Tuesday, November 21, 2023

Tuesday, November 21, 2023 -- Mattie died 738 weeks ago today. 

Tonight's picture was taken in November of 2007. We took Mattie to Roosevelt Island that day to walk around and explore. A very typical weekend outing! That day, Mattie came across this large fruit on the ground. We later learned it was called a Crinkly Hedgeapple. At the time, we had no idea what it was, but we brought it home, cut it open and explored it further! When I see this photo, to me it is chilling. Behind Mattie in the distance was Georgetown University. However, a year later, we were actually living on that same campus and Mattie was undergoing intensive cancer treatment. 

Quote of the day: Death might appear to destroy the meaning in our lives, but in fact it is the very source of our creativity. As Kafka said, ‘the meaning of life is that it ends.’ Death is the engine that keeps us running, giving us the motivation to achieve, learn, love, and create. ~ Caitlin Doughty.

Yesterday I went for my annual eye exam. I have a condition called narrow angle glaucoma and initially this doctor monitored me every six months. Other doctors wanted to immediately operate on me. However, one of the many things I learned from Mattie's journey is to proceed with medical decisions slowly and methodically. Thankfully I have found a doctor who wants to work with me and respects my decisions. I am happy to report that my eye pressure is stable and hasn't changed from last year. I celebrate all the little blessings in my life, and sometimes it is the small wins that get me through the day. 

However, one of the many things I do not like about eye exams is the drops placed in my eyes. I do not like losing physical control of my own body and for me it takes practically the entire day for my eyes to return to normal from those drops. Yet despite seeing halos and having sensitivity to light, I had to push on in order to drive, manage my parents, and keep my house functioning. 

Tonight while having dinner, my dad had a tantrum. He can have them on occasion, in which he gets frustrated, he will start cursing and then walked away. Of course he won't get far and quickly realizes he has no idea what he is doing. So after his outburst, I encouraged him to come back to the dinner table and just as quickly as the issue arose, it also disappeared. The emotional angle of dementia presents its own challenges for me and there are many times during the day, where I have to say to either parent... let's pause to reset.

I have to say that coping with trauma and living with anxiety are things I learned first hand from Mattie's journey and death. The insights I gleamed from that nightmare give me the knowledge to help me cope with this life altering situation. Like I did in 2008, some days I take it not just one day at a time, but minute by minute!  

Monday, November 20, 2023

Monday, November 20, 2023

Tonight's picture was taken in November of 2007. This was one of our favorite family spots.... Roosevelt Island. I can't tell you how many weekends we drove to the Island, walked, explored, and talked. It was like Mattie's natural playground! The Island had everything from paths, water, rocks, and wildlife. I will never forget these adventures and the sad part about life is sometimes we do not enjoy what we are doing while we do it! There is a lack of appreciation for the small gifts in life. It is only later in life, with reflection, and other things arising, that we can look back and say.... these were actually the best times in life. I think what this tells me is it is very important to be intentionally present as we live each day. 

Quote of the day: It’s not as if our lives are divided simply into light and dark. There’s shadowy middle ground. Recognizing and understanding the shadows is what a healthy intelligence does. And to acquire a healthy intelligence takes a certain amount of time and effort. ~ Haruki Murakami

I am quite certain that people who are interested in helping or researching family caregivers are compelled to do this because of personal heartache and experiences. As I continue to read about Rosalynn Carter, I learned that her dad died of leukemia when she was 13 years old. That forced her mom into the workforce and that left Rosalynn, as a child, to help raise her siblings. So at the ripe age of 13, she learned about the art of caregiving. After reading this today, I am NOT at all surprised that Mrs. Carter became a fierce advocate for family caregivers. 

When I was in graduate school, I entered my program focused on the plight of the family caregiver. Why? Well just like Mrs. Carter, I had my own family story. My maternal grandmother had a massive stroke when I was in college. After being released from the hospital, she returned to our family home and my mom became her caregiver. She took on this role independently and then with the help of two caregivers. However, after about two years, my mom became very sick with sepsis, was rushed to the emergency room and spent two weeks in the ICU. In fact, while in college I called the hospital to get an update and my mom's nurse told me to come home because my mom was most likely dying. My grandmother's stroke was traumatic for our family, and I witnessed the ravages of this intense task on my mom. Though my mom pulled through sepsis, it took her over a year to recover, and when I came home between college sessions, I helped to care and nurse my mom back to health.

When I think about my life, it is very influenced by caring and helping others. Caregiving is just part of my DNA. I acknowledge it is hard and it can be selfless at times. When I was working on my dissertation, I conducted both a qualitative and qualitative study. Which meant not only did I assess over 100 caregivers, I also interviewed a hand full of them to get more in-depth data.  I will never forget these interviews. Keep in mind that I was a new mother at the time. I had Mattie only months before, so I was sleep deprived and juggling the stresses of being a mom. I recall being so tired between interviews, that I would put my head down on a desk to rest. With that said, I was very present in the interviews and listening carefully to each person's story and journey. Some days I would leave the agency where the interviews took place and I would be so touched, moved, and in awe of the people I had just interviewed. They were stressed and pushed to the max and yet they were committed to give 110% of their time and love to the person they were caring for! Truly these people were inspiring and at the same time broke my heart. 

Now almost 20 years later, I AM THESE PEOPLE! I am personally walking their journey with my own parents. Sometimes people ask me.... what advice did you give these caregivers? Which in essence means, what did you tell them, that could apply to my own situation?! But here's the thing. Because I came from a long line of family caregivers, even at the age of 32, I knew when interviewing these caregivers not to be prescriptive. Not to sugar coat the situation or look for a silver lining. There is great emotion that goes into the decision of caregiving and ultimately what caregivers need is to be heard. To have an outlet, and to be given the hope that things will eventually get better. Telling caregivers to take care of themselves is not a good idea! Why? Because we know this intuitively! Yet we also know that there are so many hours in the day, many tasks to perform, and the simple fact that others rely and need us. But naturally there has to be a happy medium and with the support of those closest to the caregiver, new opportunities and outlets do present themselves. 

Sunday, November 19, 2023

Sunday, November 19, 2023

Tonight's picture was taken in November of 2007. I remember this day like it happened yesterday! Mattie and I walked from our home to Peter's office. We decided to visit, as this was Peter's first job in which he was given his own office space. It was a big deal for our family and we came together to celebrate that moment. While in Peter's office, Mattie started drawing on the white board. The content is no surprise to me, Mattie was fascinated by all forms of transportation. In addition, his tell tale symbol was always the SUN!!!

Quote of the day: There are only four kinds of people in the world: Those who have been caregivers. Those who are currently caregivers. Those who will be caregivers, and those who will need a caregiver. Being deeply loved by someone gives you strength, while loving someone deeply gives you courage. ~ Rosalynn Carter

I love tonight's quote! In fact, the first half of Mrs. Carter's quote was used in Chapter 1 of my dissertation! I found her statement so meaningful as a graduate student. Now that she died today at the age of 96, I reflect on her humanitarian efforts, especially bringing awareness to mental health issues and bringing light to the stresses of family caregivers. Her caregiving efforts made a big impression on me back in 2002/2003, as I was writing my dissertation. In addition, I grew up with the Carters as a child, so when someone who is part of my history dies, it puts my life into context. 

I came across this article today, Rosalynn Carter, former first lady and tireless humanitarian who advocated for mental health issues, dies at 96. I am not sure what I expecting to read in this article, but what jumped off the page was her instrumental counsel and guidance she gave her husband in his political career and in his life. You know that famous quote that there is always a strong woman behind a great man, well in the Carter's case it was definitely true. If in doubt, this is what President Carter said in reflection of his wife's death.....Rosalynn was my equal partner in everything I ever accomplished. She gave me wise guidance and encouragement when I needed it. As long as Rosalynn was in the world, I always knew somebody loved and supported me.

I read that quote and it touched my heart. They were the longest-married presidential couple in U.S. history, and according to Jimmy Carter, he knew he was going to marry Rosalynn after their first outing. A love like that is hard to find and yet I do believe that such a strong and meaningful connection can transform and influence one's life. What I did not realize until I read about Mrs. Carter's death, was that she suffered from dementia. Dementia is a horrible disease that I find strips the intelligence and personality out of those we love. At one time, I truly thought, how difficult could this be in comparison to helping someone cope with cancer? The answer really is that they are two separate diseases, but both are devastating and both can suck the life out of the family caregiver. I would also say that losing someone to Alzheimer's is challenging, as it erodes the memories of the person you once knew and loved and it takes a lot of inner strength to find the balance for providing intense care for a parent and at the same time enabling them to have an intact level of dignity. 

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!