Saturday, December 18, 2021

Saturday, December 18, 2021

Tonight's picture was taken in December of 2008. Mattie was recovering from his surgeries but was back in the hospital for his next round of treatment. As you can see Mattie had trouble putting on clothes, so I literally draped his pajamas around him. That day, Whitney and Lesley, Child Life Interns, came into Mattie's room to help brighten his mood. These are extraordinary women, who are compassionate, have positive energy, and Mattie really related to them. They brought with them a tray and a bunch of creative materials for Mattie to play with, and no matter how badly Mattie felt, we usually could engage him in some sort of activity. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 50,754,052
• Number of people who died from the virus: 806,211

After I got my dad up, washed, and dressed, we all had breakfast together. Then I proceeded to help my dad with his cognitive, physical and occupational exercises. Once all these things were completed, my dad was wiped out! I mean truly done for the morning. He goes to his recliner and typically rests or sleeps for several hours. This is how our mornings are MOST days.

While he is resting, we are working! There were ten big wardrobe boxes in my parent's room. We unpacked each of these boxes today! It felt like a feat. To my surprise the movers packed lamps within the clothes. It is incredible that the lamps did not break! 

The unpacked closet!

Later in the day, we drove to Alexandria to visit Mattie's memorial trees. We decorated them for Christmas. This is Mattie's official memorial tree. Those of you following the story, this is the fourth tree that was planted at Mattie's school, as the other three had issues! This is a white swamp oak that produces the most charming acorns in the fall. 

A close up of some of the ornaments. 

This is memorial tree number 3. We decorate it too. This is a yellow wood tree that was struck during a terrible storm and the tree literally split down the middle. It has made a good recovery. Any case, our joke is that Mattie has a memorial grove at his school. 

These trees are important to us and give us a venue to acknowledge and celebrate Mattie's life. After all, Mattie's ashes are not in a cemetery. They are home with us. This was our choosing, and the beauty of a tree is it provides joy, shade, and protection to countless children on the playground...... a place Mattie used to love to play in. 

We went out for an early dinner to Mattie's favorite restaurant. This is a restaurant my family has been going to together since 2005! So a long time. In fact, after each Foundation Walk, my family has dinner at this restaurant. I am telling you this because it is a known quantity. In any case, my dad HAS NO MEMORY of this restaurant at all! His decline has been rapid since I saw him in April 2021. Typically with dementia one holds onto long term memories better than short term ones. In my dad's case, this isn't true at all. He is so forgetful that he can't remember where he is in the house, how to get to the bathroom, and the line that truly brings me a chuckle is....... where did all this furniture and stuff come from? Where did the movers get it from?! We remind him the answer is..... YOUR HOUSE IN LOS ANGELES!

Friday, December 17, 2021

Friday, December 17, 2021

Tonight's picture was taken in December of 2008. Pictured with Mattie is Tricia. Tricia was Mattie's favorite nurse. So much so, that one day while in the middle of the hospital hallways, Mattie started screaming for Tricia. When she came running over, she was sure something was wrong with him. To all of our surprise, he called her over because he had to let her know then and there that he "loved her." It was a priceless moment in time. This is the beauty of Tricia, she has no trouble getting down on her hands and knees and working with her patients. She meets them where they are and I am so glad Mattie had such a special person taking care of him (and us!). 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 50,616,347
• Number of people who died from the virus: 805,254

Perhaps I am tired, perhaps I just need a break, either case, I am feeling overwhelmed. Somehow I can't get anything accomplished, other than one task after the other. In my email inbox today one of my mom's friends sent an email about the fact that he is a grandfather four times over this week. Naturally I should be happy for him, as this is a blessed event and addition to his family. But frankly, I am not in the kind and charitable mood at the moment. All I could think about is..... wow, do you really think I need to hear this right now? There are so many reasons why I don't want to hear about this, and if you have been reading my blog long enough, you probably can surmise my list. 

It is a mixed blessing hearing information like this. Naturally friends have highs and lows and therefore to be a friend you really need to embrace these moments and walk their journey with them, yet the journey I walk isn't a common place experience that the majority of people survive. Thankfully so, because I have a feeling if every parent in our world lost a child to cancer or other terminal disease, it would be an even sadder place than it currently is. While this friend is celebrating his new addition, this weekend, I am planning on how to decorate the trees that memorialize the memory of my dead son. Quite the comparison. My loss isn't a one time occurrence, NO! It is a yearly, monthly, and daily issue that walks with me each day of my life. Mattie's loss signifies the end of being a mom, and the hopes ever of being a grandparent. So no right now is probably NOT a good time to be sending me emails about marriages, pregnancies, and so forth. 

Thursday, December 16, 2021

Thursday, December 16, 2021

Tonight's picture was taken on December 20, 2008. Mattie was home recovering from his surgeries and that day his art teacher surprised him with this wonderful wreath. A wreath made out of paper, and on each leaf was a message or creation from each kindergarten student at Mattie's school. It truly was a work of art and very thoughtful. For years after Mattie died, Peter and I had this wreath. We hung it on the inside of our front door. When this photo was taken, Mattie needed a hospital bed and our living room became a make shift clinic complete with IV pole, commode, wheelchair, and so forth. It is a time in my life I will never forget. It is etched forever in my memory as was the chaos all around me at home. Chaos that continued on in our home for about three more years after Mattie died. It took a lot of energy, strength and courage to work through all the piles of things that Mattie collected and were given to him during his cancer treatment. Literally Mattie got boat loads of stuff daily for over a year. You would be amazed how quickly things pile up when you don't have the time to evaluate, organize, and purge things. I am now a product of this experience, and I no longer can relate to clutter and lots of things. When I am surrounded by chaos, I feel internally anxious, angry, and unstable. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 50,475,878
• Number of people who died from the virus: 803,271

I got up at 5am today in order to get myself ready, my dad ready, strip the beds my parents were temporarily sleeping in, did about five loads of laundry, made breakfast and then greeted the four movers at 7:30am. As you can see the moving truck was very big and very full. It took 7 hours for the truck to be unloaded and things assembled into the house. 

My basement is about 1,800 square feet. In other words it is bigger than my town house that I moved from in Washington, DC. I have NO idea what I would have done without this space. As you can see my parents items have filled 200 boxes in the basement and the stacks are floor to ceiling. 

Boxes everywhere! I honestly have NO idea how I will manage this, keep in mind that I just completed my own move of my own. Which meant evaluating Mattie's things and dealing with those difficult decisions. If that wasn't enough, I have been moving my parents since 2018. 2018, 2020, and now 2021! I could run a packing and moving company by now. 

I would like to say that the chaos is just contained to the basement, but it is not. The BIG addition in our house, which was built by the previous owner, no longer seems big. It is packed with furniture and the lack of wall and free space has made me so edgy, I can't process this room for the next few days. I have to walk away until I am ready to deal with it. 

In addition to clutter, the movers dinged our paint on the walls. I completely understand as things are heavy, but it is another thing that set me off, given the ordeal I have been through with getting this house painted. 

Here is the highlight of my day, my dear friend sent me baked mini cupcakes. It is these surprises that perk me up and truly make me smile. As I always say, I have the best friends and Mattie Miracle supporters. 

This is what these treats look like. I can't wait to try them after dinner. I have been on my feet all day and my day isn't over yet. My dad keeps telling us he is thrilled the move is over. He has NO concept for the amount of work ahead. When we show him photos of the packed basement, his response is that the basement is big. The purpose of the photo wasn't taken to show the space, but rather what is FILLING the space. Unfortunately my dad's brain no longer works like it did and this is an adjustment for all of us. 

Wednesday, December 15, 2021

Wednesday, December 15, 2021

Tonight's picture was taken on December 10, 2008. As you can see Mattie could hardly keep his head up, but really tried as Santa and Mrs. Claus were in the room delivering presents. Of course Santa got some coaching from Mattie's art therapists and child life specialist.... so he knew all of Mattie's favorite toys. Mattie picked his head up from the pillow, thanked Santa, and then returned his head back to the pillow. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 50,341,524
• Number of people who died from the virus: 802,014

I had a fascinating experience at the grocery store. Since I have moved to Virginia, I find the closest store to me is The Giant. Ever since I moved to the National Capital region in 1994, I have shopped at Safeway. If I had my choice, I would still be a Safeway shopper. But now I have to shop where it is geographically convenient for me. I have gotten used to The Giant and what I particularly love about this store are the people who work within it. Everyone is so kind, friendly, and they all try to help. Unlike my stores in the Washington, DC area, where most people seemed annoyed to be working. 

In any case, there is a check out person at The Giant named Maria. She is one of the people there that I love because she is from New York and is spirited. This week she asked how I was.... so I told her about my trip to Los Angeles and mentioned that I moved my parents in with me. From that piece of information she told me how she cared for her mom and husband, both of whom have died. Maria immediately felt she related to me and I would have to say that this once again reminded me that caregiving and grief and loss do bond people together. It is like we talk the same language. Maria mentioned that when she was caregiving her siblings did not help at all and she felt alone and isolated. Which is not an unusual occurrence, as I know full well from my own caregiving research. She said the only person that gave her a break was her neighbor, of all people. 

With that, she took my store receipt and literally gave me her home phone number and cell phone number. She said to me that she wants to help and that I should call on her any time. Who does this now a days? I am not saying I am going to do this, but her incredible compassion was noteworthy. 

Like Maria, I too learned when Mattie was sick who I could rely on and who really could rise to the occasion to be supportive. Ironically it isn't always the people you think it will be! Which can be very startling and upsetting. Yet it is the reality and in some cases relationships never return to normal after a caregiving crisis. To this day I will never forget losing friends I had for 15+ years due to Mattie's illness. I honestly do not know why these friends abandoned our friendship, other than one told me that her family felt my situation was making HER sick. WOW, if it was making her sick, who knows what it (Mattie's cancer diagnosis) was doing to me!!!

Tuesday, December 14, 2021

Tuesday, December 14, 2021 -- Mattie died 637 weeks ago today.

Today's picture was taken on December 27, 2008. As you can see, Peter was hamming it up with Mattie. Peter was trying very hard to cheer Mattie up and to break through his depression. Mattie had very short lived moments of fun and happiness. But for the most part it was a very difficult Thanksgiving and Christmas for us. Mattie, by that point, had medical traumatic stress and unfortunately his doctors did not believe us. That was until he returned to the hospital for a check up and to continue treatment. Mattie was hysterical. He did not want any one coming near him, and forget about examining him. It was very clear FINALLY to his treatment team that there was a psychosocial problem and NOT a reaction to pain meds. 

Quote of the day: Today's coronavirus update from Johns Hopkins.

• Number of people diagnosed with the virus: 50,216,029
• Number of people who died from the virus: 799,845

I spent some time on the phone today trying to get my parent's medical and dental records transferred to my doctors. I made some headway. 

One of the things I worked on today was taking our Halloween pumpkins and transforming them into pumpkin apple soup. I have done this before, but NOT since Mattie was alive. So that is how long ago this was. Frankly ever since Mattie died, Peter and I haven't purchased a pumpkin to display at our home. That is until this year. 

Cutting a pumpkin is a workout! I forgot how difficult it was. I chopped up three out of our 9 pumpkins. 

The final product!

Monday, December 13, 2021

Monday, December 13, 2021

Tonight's picture was taken in December of 2008. Mattie's cousins came down from Boston to visit with Mattie. As you can see they were imitating.... see no evil, hear no evil, and speak no evil. What I think was particularly hysterically was that Mattie took no part in this. He was doing his own thing, he most likely took everything in, but did not want to be photographed or participate. 

Quote of the day: Today's coronavirus update from Johns Hopkins.

• Number of people diagnosed with the virus: 50,078,410
• Number of people who died from the virus: 798,416

It is the beginning of a new week here. My parents are still adjusting. My dad's needs are consistently being met, so he seems to be holding his on. I am waking him up in the morning, showering him, dressing him, giving him breakfast, and then doing his cognitive, PT and OT exercises with him. Literally all of this takes me to about noon. Then at noon, I walk Sunny and today I also had to go grocery shopping and do chores. As soon as I got back from chores, I made my parents a snack. Then hopped on a conference all, and then have been doing chores ever since. I feel like I am on a treadmill. 

In the process of trying to adjust to my new role, tasks, and demands, I realize my ability to be a friend has dwindled. I am not doing this on purpose, it is simply that I am on overload. What am I talking about? A friend of mine celebrates a birthday in December. Her birthday happened to be on the day after I arrived back in Virginia from Los Angeles. In the past I always celebrated her birthday and took her out to lunch. Unfortunately this year I did not do that, nor did I remember her birthday and write to her. Not great on my part, but I am hoping that in time, I can figure out how to balance all of this and the Foundation. Nonetheless, I know she is upset and then I feel badly in the process. 

Sunday, December 12, 2021

Sunday, December 12, 2021

Tonight's picture was taken in December of 2008. That year we didn't officially decorate for Christmas. Mainly because we were in the hospital more than we were at home. However, Mattie brought many of the items he received (from the hospital to decorate his hospital room) home. He set them up in the living room. Do notice the Christmas train. This was a Mattie tradition. We bought that train together years before, and Mattie always featured it around our Christmas tree. Though I donated many of Mattie's things, I kept the train! As it brought him great joy! The train goes around the track, Santa is the conductor, and the train plays Christmas music and puffs out Christmas smelling smoke. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 49,918,880
• Number of people who died from the virus: 797,293

I wanted to share some photos of our decorated house! This may not sound like a big deal, but for us it is HUGE. Peter and I haven't opened up any of our holiday items since 2008! Naturally I could have donated them before moving into this house, but we didn't. We kept them, and the main reason I am decorating is for my parents. I am quite sure if it were just Peter and me, we wouldn't have done this. 

If you look at the photo above from 2008 and compare it to this photo, you will notice the SAME ornaments. These are the ornaments that Mattie's child life specialist gave him to decorate the tree in his hospital room. I kept all the ornaments! They are now on our little tree in the kitchen. 

Peter went to the nursery yesterday and came home with this 7 1/2 foot Douglas Fir tree. It is beauty and a wonderful shape for our dining room. 

There are many Mattie creations on our tree. We preserved them over the years. Mattie made this photographic ornament in 2006 in his preschool class. 

In November, I was at the Hallmark store, and came across this moon ornament that read.... Love you to the moon and back. The perfect ornament that symbolizes Mattie to me. As his nickname in preschool was Mattie Moon and I always told him I loved him to the moon and back. 

In 2005, Mattie had a preschool teacher named Margaret. I LOVED Margaret. She may have been Mattie's teacher, but she became one of my closest friends. I lost Margaret in 2014 to ALS. Within Mattie's preschool class, he made many wonderful ornaments with Margaret. These laminated mittens are one of the special keepsakes. 

Mattie also made many cinnamon ornaments with Margaret. This is the only one I still have intact. 

A Mattie snowman!

Our mantle in the family room! Peter just bought this wonderful poinsettia bough, which I love. Mattie's stocking is featured in the center, as he is the center of our universe. 

Mattie and I had a Santa collection of sorts. Several of these Santas were mine from when I was a child. 

In honor of Mattie, his train is featured around our tree. 

This afternoon we went out to have a late lunch at Clyde's. Clyde's is the perfect restaurant group for us, because there is something on the menu for each of us. I have decided that we are going out every weekend, since cooking five days during the week is more than enough for me. I know I feel tired, but I did not realize how tired I actually looked until I saw this photo. 

Saturday, December 11, 2021

Saturday, December 11, 2021

Tonight's picture was taken in December of 2007. Mattie was five years old and looked and acted like the picture of health. Never in my wildest imagination would I think that 7 months later he would be diagnosed with cancer. Each Christmas Mattie got a special sweater in order to take a holiday photo. Mattie was featured on the front of our family's card. Ironically I never captured all three of us on the card, only Mattie. Mattie loved decorating the tree and also loved his Christmas train. Which he assembled around the tree. It was a tradition.

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 49,874,867
• Number of people who died from the virus: 797,121

Peter and I have NOT bought a Christmas tree or decorated for Christmas since 2008, when Mattie was diagnosed with cancer. When Mattie died, so did most of the joy in our lives. A reality most don't want to hear about, but nonetheless the fact of the matter. 

With my parents moving in, I felt it was important to decorate, as I think it helps to orient my dad to the season and it brings some festivities to winter and the cold. In other words temperatures my parents are not used to. But here's the funny part..... we had a warm snap today, and it close to 70 degrees! 

This afternoon, we took my parents to a Clyde's restaurant in Ashburn, VA. Outside the restaurant were huge nutcrackers. Another guest of the restaurant offered to take our photo, and we did it! It is naturally hard to leave behind one's routine and restaurants one has gotten accustomed to, but we are trying to make new connections and traditions here for them. I have concluded that I will cook Monday through Friday, but Saturday and Sunday, we will go out. I feel this is the best way to manage food, as I want Peter to be a part of our meals and process, and though my parents are used to eating their main meal at lunch time, I am switching this up to dinner time. Otherwise if I kept their LA schedule, we would only eat one meal a day in the afternoon (outside the house), and I would never be eating and connecting with Peter. I am determined to find the right balance and fortunately Peter and I have been through so much already, that we are good working together under the worst of conditions and chaos.

Friday, December 10, 2021

Friday, December 10, 2021

Tonight's picture was taken in December of 2007. This was 7 months before Mattie was diagnosed with cancer. Honestly there were no tell tale signs and Mattie seemed healthy and happy. It was a December tradition that we could go to the US Botanical Gardens. They have an atrium area that feels like a hot house. Which is a glorious feeling in the dead of winter. It transports you to warmer climates. Mattie loved this space and the holiday train display the Gardens set up, mesmerized him. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 49,788,804
• Number of people who died from the virus: 796,349

I set my alarm for 6:30am. However, I just couldn't get up. Maybe I was on Los Angeles time (3:30am) or just plain tired. Either case, I reset my alarm for 7am and by that time forced myself to get up. I know I have to get up because I am responsible for my dad's routine..... getting up, showered, dressed, breakfast, cognitive exercises, PT and OT exercises. 

When I am managing my dad alone, I know that before I get him up I have to prep breakfast. Because as soon as he comes downstairs, he wants to eat. IMMEDIATELY! I went to the refrigerator to prepare his fruit bowl and I saw we had no melon. I thought I told Peter to buy melon, but frankly it is possible I never sent the message. This is where my brain is these days! So I scrambled, jumped into the car and went to the supermarket to get the things I needed. Mind you I wasn't accounting for this extra task. 

I got back home, had to continue prep, and then manage my dad. Certainly the first time you do anything, it's harder. I have never showered my dad in this house before. I know the routine, as I created the routine for his caregivers, but just getting the logistics right here was challenging. 

Of course the house is a new experience for both of my parents. So it requires more guidance and direction on my part. My dad got it in his head today that he had to call his insurance broker. He started dialing and talking, but I could see he wasn't communicating effectively or tracking what was being said. So I stepped in. I am now trying to have an email dialogue with this insurance person, so that we can process the writing and keep the answers. As I know darn well, the verbal responses will be forgotten within five minutes. 

While prepping dinner tonight, the doorbell rang. I went to see who it was and through the window I could see this beautiful and festive basket. To my surprise this was a gift to my parents welcoming them to Virginia. The gift was from several of my immediate friends who continue to care and support me since 2008. I personally think this is totally amazing. It speaks to the quality of the people in my life and I truly believe they are the gifts that Mattie left behind for me. Though this gift was for my parents, it brightened up my day in an indescribable way. It reminds me that I am not alone through this next healthcare and caregiving crisis that I face. 

Thursday, December 9, 2021

Thursday, December 9, 2021 

Tonight's picture was taken on December 31, 2008. Mattie went through several food cravings while on chemotherapy. For the most part he did not want to eat at all, but there were times he really wanted something and Peter and I would jump through hoops to make it happen. That particular day Mattie wanted Chinese food, particularly shrimp! Honestly he never ate shrimp before he started treatment, but his tastes changed and and we went with it. I loved that Mattie wanted to use chop sticks and learned to use them quite well. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 49,661,145
• Number of people who died from the virus: 794,648

My day started at 2:15am. I got up this early because I wanted to shower and dress before I had to pack all our luggage up and dress my dad. Now I have to allot much more time to do anything with my parents in tow. I factor in a good extra 30 to 40 minutes. Somehow I got it all done and we were down in the hotel lobby by 4:15am, in order to meet our car pick up. Last night, I went down to the hotel lobby and brought up a luggage cart and kept it in the room with me. Which made loading luggage and getting to the lobby on time much easier. 

We had a lovely and easy car journey to the airport and our driver understood that we needed to make sure my parents were dropped off first and that I was going into the terminal with them to get their luggage checked and a wheelchair for my dad, while the driver waited for me. My parents insisted that I couldn't be on the same flight as them. That wish made sense when they were mobile, it doesn't make as much sense now. I did comply, but I knew I had to intervene at check in today. Once I got them set up, I jumped back into the car and went to my airline terminal. 

I honestly couldn't keep my head up throughout the flight. A four and a half hour flight felt like an hour. My parents landed at Dulles Airport and I landed at Washington National. Peter picked them up and I took a car service to the house. My driver was from the Democratic Republic of Congo, and was delightful. We literally talked the whole way to the house and he said I made a long car ride breeze by. He commended me for taking my parents in and mentioned that not every child would do this. 

I would like to say my evening was smoother and more restful, but it wasn't. I cooked dinner for all four of us, I unpacked for me and my dad, I did laundry, got my parents situated and got my dad ready for bed. The problem as I see it is there is no rest or down time to be had for me, as the routine starts again tomorrow morning bright and early. As my dad's wakes up and wants immediate attention, not to mention that his best hours are probably 8am to noon.