Saturday, February 18, 2023

Saturday, February 18, 2023

Tonight's picture was taken in February of 2009. Mattie was in his hospital bed and eating a homemade baked cupcake! Why did I bring cupcakes to the hospital? Because I used them as incentives! If Mattie cooperated and participated in physical therapy sessions, he was awarded with a cupcake. Since this was something Mattie still enjoyed eating, I went with it! Chemotherapy and surgery transformed Mattie's appetite, or lack there of! By the time he died, he was emaciated. Therefore, whatever he wanted to eat, that was what we gave him. 

Quote of the day: In order to master a field, you must love the subject and feel a profound connection to it. Your interest must transcend the field itself and border on the religious. ~ Robert Greene

This morning I woke up and I thought for one minute that after breakfast, when all my morning chores were done, that I would take a nap! I never nap, unless absolutely necessary! But it came to my mind and it was truly something I had wanted to do! I am that tired! But like today's quote points out, some of the things we do and love become like part of our daily religion! 

What I am talking about, as being my daily religion, is the Foundation! So instead of taking a nap, I moved to my computer. It is that time of year when I have to turn my attention to Foundation fundraising. Which means planning our virtual Walk. I decided to devote several hours today to designing the Walk website. Of course, like any computer work, it always takes MUCH MUCH longer than you think. 

After several hours of working, I can safely say that I am not any closer to launching the Walk website. To me this is very frustrating! Of course I also work in a fish bowl. My office is right next to the family room. So I hear the TV, all conversations, and when my dad gets up and needs help in the bathroom, I have to stop what I am doing to assist him. Therefore I have to say that I HATE my office. There is no time in the day, other than when I shower and dress, that I have a minute to myself. I have no space, no down time, and never a moment when someone doesn't need something from me. 

Sometimes people ask me.... how do you get any Foundation work done given all that you are balancing? The answer is plain and simple...... Mattie. My commitment to him and our forever bond are what makes me compelled to push myself, to work at all hours to keep his legacy running. 

Friday, February 17, 2023

Friday, February 17, 2023

Tonight's picture was taken in February of 2009. Mattie was in the outpatient clinic that day and his art therapists invited him to add his handprint to a NEW pediatric sign they created for the in-patient units. The art therapists painted the sign below, but thought it would be special to feature a few handprints. Mattie said NO to the handprint. So without skipping a beat, his therapists suggested Mattie's footprint instead. Jessie and Jenny painted Mattie's foot red and then just like the Hollywood Walk of fame, Mattie's print was captured forever.

This red print on the right was Mattie's. Whenever I enter the pediatric in-patient units at MedStar Georgetown University Hospital, I see this sign. It transports me back to the day above when Mattie created this footprint. It never dawned on me back then that in the future I would only have the print and not the boy!

Quote of the day: Heroes didn't leap tall buildings or stop bullets with an outstretched hand; they didn't wear boots and capes. They bled, and they bruised, and their superpowers were as simple as listening, or loving. Heroes were ordinary people who knew that even if their own lives were impossibly knotted, they could untangle someone else's. And maybe that one act could lead someone to rescue you right back. ~ Jodi Picoult

I absolutely relate to Jodi Picoult's quote, though I must admit that I have read practically every book she has written. She writes fiction, but it is clear to her reader the extensive research she does on the given subject matter addressed in each of her novels. We have been conditioned in our society and through media and Hollywood, in particular, to think that a hero has to do something extraordinary. Something so noteworthy that it gets covered in the evening news or a movie is made about the person. 

However, we are surrounded by heroes in our lives everyday. To me it is the small acts of kindness, these unexpected gifts of humanity, that to me are truly heroic. Think about it, when you had a bad day, if someone does something nice, kind, or caring, doesn't it feel like you just won the lottery? 

Last night, Peter and I were invited to a friend's house. Our friend lost his wife to cancer in 2021. Typically I do NOTHING social because I truly can't balance it. I used to love going out for lunch or dinner with friends. But now that is impossible, as I have to worry about my parent's meals and therefore if I eat with them, I can't possibly eat again. So yesterday I took my parent's out for a late lunch and then we went to my friend's house at 6pm. I knew I had to leave by 9pm, in order to get back home to put my dad to bed. So I always feel pressure at all times. 

Our friend wanted to share two memory books he made after the death of his wife. They were very meaningful, personal, and inspirational. My goal is not to talk about the content here, but to express what it evoked in me. 

I saw photos of this couple over decades and heard about the wonderful things they did together and how they lived their life raising their family. I got to see photos of their children through the years. While observing and absorbing this content, I couldn't help but reflect how different my life is from what I was viewing. If Peter and I were asked to create such a memory book, ours would look so VERY different. 

It would look different because childhood cancer cut our lives short. While other parents will have photos of their children developing over time, our pages would be blank. I wouldn't have comparison photos to what I saw last night, nor will I ever have grandchildren photos. Somehow this hit me and has remained with me today. 

Of course while reviewing these books with our friend, I was very present, focused, reflective on his words and the work he put into creating the book, and I was committed to listening, sharing, and letting him know he was not alone.  I felt honored that he wanted to share such intimate material with us. So like Picoult's quote says, "even if [my] own life was impossibly knotted, perhaps [I] could untangle someone else's."  

Thursday, February 16, 2023

Thursday, February 16, 2023

Tonight's picture was taken in February of 2009. This was Mattie's last Valentine's Day with us. That day he received two big boxes filled with Valentine's cards from his classmates. In fact, not just Mattie's class, but all four kindergarten classrooms. In addition, Mattie got this huge lollipop as a gift! Mattie thought it was a riot, as it was as large as his head. 

Quote of the day: Never underestimate the empowering effect of human connection. All you need is that one person, who understands you completely, believes in you and makes you feel loved for what you are, to enable you – to unfold the miraculous YOU. ~ Drishti Bablani

Every quarter my dad's memory care center sends home a report on how he is doing! Frankly if you read this quarter's report, you would think my dad is an easy as pie to take care of. They keep saying that my dad is oriented to person and place, just not to time. Here is my take on all of this! My dad is very quiet, isn't physically aggressive or active, and therefore in a group setting he requires very little attention. So from their perspective, in comparison to the other participants in the program, my dad is easy. But I also think he just falls off their radar scope. 

They think he loves their program, enjoys particular activities, such as the monthly visitor who comes in and dances with participants, but the reality is actually quite different. My dad doesn't enjoy watching or seeing the dancing, he doesn't enjoy the arts and crafts and most days comes home and says that he was very bored at the center. 

Yesterday was hysterical! Peter picked my dad up from the center, and the center staff told Peter how much my dad loved the chair exercises. Even Peter was like..... 'what????!' We all know my dad prefers NO movement and one could classify him as physically lazy. Peter pushed back on the staff person and when she told Peter that my dad said the exercising was "fantastic," Peter translated that to the staff person was fantastic actually means! Fantastic is VERY, VERY sarcastic, and means whatever activity he is doing, he dislikes. We know this because we KNOW the person. 

So what may look easy to them, translates down to the simple fact that they aren't investing in my dad, like I do. If they did, then they would understand more of the reality! This situation is not unlike a teacher, dealing with many children in a classroom. The kids who stand out the most are typically the ones who call attention to themselves. 

I have told the center that I have seen a significant decline in my dad since he moved to Virginia. They disagreed with me! Which only irritated me further! Today for example, I took my parents out to lunch. On Thursdays, we go to the same place and dine with the same server every week. When we got home and I helped my dad to his chair, his first question to me was..... when are we going out to eat?! I literally lost it, as it is an hour round trip drive for me to the restaurant, and then we sit and eat for about 2.5 to 3 hours. This is a significant amount of time I devote to eating. Mostly because this is the one activity my parents like to do and it gets them out of the house. I am frustrated that my dad couldn't remember anything that we had immediately just done! He has no understanding of whether he has eatten, whether he is hungry, or if he has to go to the bathroom. 

On any given day, I feel like I am caring for a big 87 year old child. The only issue of course is there is no growth and development from week to week, just decline. It is a very sad commentary what has happened to my dad and mom, because in all reality they are no longer the parents I once knew. 

Wednesday, February 15, 2023

Wednesday, February 15, 2023

Tonight's picture was taken in February of 2009. Mattie worked that day on a bunch of Valentine's Day surprises for me in the child life playroom of the hospital. When I was allowed back into the room, Mattie gave me his hand crafted gifts. Gifts such as a crown of hearts and a decorated box that was filled with drawings and valentine's! It was a special moment and I am so glad that Mattie's art therapist captured it.  

Quote of the day: Since you cannot do good to all, you are to pay special attention to those who, by the accidents of time, or place, or circumstances, are brought into closer connection with you. ~ Augustine of Hippo

My day started with my dad pooping in the shower again. He is now doing this once or twice a week. I can't even tell you how unpleasant and noxious this is to clean up. But I know when this happens, it is the start of a long and bad day. When my dad first did this months ago, I would get upset. Now I realize this is part of the dementia process and there is no rationalizing with him. 'It is what it is!' Which has become my go to statement. 

This week I learned that my dad's fitness trainer will not be returning to work with us. He has a family member who was just diagnosed with cancer and has to relocate out of the area to be of support. I can't tell you how saddened I am to receive this news. Naturally hearing that anyone has cancer is upsetting and I wish it were different for my dad's trainer. But from my standpoint, I am frustrated because this trainer was a great match for my dad. My dad is LOW energy and will look for any avenue out of physically working hard. This trainer knew how to energize my dad and get him to comply with exercising. So I feel like I am back to square one and I know I need to find a solution because keeping my dad physically mobile is the key to him living at home. I also know my limitations. I am stretched thin and I am not going to get into a screaming match about my dad's exercise routine. Someone else has to take this on!

While at physical therapy today with my mom, I mentioned to my mom and dad's therapist about what happened to the fitness trainer. Turns out one of my dad's therapists who works at the hospital also sees patients privately. I am now working with her to see if she will come to us and get my dad on a routine. Thankfully as one door closes another opens, because I need the help. 

I love tonight's quote because it points out the importance of doing good work with others, and starting with those we come into contact with is a good place to start. We don't have to transform the world for hundreds of thousands. Just a few will do, and in the process, I believe this goodness/kindness gets transferred from those we touch to countless others. What am I talking about? 

Well in 2021, Mattie Miracle was involved in a Thrivent Virtual Take the Plunge Challenge. Thanks to that challenge, we raised $10,000. This money was used to start a new initiative, a therapy support grant program. This program is designed to award families coping with childhood cancer an $1,000 grant to access mental health services in the community. That may sound strange, because you maybe asking yourself.... doesn't the hospital provide such services to its patients?! The answer is NO and in many cases families are burdened with so many medical expenses that paying out of pocket for mental health care is prohibitive. Which is why we decided to pilot our grant program in 2022. We are working with two families. 

Today I heard from one of the families and the mom's message was beyond beautiful. Her son suffered a stroke, while undergoing cancer treatment. Imagine dealing with cancer and the side effects of a stroke?! It was recommended that this child start music therapy to help with his recovery. Great, but the family couldn't afford this and frankly no other non-profit was willing to provide funding. I learned about this family's need from a social worker listserv. Needless to say we have been paying for this young fellow's music therapy sessions since November. His mom shared with me that her son is beginning to use his arms again and is also making cognitive reconnections. She feels this is solely due to music therapy and our support brings her to tears. I will be writing about this in an upcoming Foundation newsletter, but her message reminded me that what we are doing is vital and makes a huge difference in the lives of children and their families. 

Tuesday, February 14, 2023

Tuesday, February 14, 2023 -- Mattie died 698 weeks ago today.

Tonight's picture was taken in February of 2009. This was our last Valentine's Day together. That day Mattie worked for several hours in the child life playroom of the hospital, creating cards, a gift box and this crown of hearts for me. I wasn't allowed into the playroom, as this was supposed to be a surprise. When I was called back in, Mattie gave me so many wonderful hand made gifts. I was deeply touched and his art therapist, Jenny, snapped this photo of us together. It is one of my favorite photos! It captured a typical Mattie move.... in which he would touch my nose and stare into my eyes! 

Before we moved in 2021, I disassembled all of Mattie's Valentine's gifts to me from 2009. I took bits and pieces of them and turned them into this collage. This collage is now in my office and I see it daily! 

Quote of the day: When we love, we always strive to become better than we are. When we strive to become better than we are, everything around us becomes better too. ~ Paulo Coelho

While getting myself together this morning, I was listening to the radio and they were talking about Valentine's Day. Specifically asking whether listeners thought it was a good idea to mandate that every child in school bring in a valentine's day card for each classmate. I heard both sides on this issue. Those who were for it, basically felt that they did not want any child to be left out of the holiday or excluded from not getting a card in school. Of course the other side of this debate was that forcing kids to give cards to other kids they truly don't get along with sets up a bad emotional dynamic. 

Honestly I can appreciate both sides but as I was listening to this my thought was... wow life has gotten too complicated! So complicated that we now have to think for our children, regulate their card giving, and tell them who to like and who not to like. Unfortunately we as humans gravitate to some people, but not to others! Should we be forced to treat everyone equally? I think the answer is NO! I think there is one thing to be fair, human, and kind to everyone, and quite another position that one has to go through the motions of liking everyone. Chances are that isn't natural and in fact makes us disingenuous. 

I know when Mattie went to school, we lived with this policy of everyone gets a card! Fortunately for us this was during the preschool and kindergarten years, and frankly when they are so young, I saw no problem with every little person getting a card. But as deeper emotions form with age, it doesn't make sense to give a card to everyone. I wouldn't be expected to do that in my life now, so why are we asking children to do this? Any case, if you are interested in this debate, read, "Should Kids Be Forced to Give Valentines to Everyone?"

I took my parents to a doctor's appointment today. When my dad was hospitalized in March of 2022, we met a rehab medicine doctor. He has a great team, who helped my dad considerably! So my dad has remained a patient of his. Today, my mom also became his patient. The doctor gave my mom a thorough evaluation and wants to see her every four months. He is encouraging me to change her shower routine, so that she showers with a chair and shower wand instead of standing in the shower. He says the number one way people in their 80's die is falling in the shower, breaking a hip, and failing through recovery. 

After the doctor visit, I took my parents out to lunch. We went to Mattie's favorite restaurant and sat in the bar area. My parent like this part of the restaurant, as it is more lively. On Tuesdays, we know the server who works in the bar and she treats us beautifully. She gave my mom and I roses and chocolates! She literally brought in her own rose supply and gave them to certain customers. So we felt special!

To me there are signs of spring all around us! A camellia is blooming in our garden. 

Daffodils are sprouting out!

While walking Sunny today, we saw a carpet of crocus. I am saddened that Sunny no longer walks like he used to. He used to be my strong, energetic boy, who loved to walk for miles. Now his brain wants to do it, but the body won't let him. 

Monday, February 13, 2023

Monday, February 13, 2023

Tonight's picture was taken in February of 2008. Mattie was five years old and that day he had a playdate with Charlotte, his kindergarten buddy, who he referred to as his "girlfriend." Mattie and Charlotte brought out the best in each other and that day Mattie encouraged Charlotte to jump on his bed like a trampoline. Of course Mattie not only had his mattress on the bed, but on top of the mattress was a aerobed mattress. Needless to say the kids were bouncing up and down and having a good old time. Mattie's smile says it all. 

Quote of the day: We are like islands in the sea, separate on the surface but connected in the deep. ~ William James

It was another typical day on the farm. I have learned to celebrate the small miracles, like Mattie Miracle's February newsletter (read our newsletter) went out today and I am making great progress on getting all of our donation acknowledgment letters out. In December over 75 individual donations came into the Foundation and I make a point of trying to correspond with every donor. I have about 7 more letters to write and then I can close our annual drive paperwork and then turn my attention to our annual awareness walk.  

I honestly can't believe that it is awareness walk season. It seems to come around so quickly every year, and with it comes great stress about having to raise a certain amount of funds in order to run our programs. This will be my 14th walk that I have planned, and you would think by now I would be used to this stress and pressure. Unfortunately I can't say that I am, but the Walk event on top of what I am balancing each day with caregiving makes it a really bad combination. I can't imagine how wonderful it would be not to worry about where the money is coming from each year. After all, I am not a professional fundraiser, I don't have access to consistently large donors, and whatever money we raise, we are working hard for it. Nonetheless, when motivated there is no telling what one can learn to do. The Foundation is the testament of just that!!!

Sunday, February 12, 2023

Sunday, February 12, 2023

Tonight's picture was taken in March of 2003. Mattie was 11 months old and that day we took him to the US Botanical Gardens, a place that we all loved to visit. Of course Mattie was taking one of his favorite modes of transportation... riding on Peter's back! My mom snapped this photo and to me so much was going on here. We had a kid we didn't know observing us, we had me and Mattie having a dialogue, and Peter smiling and looking content. 

Quote of the day: A thousand fibers connect us with our fellow men. Our actions run as causes, and they come back to us as effects. ~ Herman Melville

I scrambled today to get work done, because at 12:30pm, my parents were scheduled to have a phone conversation with friends. In order to make this happen, I have to be available and very present. Therefore, I stayed up last night to finish the Foundation's February newsletter and proofed it this morning as well as worked on some more acknowledgment letters from our December annual drive. What used to only take me one week to complete, now takes me MONTHS! It is VERY frustrating for my personality type, but I have learned that I have to be patient with myself, because there is only so much one person can humanly balance. 

At 12:30pm today, I expected the phone to ring. It didn't! I waited for about 45 minutes and then at that point I sent an email to my parent's friends and said we would have to reschedule the call. When the friends wrote back they explained that they received a call from someone else and therefore were unable to make a call to us. I get this wholeheartedly, things pop up! But given all that I am managing, I frankly was upset. It shows a clear lack of appreciation for what I am doing and balancing. I did not dwell too long on this, but I have made a mental note about these friends.

We took my parents out for brunch at our usual Sunday restaurant. Since we visit the same three restaurants every week, I have gotten to know servers and managers. It is my opportunity to chat with others, share stories, and not worry about cooking, serving, and cleaning. I truly no longer like cooking at home, as my dad rarely eats well at home and eats so fast, I can't keep up with him. Whether I am home or at a restaurant, my dad has me jumping and meeting his needs. At least at the restaurants I have so many other people helping me. I am very grateful to all our amazing servers. They have become an integral part of my life, and given that Valentine's Day is approaching, I made sure they each knew they are loved.