Saturday, September 24, 2022

Saturday, September 24, 2022

Tonight's picture was taken in September of 2007. Mattie was five years old and that weekend the Embassy of Sweden was having an open house, with lots of activities for children. Since it was so close to our townhouse, we could easily walk to it. Outside the embassy was this giant chair. I helped Mattie up on it and I snapped a photo. After Mattie died, whenever I would walk Sunny passed the embassy, I thought of this moment in time. 

Quote of the day: There is no right way to grieve; there is only your way to grieve and that is different for everyone. ~ Nathalie Himmelrich

Today feels like a blur. I got up at 6:30am and hit the ground running. My dad's friend was coming over to visit at 1pm and then I was going to serve an early dinner at home. But I assure you trying to get myself together, my dad up, washed and dressed, get my parents downstairs for breakfast, start laundry, run to the farmer's market and then finish prepping dinner was a royal feat. By the time 1pm rolled around, I felt thoroughly worn out. 

I clearly know how drastically my parents have changed, but it takes it to a whole new level to see their decline through someone else's lens. What Peter and I have concluded is that we have to be a part of all conversations, because without us, it is actually difficult for them to entertain anyone anymore. It is sad, even someone like my dad's friend who they have known for 40+ years. Despite all we have going on, there was a bit of Mattie Miracle colors at our table today!

Overall, I feel that it is very hard for people to understand my role as a full-time caregiver. However, once a person actually observes what I am juggling, then I do see a greater understanding or acknowledgment of what I am talking about. Things were busy for me today, I did not know if I was trying to talk, serve, cook or what. So I never took photos. Only photos of our island set up for my dinner buffet. 

At 2pm today, I used Facetime to call a mutual friend of my dad's and our visitor from England. We were on Facetime for about an hour! The person we called worked with my dad and is very engaging and fun to talk with. So conversation flowed, or at least it did for me. My dad fell asleep for most of the call and my mom was trying to follow along. 

Today's menu:

• flank steak marinated overnight in red wine, worcestershire sauce, soy sauce, etc
• carrots (fresh from the farmer's market) in a ginger sauce
• arugula salad with homemade raspberry-basil vinaigrette
• twice baked mashed potatoes
• fresh fruit platter and sorbets

The highlight of my day today was receiving a big package in the mail for the Foundation's item drive. In the box was this lovely message, from someone we never met! 

Friday, September 23, 2022

Friday, September 23, 2022

Tonight's picture was taken in September of 2007. Almost 11 months before Mattie was diagnosed with cancer. Peter was teaching Mattie about rowing, being comfortable on a boat, as well as learning how to fish (catch and release). Mattie caught a catfish in the Potomac River. Right before they threw it back in the water, Peter photographed the special moment. As you can see Mattie was very pleased by his prize!

Quote of the day: Grief is not a disorder, a disease or a sign of weakness. It is an emotional, physical and spiritual necessity, the price you pay for love. The only cure for grief is to grieve. ~ Earl Grollman

Peter got home last night at 1:30am, after running around and picking my dad's friend up at the airport. John is from England and made this long trip to see my dad. At first we were going to host John at our house, but then I took stock at our daily schedule and told John that it wouldn't be fair to have him here. Instead, he should stay closer to the city, so he has more flexibility and access to public transport. Nonetheless, Peter is taking on the majority of the hosting, as he is shuttling back and forth from the hotel to our house and gave John a five hour walking tour of the city today. Here they are at the Lincoln Memorial! 

Before we moved to Virginia, Peter and I lived only blocks away from all the major memorials and sights of the city. It was a very vibrant place to live and ironically Peter chose to park the car today at our old address in Washington, DC (and even bumped into one of our long time neighbors). That way I knew the car would be safe, secure, and Peter and John would be minutes away from all the sights. 

My goal was to get work done while my dad was at his memory care center. But that never worked out. Instead, I had to go to the post office, get gas for the car, and get some last minute items at the grocery store. I am cooking a dinner at home for John tomorrow, so I had lots to prep, because I honestly can't do this when my dad is at home. I marinaded flank steak, I made mashed potatoes, made a raspberry basil vinaigrette for an arugula salad, and also put together a fruit platter. I will do the rest tomorrow, but I know there would be NO WAY I could get a dinner done when managing both of my parent's needs. 

Needless to say I am frustrated and need the time to think, as I have to put together a PowerPoint presentation shortly, because I have been asked to be part of a webinar. The topic is about the importance of physical activity in childhood cancer. NOT a topic I ever had to present before, so prepping a first time presentation is NEVER easy. My head feels scattered and my body and spirit are exhausted. With that said, for the next several days we will be entertaining John and my hopes is that this stimulation will be beneficial for my dad. Time will tell. 

Thursday, September 22, 2022

Thursday, September 22, 2022

Tonight's picture was taken in September of 2007. That day we went over to Zachary's (Mattie's best friend from kindergarten) house. Visiting Zachary was his former nanny, Sara. Sara just had a baby and she came to introduce all of us to him. To me this photo will always be priceless. I love how the baby was looking at Sara and how Mattie was looking at me. Mattie enjoyed meeting and holding the baby and was very gentle with him. It was very touching to observe. Mattie and I were both close to Sara, as she was an excellent nanny and became a friend of ours over the years. I can't tell you how many countless playdates Mattie and Zachary had together, and therefore that meant that Sara and I spent a lot of time chatting and getting to know one another. 

Quote of the day: I will never forget the moment your heart stopped and mine kept beating. ~ Angela Miller

It was another fun day in paradise. I had to get my dad up early and to his physical therapy appointment. If I leave the house, rest assured that my mom wants to go with us. So getting her moving in the morning is like herding cats. She gets up at 5:30am, every day. I honestly have no idea what takes her four hours to do upstairs. But in comparison I can get myself up, showered, dressed, downstairs to make breakfast, vacuum the first floor, then return upstairs to wake my dad, get their bed made, shower and dress him and bring him downstairs, while she is still upstairs doing who knows what! I could hope that she will rise to occasion and help out and do something. But I gave up on that months ago. Whatever her illness is, it has impacted every aspect of behavior. As a result both of my parents focus primarily on themselves. There is little room for anything else other than their needs. 

I went to therapy with my dad, and of course his therapist added three more exercises to his routine. A routine that is like pulling teeth with him at home. With the therapist, he is compliant, but at home I have to push him to get anything done. I can't just hand him a list of his exercises, or even photos of his exercises and ask him to do them! He won't, nor can he follow written or pictorial directions. Therefore the only way to get him to do exercises, is to do them with him. Which of course is labor intensive and requires my time. 

After his session, I took my dad back downstairs to meet up with my mom, who was having tea in the hospital atrium. It did not take long from that point on for me to have a meltdown. I am quite certain that my parents look at their current situation and think I have nothing better to do than care for both of them all day. Afterall, I do not have a paying job outside the house. In their minds, I am not missing any opportunities or missing deadlines and other deliverables. True, I do not report to an office, and I am not a doctor, nurse, or you pick a profession. Nonetheless, before they moved in, I was very busy and the Foundation has been my full-time job since 2009. I may not receive a dime for any of my work, but I consider it important and I also believe the Foundation has done great work. These accomplishments do not occur by osmosis or by magic. There is no appreciation for that and between that and my current level of exhaustion, I can easily implode and start screaming. I honestly can start screaming wherever I am and I don't care whose listening. 

Does screaming accomplish anything or evoke change? The quick answer is NO! But I do think there is an emotional component to screaming and it helps for me to expend energy that causes me internally to feel angry and frustrated. 

On another note, Sunny went back to the vet today for a follow up ultrasound. The good news, at least preliminarily, is that Sunny seems to be responding to his new chemotherapy. His tumors have remained stable in size and haven't increased or multiplied. I take whatever good news we can get and I am so happy that Sunny appears to be feeling better than he has for a while.  

Wednesday, September 21, 2022

Wednesday, September 21, 2022

Tonight's picture was taken in September of 2007. Mattie was five years old and it was his FIRST day of kindergarten. Though we were rushing to get out the door and in the car (keep in mind that in Mattie's kindergarten class, we were the only one commuting from the city, everyone else was from Northern Virginia), I wanted to capture this moment in time. I honestly thought I would have many MORE first days of school to come with Mattie. Thank goodness I took this photo, because I know you really don't get the chance to do something again! 

Quote of the day: When a child is born, it is the mother’s instinct to protect the baby.  When a child dies, it is the mother’s instinct to protect the memory. ~ Unknown

I woke up today feeling more stable than yesterday. I am still tired, but my head isn't spinning and I don't feel nauseous. One blessing. While getting breakfast together today, there was a knock on the door. It was our electrician at 8am. Bob was with us from 8am to 2:30pm. Gives you some idea for the magnitude of issues. Bob has been an integral part of our house since we bought it. In June and July of 2021, Bob and his team practically spent the summer in the house on a daily basis, because the whole thing needed to be rewired. 

So today I was juggling Bob, breakfast, and then getting my dad up, washed and dressed. Peter took my dad to the memory care center for a few hours, and I hopped on a conference call with Notre Dame University. They have a research institute that wanted to talk more about the Standards of Care and how they could be integrated into practice at a hospital they are working with in Mexico City. In between this conference call, Bob shut the power off several times. My computer was going on and off. It seemed to match the internal chaos in my head. 

Early this afternoon, I took my mom to see the doctor. My mom's physical therapist has been on me to get her examined, as my mom's wrist and thumb have been bothering her. I figured it was arthritis, but today, I put an end to the debate. 

We got to the office and this was my sight. NO ONE was around, the desks were abandoned and the door was wide open. Another older woman was sitting in the office and she told me her appointment was for 12:45pm, and it was 1pm with no one in sight. So I literally stormed back there until I found a live human being. Honestly! This looks like a safety issue, especially since they have access to private health data. 

The doctor, who I have nicknamed "Dopey" examined my mom's hand and feels it is not arthritis, but tendonitis. So Tylenol and icing of her hand was recommended. Not to mention keeping away from anything heavy or taxing to this hand in physical therapy. 

Tomorrow is a busy day. My dad has a colleague that he has known for 40 years who is coming from England to Washington, DC to visit. He feels this maybe the last time he gets to see my dad, and doesn't want to miss this opportunity to spend time with him. A very lovely and thoughtful visit. Initially I was going to host him in our house, but given the various needs of my parents I felt this wouldn't be fair to a guest. In addition, we live in the suburbs, not close to public transportation or National tourist sites and monuments. So my dad's friend is staying at a hotel and we will meet for four dinners while he is here. At one time I would have felt guilty about not hosting him, but I am well aware of the fact that I am doing the best I can, and also changing the routine is complicated and upsetting to my parents. 

Tuesday, September 20, 2022

Tuesday, September 20, 2022 -- Mattie died 677 weeks ago today. 

Tonight's picture was taken in September of 2008. That week we took Mattie to New York to visit a major cancer institution there. I will never forget this moment in time because we waited HOURS, and I mean like six to be seen by this orthopedic surgeon. When our turn finally came up, his assistant told us that the doctor was rushing out to an engagement that evening and couldn't give us more than five minutes. I was livid, both because we made the trip from Washington DC and the simple fact that we entertained a 6 year old for six hours waiting for this doctor's arrival! When the doctor finally walked into the room, he was a clueless wonder and started talking about Mattie's aggressive cancer and the lack of hope right in front of Mattie. I stopped the doctor from talking and removed Mattie from the room. I will never forget this horrific doctor (who wore a bow tie) or how poorly this major cancer institution treated us.  

Quote of the day: The loss of a child is the most terrifying place for me to go. ~ Nicole Kidman

Last night as I headed to bed, I felt sick to my stomach. I couldn't tell if it was something I ate or a migraine coming on. I tried to wait it out in hopes that my stomach would settle down. It didn't! So at 11:30pm, I got out of bed, came downstairs and got my prescription for nausea. Thankfully within an hour it kicked in and I fell asleep. When I woke up this morning, I just did not feel right. My head was pounding and I still felt queasy. I was literally taking deep breaths and trying to manage it because I had to make breakfast, get my dad up, showered, and dressed. I did do it! However, by 11am, I knew I had to go lie down. I rarely give into pain and feeling tired, but I am also acutely aware of the fact that I am sickly tired and if I don't stop and get rest, this whole house will implode. 

From 11am to 1pm, I fell asleep on my bed. It was delightful. I just tuned everyone else out. I popped up at 1pm, because I promised my parents I would take them out for frozen yogurt. Otherwise, I honestly would have stayed in bed for the day. That is how depleted I feel. 

Getting my parents up and to the car sometimes feels like a feat. When I got them to the frozen yogurt store, I showed my dad all the flavor choices and then sat them both down, while I got yogurt for all three of us. Because I am tired, I accidently put chocolate chip toppings on my mom's yogurt instead of mine. This of course did not go over well, and when I got the yogurt to my mom, I had to pick off every chip. 

Meanwhile, my mom has been complaining of hand pain for several weeks now. She had this pain a few months ago, and I actually took her to urgent care for an x-ray of the right hand. It turned out to be arthritis, which is what I suspect is true now for the left hand. Nonetheless, I have tried writing to her doctor and even called to talk to him on Friday. Three times I have reached out and each time I got NO response. Today I wrote a nasty gram to the office manager asking him if this is what I can expect from concierge service with Dr. Dopey (my nick name for him!). The doctor called me back today and I am taking my mom in tomorrow. My mom's physical therapist recommended hand therapy and the doctor refuses to prescribe it because he thinks this will only exacerbate her condition. So it's another day in paradise.

Monday, September 19, 2022

Monday, September 19, 2022

Tonight's picture was taken in September of 2008. Mattie was in the hospital and that day was visited by Jude, one of the music volunteers. Mattie loved all the music folks and Jude made learning about music fascinating. Why? He came with props! Meaning he would come to a hospital room with a little red wagon filled with all sorts of instruments. Mattie could pick an instrument, learn about it and even play it. That day he selected the rain stick! 

Quote of the day: Happiness is beneficial for the body, but it is grief that develops the powers of the mind. ~ Marcel Proust

My mom had a physical therapy session today. While in therapy, she hit her hand on the parallel bars and started bleeding. I don't go anywhere without Band-Aids and have a first aid kit in my car. I cleaned her up and back to therapy she went. 

After her session, we went out to lunch at the mall. I honestly couldn't believe what was on display! Well this photo was seasonally appropriate, as it was Halloween and fall themed. But look below!

It is September!!! You couldn't tell this inside this department store. To them it was Christmas time. Christmas in September! I noticed one shopper came in and was literally screaming when she saw these trees! She felt it was too early. 

Though I absolutely agree with the woman screaming, I felt strangely attracted to the ornaments and trees. Maybe because of the feeling holidays evoke! I just don't know. But I do believe that we live in a society that can't appreciate living in the moment, so instead, we are going to blend it holidays all together or speed it up the entire process. 

The whole first floor of the store was decorated! 

White trees, green trees, ribbons, ornaments, reindeer, and santa!

Santa on his sleigh!

A tree filled with Wedgewood!

These Santa themed plates come from Italy, Vietri to be specific. I really loved them. 

Loved the bears, but was looking for the third one (as I expected the three little bears on display). 

Sunday, September 18, 2022

Sunday, September 18, 2022

Tonight's picture was taken in September of 2008. That day, Mattie's "girlfriend," Charlotte came to hospital to visit him. A pediatric intensive care unit is not for the meek, yet Charlotte came often to visit her friend. It truly was remarkable, because I know this environment scared most adults. But this to me speaks to the power of friendship. Mattie's favorite nurse, Tricia, understood the importance of socialization for Mattie and even though she had to access Mattie's IV lines, she did it in a way that gave both Mattie and Charlotte space. Mattie and Charlotte were watching Scooby Doo together and it was a peaceful moment in a day full of chaos. 

Quote of the day: The weird, weird thing about devastating loss is that life actually goes on. When you’re faced with a tragedy, a loss so huge that you have no idea how you can live through it, somehow, the world keeps turning, the seconds keep ticking. ~ James Patterson

We have Darwin's survival of the fittest happening in our own backyard. I can honestly handle fox, deer, and raccoons, but SNAKES, freak me out! I have NEVER liked them. They scare me to death. Even as a kid, I remember in grade school, when a naturalist was walking around holding a snake, I was petrified and leaned so far back (away from the snake), that the bench I sat on fell right over, taking all my classmates sitting with me down.

Peter snapped this photo and I am happy to report that the frog jumped and was not captured. This ugly looking snake is a checkered garter snake, harmless, but nonetheless daunting to me. 

A much better sighting in our yard. This weekend there have been many flutterbys, and I told Peter we are getting many visits from Mattie. 

Yesterday we took my parents out to eat, and the restaurant they like going to is featuring lobster this month. My dad NEVER remembers eating lobster before, so he wanted to try it. However, I knew from past experience that he isn't a lobster fan. 

I snapped this photo of my dad in anticipation of the lobster coming. I would say that food is his biggest motivator and despite how he is feeling, he always finds energy to eat.

The lobster. I have to say if I had to actually cook a live lobster or kill a live chicken, lamb, pig, or cow, I would never eat meat or seafood. 

That said, the lobster was very tasty. My dad said he is now over lobster and doesn't need to taste it again. No surprise to me. As for me I can't think of the last time I had a meal in peace. While eating with my dad, I am constantly balancing tissues, picking up his debris, and let's not forget countless trips to the bathroom.