Saturday, May 13, 2023

Saturday, May 13, 2023

Tonight's picture was taken in May of 2009. Mattie was home between treatments and that day we decided to take him for a walk to get some fresh air. Mattie's child life specialist gave him this wonderful wagon and Mattie elected to get a wagon ride. I will never forget this moment in time, because despite all that Mattie was going through, he always found a reason to smile. 

Quote of the day: Remember there’s no such thing as a small act of kindness. Every act creates a ripple with no logical end. ~ Scott Adams

Sometimes when I write my thoughts and feelings about things, it is easy to misconstrue my postings (I received a comment today from a reader who found last night's blog hurtful). Last night's posting talked about my experience going to my neighbor's grandparents day at his school. It was a day filled with many emotions and I feel it is important to remind my readers that I am a mom who lost her only child to cancer. 

In 2008, I had an amazing grandparents day adventure at Mattie's school, therefore that is etched in my mind. Being human it is hard not to compare one experience with the other, and therefore my commentary last night was reflective of that. In addition, those of you who know me well also know that I highly value the role of grandparents. I grew up with my maternal grandmother living with us and I am very influenced by her role in my life. I think more children should have the experience of growing up in a multi-generational household and the bond I share with my grandmother was very close and deep. 

Therefore when I said that I was annoyed that someone called me a grandmother yesterday, I realize that may need some clarification. How I interpreted her comment was that I look old, and given my intense role as a caregiver to my parents, I am very cognizant of the impact this is having on me physically and mentally. So the reaction is based on my own issues and insecurities and wasn't meant to be an insult to grandmothers. 

However, I also know that losing a child to cancer and then representing another child (who was the same age as Mattie when he was diagnosed with cancer) at his school is not an easy undertaking. In fact, I know many other people who may not have taken this request on. Despite my own emotions, what came first in my mind was helping a six year old child, making him feel special, and also showing him that he wasn't alone on this special day. I would have hoped that my readers understood this first and foremost about me, as I live my life in every sense of the word helping and caring for people.  

This afternoon we went to visit Dawn. She is one of our favorite servers at a restaurant we visit weekly. Dawn and I share the tragic loss of a son in common, and Dawn is absolutely fantastic with my dad. 

Dawn is going on a safari adventure with her daughter. To wish her a safe and great trip, I put together giraffe themed gifts and also in the bag was a beautiful begonia planted in a ceramic pot for Mother's Day. 

When we got to our table, Dawn decorated it for Mother's Day. There was a big butterfly balloon, two bouquets of flowers and chocolate covered strawberries! As always she spoils us and makes us feel special. The servers who take care of us weekly have become our friends and I am grateful they are part of our lives. 

Me, Peter, and Dawn!

A close up of the flowers and strawberries. When I moved my parents to Virginia in December of 2021, I had to figure out what restaurants to take them to, as they both love dining out. It is something my dad truly looks forward to. So it was at that point that we started to go to Clyde's at Reston and met Dawn. So Dawn has been a part of our lives for a year and a half. 

Dawn's cards, butterfly and flowers are all located near Mattie's Mr. Sun. Mother's Day is another holiday that poses great challenges for me. Since Dawn also lost a son, she understands these feelings all too well. 

This white bouquet was Dawn's gift to me and the one above was for my mom. 

Friday, May 12, 2023

Friday, May 12, 2023

Tonight's picture was taken in May of 2008. It was grandparents day at Mattie's school. Honestly back then, I thought there would be MANY more days like this, and yet something told me.... you better volunteer on this day so you can be a part of the festivities. THANK goodness I did, because it was our first and last grandparents day, and I would not have wanted to miss this precious moment in time. My parents flew in from Los Angeles to attend the event and I have to say that Mattie's school truly knew how to host an impressive event. This photo was taken by an easel in Mattie's kindergarten classroom. Mattie's work was hanging on the easel and he wanted to make sure we saw it. 

Quote of the day: Tell me and I forget, teach me and I may remember, involve me and I learn. ~ Benjamin Franklin

If you read last night's blog posting, then you know I had to get up VERY early this morning in order to attend Grandparents Day at my 6 year old neighbor's school. Literally I got up at 4:30am, in order to be able to feed Sunny and give him his chemo, feed Indie the cat, get myself ready, breakfast made for my parents, get my dad up... showered, dressed, and downstairs for breakfast, and laundry going. Literally by the time I had to pick up Turner at 7:45am, I was worn out. 

But I wasn't going to let my little friend down. I know from my experience with Mattie, that grandparents day is important and kids look forward to sharing their classroom and their work with a family member or special friend. 

As soon as I entered the event, I tried NOT to compare it to how Mattie's school hosts such an event. But I apologize, I was UNABLE TO! Mattie's school made the event super special, had a catered breakfast under a large tent on the field, there was a concert, and we could freely move about the classrooms and interact with all the teachers. 

Turner's school was a bit different and much more prescriptive, had bad people flow, and the manner in which they served coffee and Danish this morning was unappealing to me. Long lines also don't thrill me. The way the schedule went was we had a 30 minute greeting in the auditorium. We heard from the head of the school, then we heard from about twenty students, heard the school's motto and song, and then was prepped for how the rest of the morning would go. I thought it was interesting that family members couldn't interact with all the teachers. We were assigned to visit the home room class and ONE specialty class. In my case, my specialty class was a tour of the library.  

While in the auditorium, I sat next to one woman who had to younger than me, as she was a parent of elementary school children. In any case, she called me a "grandmother." THAT DID NOT SIT WELL WITH ME and I instantly corrected her. I may be tired, but I am NOT grandma material yet. So she ticked me off, which is how I started my day. 

The point of the day however, was to be with Turner and to take interest in his schooling and work! I guess I am the perpetual educator/learner. I went about today's assignment as just that..... to learn what my six year old friend was studying and the methods being applied. 

The homeroom teacher gave each child a checklist. We had five centers within the room that we had to visit. It was very organized as we had to visit these areas in order and we spent ten minutes in each place. After ten minutes was up, the teacher hit a mallet against a metal xylophone. That triggered the kids to instantly get quiet and to pay attention to her instructions. In any case, I got to see how the kids are learning to draw, read, count, and explore creatively. This part of the day was very interesting and it was great to see Turner's excitement over sharing these activities with me. 

Later in the morning, I visited the school's library with Turner and his class. The librarian read a cute book (about a kid babysitting his grandmother!) to all of us and then we got to walk around the library together, pick a book, and read two chapters within it. We were at the library for about thirty minutes and then headed back to the homeroom class. At that point, the teacher asked the kids to sit in a circle and then reflect on what the highlight of the day with their grandparent/friend was for them. Fortunately I have LOTS of experience with this age group, as I used to teach an art series for kindergarteners at Mattie's school. I did this for SEVEN years after Mattie died. I actually loved it and I love this age group. They are eager to learn, soak up information, and I learn from their creativity. So today's reflections did not surprise me at all. Kids feed off of one another and embellish their responses based on what the previous child says! 

After my school experience, I came home, and jumped right back into caregiving mode. I took my parents out to lunch and going out with my dad is becoming more challenging. He is fogged out, extremely tired (though he rested for hours today while I was at the school), chokes on his food, eats way too fast, and then while I am eating, he had to run to the bathroom. By the time I got him in the bathroom, he had a bowel movement already, so I had to clean him in the restroom. Most people would have been disgusted by this point and unable to continue eating. But I went back to the table, ate and had a melt down. I literally got so upset with both of my parents, I removed myself from the table for five minutes to regroup. 

Thursday, May 11, 2023

Thursday, May 11, 2023

Tonight's picture was taken in May of 2008. It was grandparents day at Mattie's school. Apparently a tradition, and an event that happens every May at the lower school. Children have the opportunity to show their grandparents around campus, meet their teachers, have a special breakfast, and hear the students perform in a choir concert. My parents came in from LA to attend this event. I also signed up to be a volunteer at the event, so that I could see what was going on! Thankfully my parents came and I also volunteered, because that was our FIRST and LAST grandparents day! 

However, the children are required to get dressed up for this special day! That was a big problem as I had NO formal attire for Mattie. I literally scrambled within 24 hours and figured it out! I knew Mattie would hate wearing a tie and jacket. But fortunately I learned about ties that zipper at the neck. This format was a God sent, because otherwise I have no idea how we would have managed this, as Mattie remained sensitive to the texture of clothing and certainly did not like being constrained from movement. 

Quote of the day: Say NO to the demands of the world. Say YES to the longings of your own heart. ~ Jonathan Lockwood Huie

Peter is plugging away in Philadelphia. He sent me today's outfit! I gave him the thumbs up! Fortunately for me, Peter returns home tomorrow night!

Tonight's quote could have been written for me. Despite all the things I am balancing, I said YES to a request from my neighbor. I took my parents out to lunch today (which on an aside was a disaster, as my dad started choking, he eats way too fast, and then developed the hiccups) and while at lunch, my neighbor sends me a text.

My neighbor has four children. Two out of the four have events at their schools tomorrow. Two different schools mind you that are in two different locations and the one set of grandparents agreed to go to the older child's event. Which meant that the 7 year old did not have a grandparent or special friend to attend his event at the elementary school. Given the photo I posted above with Mattie, I know all about how special grandparents day is at one's school, and the kids look forward to showing their family members around. Not having a special someone with you, is an isolating feeling. In any case, my 7 year old friend was crying when he learned that his grandparents wouldn't be at his school tomorrow. 

So despite the fact that I had a busy schedule tomorrow, I canceled everything. My dad won't be going to his memory care program, my mom won't be going to her physical therapy session, and I won't be able to be on Foundation conference calls. I typically don't like changing my plans, but when I know a child will be impacted, I make the effort. I have to pick up this little fellow at 7:45am to head to his school. So in order to make that happen, I will getting up at 5am, in order to make my parents breakfast, get my dad washed, dressed, and downstairs, and laundry started. All I can say is there is a special place for me. 

Now the question is how do I feel about being surrounded by a bunch of 6 year old's tomorrow, in kindergarten classrooms? I don't know, we shall see. After all this was Mattie's age when he was diagnosed with cancer. For Mattie, life changed at age 6, and yet for most children, this is just their start in life. I know I will be surrounded by happy and ambitious family members tomorrow, who have aspirations for their children. I get it, but I also get that for some of us, life did not turn out as planned.

Wednesday, May 10, 2023

Wednesday, May 10, 2023

Tonight's picture was taken in May of 2008. I remember this day vividly. It was a Friday afternoon, and Peter got off of work earlier than usual. We walked down to the waterfront and hopped on a water taxi ride. We wanted to give Mattie a tour by water, since he loved boats so much. A fellow passenger suggested that he take a photo! I am so glad I handed him my camera! Back then, pre-iPhone days, I carried a small digital camera in my purse. I wanted to captured not just major events, but every day life and activities. Like being on the Potomac River with Mattie and Peter! 

Quote of the day: It is a charming quality of the happiness we inspire in others that, far from being diminished like a reflection, it comes back to us enhanced. ~ Victor Hugo

This is day two of Peter being at a conference and meetings in Philadelphia. He sent me a photo of city hall. Peter and I went to Philadelphia years ago, when I was still in graduate school. We went there so I could attend a conference. One of the wonderful buildings that I loved is this one!

Peter sent me a photo to say hi and to also show me what he was wearing. Before he left, we put together outfits for him to wear. Certainly Peter could pick his own wardrobe, but now that he is a president, I feel it is important for him to look the part. Also many of his colleagues are women and most women (like myself) look at accessories, particularly shoes. 

After doing my usual morning routine, which included dropping my dad at his memory care center, I came back home and told my mom I was going to take Sunny for a walk. Sunny hasn't gone for a walk with me in MONTHS! 

My mom wanted to go on the walk, so I decided to drive all of us a few blocks away to where the entrance of the nature trail is located within our neighborhood. Sunny also doesn't have his endurance anymore since he started chemotherapy. So I have to walk slower and pace him appropriately. Because Sunny has slowed down so much, it makes it possible for me to hold the leash in one hand and my mom in the other. 

This deer greeted us at the entrance of the nature trail! 

I can't tell you how happy Sunny was, as he was sniffing and marking his territory. He may not be moving fast, but he still has spirit. 

My mom has a great deal of trouble walking on stones and uneven surfaces. So she held onto me for the whole walk. Her therapist seems to think that the more walking and challenges she does, the more comfortable my mom will feel about walking independently. We shall see! The verdict is out. 

The woods are glorious and today was the perfect weather day to be outside. These big green leaf like plants are everywhere! They are the Easter Skunk Cabbage. 

It is not a true cabbage, skunk cabbage is a member of a mostly tropical family of plants, the Arum family. Other well known members of the Arum family include callalilies, philodendrons, taros (elephant ears), as well as other native plants like Green Dragon and Jack-in-the-pulpit. Skunk cabbage gets its name from the pungent skunk-like odor released when any part of the plant is broken or damaged and from its large leaves which grow in a rosette somewhat like a cabbage.

This afternoon, I took my parents out for an early dinner. It was Cheryl's (our server) birthday today. Since we knew she was working on her birthday, we wanted to bring her gifts, a balloon, and several little bundtlet cakes. Cheryl takes such good care of all of us, she deserves to be celebrated. Because of my limited ability to socialize, Cheryl has become my friend. 

The birthday girl!

Tuesday, May 9, 2023

Tuesday, May 9, 2023 -- Mattie died 710 weeks ago today.

Tonight's picture was taken in May of 2008. This was two months before Mattie was diagnosed with cancer. That day we took him for a walk on Roosevelt Island and along the way Mattie found a tent moth caterpillar. Mattie absolutely loved these creatures and we never came home from the Island empty handed. At one time, we had quite a rock, leaf, acorn, and stick collection.... LIKE YOU WOULDN'T BELIEVE!

Quote of the day: In the end, though, maybe we must all give up trying to pay back the people in this world who sustain our lives. In the end, maybe it's wiser to surrender before the miraculous scope of human generosity and to just keep saying thank you, forever and sincerely, for as long as we have voices. ~ Elizabeth Gilbert

As of this afternoon, Peter is on a business trip to Philadelphia. With Peter's new job comes travel. I am very happy for Peter, as this job comes at the right time in his career. He most definitely earned this position and I am glad he seems to be surrounded by colleagues who appreciate his skills, his commitment to patients and healthcare, and his determination and drive to make any company he runs successful. 

Of course whenever Peter goes away, it is challenging for me. Not that I try to pester him while he is working, but it is always good to know my wing man is home and available. My caregiving role is all encompassing and debilitating, but I continue to plug on and take it one day at a time. 

I took my parents to the hospital today, as my mom had a physical therapy appointment. Since I can't leave my dad home alone, he was in tow. After therapy, I took them both out for lunch. Along our journey, I stopped at Mattie Miracle's post office to pick up mail. Low and behold, there were a ton of donations to pick up. 

This leads me to tonight's quote! I am quite aware of the countless acts of kindness and generosity I have and continue to receive from our support community. When Mattie was diagnosed, I will never forget meals, toys, and gifts that we received daily for over a year. Then of course when Mattie died, the support changed. It went from helping us actively grieve to helping us raise funds to keep Mattie's legacy alive through his Foundation. There really are NO words to adequately describe our gratitude, but as this quote points out, I will continually and probably always say...... THANK YOU, THANK YOU, THANK YOU for standing by us for over all these years. Our supporters are the gifts that Mattie left behind for us and we do not take this special connection you have with us lightly. 

Monday, May 8, 2023

Monday, May 8, 2023

Tonight's picture was taken in May of 2008. It was only two months before Mattie was diagnosed with cancer. At that point I had NO idea that anything was wrong with Mattie. That day Mattie came home from kindergarten with MANY tent moth caterpillars. Because this was a spring tradition, we had two jars that we used for the process. As you can see Mattie was holding one of the jars. Mattie helped me with the entire process from daily cleanings of the jars (as caterpillars produce a lot of debris) to finding oak leaves for the caterpillars to eat. Then of course once the metamorphosis process was over, we had a moth releasing event on our deck. 

Quote of the day: While we try to teach our children all about life, Our children teach us what life is all about. ~ Angela Schwindt

It was my typical day here on the farm. However, later in the afternoon, I received a text message from my neighbor. She wanted to know if two of her children could come over to have a butterfly and ladybug releasing event in our backyard! Their house and backyard are under construction and the kids said the ladybugs and butterflies would prefer a flower filled backyard! Fascinating how observant children are! My little neighbor tells me often that we have many "decorations" in our backyard. When he first told me this, I was confused as to what he meant. Then I put two and two together and realized he meant flowers and plants! 

Any case, the request immediately reminded me of the photo I took of Mattie in 2008! Releasing events were part of our spring tradition, and I thought it was very meaningful that our neighbors would come over today. Of course they don't know the exact significance of this event to us, but nonetheless, I felt that Mattie was sending me a sign! He was with me today, with each butterfly and ladybug that flew away. 

This is my six year old neighbor, Turner. He is bright, sensitive, curious, and as you can see, Sunny likes him. 

This is Caroline (age 4) and Turner. A ladybug was crawling on Caroline and she was fascinated. I love these hands on activities with kids. To me this is the best way to learn. 

The kids with their mom, Lindsay. It was a lively afternoon in the backyard and it is lovely to know that we continued Mattie's tradition. He would be very pleased. 

Sunday, May 7, 2023

Sunday, May 7, 2023

Tonight's picture was taken in May of 2008. It was grandparents day at Mattie's elementary school and my parents flew in from Los Angeles to attend the event. Since I wanted to participate, I decided to volunteer. I am SO GLAD I did, because otherwise, I would never have these memories. After I served coffee all morning under a tent to many grandparents (which I actually found fun, and several school admin were surprised by my efficiency with serving and interfacing with grandparents..... on an aside, I am not sure what that says about their previous opinion of me), I got to take my parents into Mattie's classroom to see some of his class work. My mom took this photo of Mattie and I while he was showing us his work at the easel. Mattie was very proud of his work and was eager to show us around his classroom. 

Quote of the day: When someone tells you that you have done something that has hurt them, you don’t get to decide that you didn’t. ~ Karon Waddell

This morning, I was juggling my usual chaos. On top of which I did multiple loads of laundry, as I changed my parent's linens on their bed. This is truly a labor, since they have 15 pillows on their bed. While cleaning up breakfast dishes and doing other chores, I could hear my mom making a phone call. She wanted to call one of our cousins who is in her 90s! Our cousin did not pick up the phone and it instead when into voicemail. My mom started the message by saying..... 'HAPPY EASTER!' I literally shouted out, 'you mean HAPPY MOTHER'S DAY' (for next Sunday). There are many, many glaring signs now that my mom is indeed having a memory issue. This is just one of many. 

After my mom left the message, I told her that her issue with mixed up dates reminded me of when she would call me in the past during the month of June. This problem with dates started in 2018. Back then, after our Foundation Walk in May, Peter and I would go away to the beach the first week of June. We needed that time to unwind from the stress of hosting and coordinating such a large fundraiser. All I can remember was while we were away, my mom would call me and leave me a nasty message. The message was typically left on a Sunday, and she would say.... 'I am calling as it is Father's Day and it is clear you forgot about your dad!' I found these messages so hostile, insensitive, and hurtful. So much so that I can recall them vividly even today. 

Those beach trips were my time to relax and be with Peter, and my mom couldn't appreciate that. In addition, I have NEVER ever forgotten a Mother or Father's Day in our history together! It isn't who I am. So even the inference of her comment, is way off base. It isn't like it is based in reality! In 2018 and 2019, when I received these nasty messages, I called my mom back each time and told her...... 'Father's Day is two Sundays from NOW, NOT TODAY!' She never said she was sorry for the comments or acknowledged that she was wrong. 

When I recounted this story today, my dad overheard me and asked.... 'who said such things to you?!' I told him it was 'my mom.' He then said, 'why would she say that to you?' What came out of my mouth was.....'because she is mean.' 

It is funny, this all happened five years ago or so, and yet to me it was like it happened yesterday. Can I move passed mean comments? Certainly, otherwise I couldn't do what I do each day. But I never forget them. They are housed somewhere in my mind and it is ironic how today's call to my cousin triggered this feeling. I think no matter our age and cognitive condition, it is important to acknowledge the feelings being expressed by those around us. Thankfully I can rationalize the hurt independently but there are some days that I truly don't know how I manage and find the strength to face another day.