believe that statement was directed to the person starting the fight. Needless to say, my dad took the "I'm going to kill you" quite literally. Though the staff tried to reassure my dad and said they had things under control, that did not bring any peace to my dad. My dad is still so worked up about this that he doesn't want to go back on Monday. 

Needless to say, I wrote to the staff on Friday afternoon, soon after I got my dad home and settled. I wanted to know if this incident actually occurred and if so what the specifics were around it. I also wanted the staff to know that my dad is upset and feels unsafe. My dad went so far as to say..."perhaps we should call the police." The staff responded right away to my email and they told me they spoke to my dad, as they could see he observed some of what occurred, but then they assured me he participated in the rest of the day's programs without a problem. So I responded back and said that maybe true, but my dad was still quite frightened and uncomfortable, so whether he participated in the activities was irrelevant to me. 

To see the changes in my dad due to Alzheimer's Disease is quite remarkable. A once mentally strong and capable person has been reduced down to very child like behaviors. Certainly I am saddened by this huge loss and the rapid progression of the disease, but frankly given the caregiving tasks I perform each day, I do not spend a lot of time dwelling on the loss. If I did, it would be hard to function and it would also be detrimental to my dad. I am aware of these losses, they can frustrate and depress me at times, but at the end of the day, my dad is still my dad, and I accept him as he comes. 

Friday, November 17, 2023

Friday, November 17, 2023

Tonight's picture was taken in November of 2008. This was a classic scene in Mattie's hospital room! He was recovering from limb salvaging surgery and it was Friday! On Friday's the chemistry club came to the floor to entertain and educate the children. The club understood that Mattie loved their activities, so when Mattie couldn't come out of his room, they brought the activities to Mattie!

Quote of the day: No one ever told me that grief felt so like fear. ~ CS Lewis

I am proud to say that 2/3's of the items donated to Mattie Miracle's Snack and Candy Drive have been delivered this week! My friend Ann went to MedStar Georgetown in Washington, DC today and delivered our big donation! Ann is in gray and next to her is Jess, an amazing child life specialist at the hospital!

Some of the items!

Meanwhile, my friend Denise came over and visited with my mom and me. She brought homemade pumpkin muffins and dark chocolate caramels! Doesn't get better than that. I find the in the toughest hours of my life, my core group of friends are there once again to support me. We had a wonderful chat and the funny thing is as Denise was leaving, my mom said.... when are you coming back? High praise indeed. 

Thursday, November 16, 2023

Thursday, November 16, 2023

Tonight's picture was taken in November of 2008. Mattie was home from the hospital, discharged for the Thanksgiving holiday. By that point, Mattie was recovering from limb salvaging surgery, so we had a hospital bed in our living room. As you can see, Patches, or as I used to call her, Nurse Patches, was on the scene for moral support. That Thanksgiving holiday was extremely stressful, painful, and heart breaking, as it became very clear to me that Mattie had a form of PTSD. 

Quote of the day: We bereaved are not alone. We belong to the largest company in all the world—the company of those who have known suffering. ~ Clover Stroud

The highlight of my day today was my friend Carolyn came to visit us. She surprised me with flowers and pastries. Mattie Miracle themed colors too! Carolyn and I go way back to the days when our children were in preschool together. We have remained friends ever since and my supporters who came to our Mattie Miracle Walks know that Carolyn served as our raffle chair for 10 years!

As of tonight, two have already been consumed!

Carolyn picked up all the candy and snacks at my home that were designated for Children's Hospital at Sinai. She then drove and delivered them to Baltimore! I am lucky to have such devoted friends and supporters. 

Wednesday, November 15, 2023

Wednesday, November 15, 2023

Tonight's picture was taken on November 19, 2008. It was post surgery and though Mattie was struggling, look at that smile. Despite the fact that three out of four limbs were operated on, Mattie found the inner strength to have hope and to smile. He truly is a role model for all of us. 

Quote of the day: There is not a reason for everything. Not every loss can be transformed into something useful. Things happen that do not have a silver lining. ~ Megan Devine

I have been under enormous stress lately. So much so that I am having trouble sleeping and eating. In fact, within the last month, I lost ten pounds. Today I went to see a therapist. It is ironic. I studied mental health counseling, am a licensed professional and NEVER went to counseling personally. Other than graduate school experiences which were required. I even managed to cope with Mattie's cancer diagnosis and death. However, I am at a crossroads in my life and what I have noticed is that one trauma has a way of re-igniting past traumas. 

Any case, it feels very different going to counseling, when you are a professional yourself. In fact, I would say we communicated differently together than if I was a non-mental health professional. I am a bundle of anxiety and truly did not even need her guidance or direction with conversation, as I can clearly talk straight for an hour. That said, I found this individual very present, a good listener, and helped to normalize another very abnormal situation for me. I do think that in challenging times in my life, different people present themselves. People that I may not have ever expected to be there for me. 

Tuesday, November 14, 2023

Tuesday, November 14, 2023 -- Mattie died 737 weeks ago today.

Tonight's picture was taken on November 19, 2008. Mattie was in the hospital recovering from his second limb salvaging surgery. That surgery lasted over ten hours, as it involved removing bone tumors from the right leg, the left arm and the left wrist. Given that Mattie was under anesthesia for so long, his care team wanted him to use his lungs to remove any fluid that may have collected there. In any case, friends gave us this creative straw! The care team loved it because it required a lot of deep breaths and sucking. Of course this was typical! Mattie never tried something, without seeing me do it first! Which was why this photo shows me trying to drink juice, to inspire Mattie. 

Quote of the day: Feelings, and feelings, and feelings. Let me try thinking instead. ~ CS Lewis

Today was a whirlwind. It started with the lawn care folks coming at 8:30am, to shut off our sprinklers for the winter. I was juggling that while doing my morning chores and getting my dad showered, dressed, and downstairs for breakfast. After I dropped him off at his memory care center, I had to come home and try to capture Indie the cat to take her for her annual wellness check. I realized a few days ago that I did not know when the animals had their last check! Between balancing my parents and Sunny's cancer, I haven't been focused on wellness exams. In any case, both were overdue, and I began to correct this today. 

Fortunately Indie complied. I was able to pick her up and put her in the cat box. She is NOTHING like our former cat, Patches. Patches would OUTSMART us and truly put up a fight getting into a box. Indie is far more docile and compliant. She behaved and I truly appreciated her kind nature. 

When Indie and I pulled into the parking lot of the vet, I sat in the car for a little bit because I did not want her waiting potentially in a room with a lot of dogs. While we were in the parking lot, I noticed a man pull up in a SUV. He waited outside of the SUV for a while and then a team of people came out with a stretcher. I figured they were there to pick up an injured dog! Unfortunately that wasn't the case!

Truly I may never forget this sight. The man and the healthcare team picked up a dead dog, wrapped in a big blanket. Everything was covered except for the doggie's head. Truthfully this image and loss stayed with me all day. Guess what it reminded me of?! Certainly a part of me reflected on the fact that some day I will lose Sunny. NOT something I am ready to face, but ultimately seeing that body wrapped up reminded me of seeing Mattie's body in the hospital, placed into a body bag. It is a sight NO PARENT should ever have to see. So seeing his doggie and his owner today, drew me right back to September 8, 2009, the day Mattie died. It is like a record being played in my mind, and the whole song was felt again today. Including, the beauty and kindness of Mattie's health care team, who were with us every step of the way, the gentle way they washed his body after he died, and the compassion and love they showed us. In the midst of great pain and sadness, I will never forget these superhuman nurses who cared for all of us for 14 months. 

The good news is Miss Indie is in great shape! She is 8 years old and believe it or not is considered a senior. Funny since cats can live up to 20 years. I met a new vet today and she greeted me and chatted about Indie being 12! I literally stopped in my tracks and said 'NO, Indie is not 12!' Somehow her birthday was recorded incorrectly and the medical care for an 8 year old is different than for a 12 year old. Any case, I corrected the oversight. The doctor and the tech LOVED Indie. They were clearly cat people and Indie curled up in the tech's arms! It was a sweet sight. 

Monday, November 13, 2023

Monday, November 13, 2023

Tonight's picture was taken in November of 2008. Mattie worked hard to create this model magic birthday cake for Peter. It is a moment in time I will never forget. Mattie loved to celebrate Peter's birthday, which is today! I remember pre-cancer, Mattie and I would always bake a lemon cake with vanilla icing to celebrate. Like Mattie, Peter also did not gravitate to chocolate. Now 15 years later, we still have this model magic cake and it sits in Peter's office. It is a constant reminder to me of Mattie's love for his parents, his creativity, and his incredible spirit under the most dire of circumstances. 

Quote of the day: Sorrow makes us all children again - destroys all differences of intellect. The wisest know nothing. ~ Ralph Waldo Emerson

I took my mom into the city today to get her hair and nails done. If you have read the blog before, then you know I have a long standing friendship with my manicurist. I was introduced to her shortly after Mattie died. The salon I was going to at the time offered me free services because they were devastated for me by the loss of Mattie. Well this nail professional and I hit it off immediately. We are both fiery, we both are loyal to our family, and we will do whatever it takes to help those we love. Truthfully going to get my nails done is therapeutic. The funny part is for years my manicurist would call me her "therapist." Kidding of course because there is NO therapeutic relationship, just that I listen, have gotten to know her family and issues, and through this we have become buddies. 

Given my caregiving responsibilities I do not get my nails done that offer. But when I do, I love getting out of my own head and listening to my friend talk and get caught up in her life. She is an incredibly strong woman who has overcome so much in her life. I admire her. Today she was telling me about a movie she saw with her family. She did not remember the name of it, so I looked it up. It is called Radical. If I were able to go to a theater, I would see it! The radical refers to avant garde teaching methods to inspire children in Mexico. What I love about the premise of this movie is that YES INDEED, one person can transform the lives and futures of many children for the better. 

Here is a description....   In a Mexican border town plagued by neglect, corruption, and violence, a frustrated teacher (Eugenio Derbez) tries a radical new method to unleash the curiosity and potential of his students... and maybe even their genius.

Winner of the "Festival Favorite" award at the Sundance Film Festival 2023.

Trailer: https://www.radical.movie/videos/

Sunday, November 12, 2023

Sunday, November 12, 2023

Tonight's picture was taken in November of 2007. Mattie was five years old and that weekend we took him for a walk on Roosevelt Island. This is a place we ventured to often with Mattie. Mattie loved being outside, was one with nature, and particularly loved climbing the rocks on the Island. It did not matter how hot or cold it was outside, we were out there in the elements. Prior to Mattie in my life, I did not enjoy outdoor time as much. But Mattie changed all of that for me, now like him, I prefer being outside. 

Quote of the day: Part of every misery is, so to speak, the misery's shadow or reflection: the fact that you don't merely suffer but have to keep on thinking about the fact that you suffer. I not only live each endless day in grief, but live each day thinking about living each day in grief. ~ CS Lewis

Tonight's quote is brilliant! CS Lewis captured living life with traumatic loss of a child beautifully. I do live each day in grief, and can't help but dwell about living each subsequent day in grief as well. I couldn't have stated it better. The highlight of my day was walking Sunny in the woods for about an hour this morning. It is therapeutic for both of us and I believe fresh air and exercise are important for Sunny's health. Not to mention my own. 

 

The Mattie Miracle Candy and Snack Drive has been a success. Certainly we aren't inundated like we used to be (pre-COVID) with candy, but the generosity of supporters is greatly appreciated. Tonight we received a donation from a fellow childhood cancer family! I removed the family's name, but kept the lovely message!

One stuck of items, which will head to MedStar Georgetown Hospital, Washington, DC!

This stack will head to Children's Hospital at Sinai in Baltimore, MD. 

This final stack will go to the National Institutes of Health in Bethesda, MD. We have Snack and Item Carts at all three locations and thanks to supporters, we are able to keep them fully stocked! 

Saturday, November 11, 2023

Saturday, November 11, 2023

Tonight's picture was taken in November of 2007. Mattie was five years old. That day we walked down to Constitution Avenue, by the National Mall, to watch the Veteran's Day parade. Ironically this was the first and last parade we ever saw. When I was listening to the radio this morning, the commentator mentioned that THIS YEAR is the first National Veteran's Day parade on the Mall in Washington, DC. Prior years it was funded by the city, which explains why the parade was not an annual occurrence. I am so glad we experienced this event as a family and we captured Mattie in the moment. In retrospect, life was much simpler and happier then. 

Quote of the day: I could not count the times during the average day when something would come up that I needed to tell him. This impulse did not end with his death. What ended was the possibility of response. ~ Joan Didion

I was reading the newspaper the other day, and came across an article about loneliness and social isolation. So I went to the internet to read more. Here is a link to the article, if you are interested..... Loneliness or social isolation linked to serious health outcomes, study finds.

The article defines both social isolation and loneliness as.........

Social isolation occurs when someone has an objective lack of contact with other people and can involve having a limited network or living alone.

Loneliness, on the other hand, refers to the subjective distress people feel if there’s a discrepancy between the quality of social relationships they actually have and what they want.

People who experienced social isolation had a 32% higher risk of dying early from any cause compared with those who weren’t socially isolated. Participants who reported feeling lonely were 14% more likely to die early than those who did not.

The article mentions that Americans are spending more and more time in isolation and yet we don’t see it as a danger — particularly if it is by choice. People assume that it’s okay and may even be good for us to be isolated if we don’t feel lonely,” Yet data confirms the risk associated with social isolation regardless of and independent of loneliness.

Social isolation and loneliness caught my attention because I think both can easily be prevalent with intense caregiving. Naturally I am not socially isolated per se because I have a full house of people. But what happens when my primary contacts each day have dementia. It is a form of social isolation that the article doesn't account for because the kind of mental stimulation and connections I have with cognitively intact people is quite different. 

Naturally given my full days of caregiving, managing doctor appointments, paying bills, cooking, cleaning, and laundry, loneliness can be pervasive. I am not complaining as I have friends who are in contact with me daily through messaging and though I feel out of the loop, they remind me that I am important in their world. Which is lovely, especially when I don't know which way is up some days. 

What I can say is that loneliness can be a killer. It is a topic I am familiar with, as when Mattie was diagnosed with cancer, our world changed on a dime. I was unable to teach, I was unable to serve in my association leadership role, and I was unable to serve as the chair of the licensure board. My world came to a grinding halt, and instead it was replaced with living in a two by four of a hospital room, facing medical decisions and life and death issues on an hourly or minute by minute basis. The nature of my environment was socially isolating and could of produced loneliness. However, I do think the human mind and spirit adapts. I found comradery in Mattie's medical providers and in our community based Team Mattie. This group of people provided me with a protective factor on the most dire of life's circumstances. 

Though I am faced with intense caregiving yet again, the situation is different. I don't live in a hospital and the kind of daily support I received back then is not applicable in my current situation. But not unlike with Mattie's illness, caregiving can play a mind game on me  and it takes a great deal of inner strength to recognize that I am not socially isolated. All that said, I am cognizant of the toll my current situation is having on my day to day existence and my future. 

Friday, November 10, 2023

Friday, November 10, 2023

Tonight's picture was taken in October of 2008. Mattie was in his third month of treatment. It was an exciting day on the pediatric in-patient floor. A big donation of toys, games, and videos arrived at the hospital. Mattie's child life specialist, Linda, understood that Mattie thrived on having responsibility and a task. So literally Linda invited Mattie into the hospital playroom to help her sort items. Naturally with sorting also came the option of picking several toys for himself! I will never forget Linda and the amazing work she did with Mattie. They were best buddies. 

Quote of the day: The people we most love do become a physical part of us, ingrained in our synapses, in the pathways where memories are created. ~ Meghan O’Rourke.

This morning I woke up, opened my blinds and this was what I saw! Yes two bucks, locking horns, and dancing around the yard. I don't think I have ever seen this in the wild before, so I found it absolutely fascinating. 

If I told you about my morning, you would most likely say.... are you kidding?!!!! Here is a highlight:

• Fed Indie, the cat
• Tried to medicate Sunny and feed him. No avail.
• Went outside, picked up newspaper and brought trash bins back. 
• Then took a shower, got dressed. 
• Prepped breakfast for everyone.
• Cleaned Cat litter box.
• Vacuumed first floor.
• Cleaned kitchen counters.
• Went back upstairs. Woke my dad up.
• Got my dad in the shower, made my parent's bed, cleaned the bathroom, and collected upstairs trash. 
• Got my dad out of the shower and dressed. 
• Back downstairs to try to eat breakfast, while balancing my dad's bathroom needs. 
• Assisted my dad on his morning exercise routine. 
• Then went grocery shopping. 
• Came home, put groceries away, folded laundry and put it away. 
• Opened up all Amazon Gift boxes delivered to our home for the Foundation. Processed items inside. 
• Tried feeding Sunny again, and cooked him fresh chicken thighs, in hopes that would entice him to eat. 

When I was done with that, I would have loved to sit down for a minute, or actually get Foundation work done. Forget it! Instead, it was time to take my parents out to get soup. I wanted them to eat something mid-day, but nothing heavy, as I cooked dinner at home. I believe getting out of the house is important each day. At the very least it gets my parents moving, walking, and interacting with the outside world.   

I took my parents to our local Panera. There are many soup varieties, so there is something for everyone. This was the second time I took my parents to this store, and ironically the manager remembered me from the first visit. Of course given how I travel, I am a memorable sight. As I hold hands with my mom while she walks for balance, my dad uses a walker, and on my shoulder I am carrying a large tote bag filled with my dad's items and activity books, and in my hand I am carrying my dad's seat cushion. So in essence I am a traveling show. 

While at the counter today, the manager took my order. I opened up my wallet to get my Panera loyalty card and the manager saw this photo! He asked me if this was my son? I said yes. He said that his son looks just like my son. We both laughed. I told him my son's name is Matthew and he said his son's name is Adam. He asked me how old Mattie was, and I said 7. Technically that is true! He said his son is the same age and he showed me a photo of Adam. 

I know after Mattie died, when I would open up my wallet and someone commented on his photo, I would feel mortally wounded. Sometimes I would bluntly say that Mattie died, and other times, I would say nothing. It depended on my mood and how I felt about the interaction I was having! 

It has been a LONG time since someone commented on my wallet photo! This manager at Panera is so nice, and he was making conversation, I did not want to burst his bubble by telling him that my son died 14 years ago. The other issue that comes to my mind is that I am clearly not as young as this manager. His son is 7 and mine would be 21. However, he did not seem to skip a beat thinking that I had a 7 year old. Not sure what to make out of that, other than for me Mattie will always be 7, and in a way, I feel locked at the same age I was when Mattie died. Time marches on, but my mind and heart have not. 

Thursday, November 9, 2023

Thursday, November 9, 2023

Tonight's picture was taken in October of 2008. Mattie was getting admitted to the pediatric intensive care unit that day. I can tell because he was wearing real clothes. Mattie only wanted to wear pajamas when he was living in the hospital. Given all that he had to contend with, I went with his preferences! That day, we went to the child life playroom and they were decorating pumpkins! As you can see Mattie painted and decorated the pumpkin in front of him. Mattie was a big pumpkin fan and thankfully loved to create. As these artistic activities helped all of us survive the long hours, days, weeks, and months in the hospital. 

Quote of the day: Denial helps us to pace our feelings of grief. There is a grace in denial. It is nature's way of letting in only as much as we can handle. ~ Elisabeth Kubler-Ross

For the past month, I have been having trouble sleeping. I am highly anxious and feel like I am having some of the same feelings and difficulties that I did when Mattie died. I contacted my doctor yesterday and she re-prescribed medication to help me sleep. It worked in 2009/2010, but it had no effect on me last night. I was wide awake and feeling like I was in a panic. I think I finally fell asleep at 5am, just in time to get up at 6:30am. 

In any case, when I got up, I opened my bedroom blinds and was greeted by a street full of dump trucks. In addition, several of my neighbors text messaged me telling me that this chaos had begun at 5:30am. 

My neighbor, directly adjacent to me, is renovating her house and it will be quite extensive. On top of the countless other stresses in my life, I would add living in this neighborhood as high on my stress list. I haven't had a moment's peace here and living next door to a construction zone adds to the frenzy. Neighbors are upset about this construction, so no matter where I turn I am dealing with issues. 

Mid-day I took my parents out for frozen yogurt. The lady who manages the store is so nice to us, that she gave my dad his yogurt for free! While chatting over yogurt, my dad thought it was April. I tried to re-orient him by looking at the trees. He observed that they had changed colors and some had fallen off the trees. Therefore, it must be Fall. Within the last month, my dad's decline has been noteworthy. He seems more exhausted, more disoriented, and is appetite is declining. All NOT positive signs. 

At around 4:30pm, after prepping dinner, I took Sunny for a walk. Sunny has been on a hunger strike all day and refused his medications as well. So I know going for a walk helps to reset both of us. Sunny moves slowly, but I am okay with that. It gives me time to catch my breath and observe the greenery around me. 

Can you see the three deer watching us as we were walking?

This fellow was beautiful. His fur was practically a cocoa color. There was something about him that reminded me of Bambi. This was a movie I saw multiple times with Mattie. Of course neither Mattie nor I liked the part of Bambi's mother dying. It got us every time.