Tuesday, March 1, 2022

Tuesday, March 1, 2022 -- Mattie died 648 weeks ago today. 

Tonight's picture was taken in March of 2007. Seeing this photo reminds me that March is indeed a changeable month. It can still snow and on that day in 2007, it did. Of course Mattie couldn't resist. He went outside on our deck and created snow castles. A typical signature move of Mattie's was to add something from nature to the top of his sand or snow castles! In addition to a stick collection, we also had a rock collection going, as Mattie was into collecting all sorts of found objects. 

Quote of the day: The way I see it, if you want the rainbow, you gotta put up with the rain. ~ Dolly Parton

After almost two years of documenting COVID numbers, I have decided to return to my nightly quotes instead. Mattie's blog captures his journey, our journey with grief, our Foundation's activities, and also what is impacting our daily lives. Which is why I highlighted COVID numbers for the past two years. It documents a moment in our history. 

As many of my blog readers know, my friend Karen came down from NYC to visit last week. She left on Saturday and by early Monday morning (yesterday) went to the emergency room with an issue that is not COVID related. In any case, as I am hearing about her hospital experience and admission to a hospital unit, it reminded me of our days, months, and over a year of living in a hospital with Mattie. I still don't know how we survived this.

I am not sure why hospitals make you feel like you are entering a foreign country, but they do. What I mean about this is hospitals have their very own culture. Their own hierarchy and flow to how things work. Or DON'T work! One thing that is for certain is staying in a hospital ensures you won't get rest or a minute's peace. It's almost impossible to sleep with all the bells, whistles, and beeping of machines. Issues coming from other rooms, and of course the non-stop entering and exiting of hospital personnel through one's hospital room door. It is truly remarkable. I remember even putting up a big STOP sign in front of Mattie's door, but believe it or not, that didn't stop people from coming in. Forget about knocking..... they just walked in! It never ceased to amaze me. 

In addition to not having any peace, there is also what I call "hospital time." Hospitals work on their own time schedule, not the patient's! Patients have questions and concerns, but forget about getting immediate answers. Instead, we are at the mercy of doctors and their rounds! 

I always find it interesting hearing about a hospital experience through the eyes of someone else! Because it reminds me once again what is wrong with the system! If you are hospitalized for a long period of time like we were, you begin to blend into the dysfunctional system! You learn about hospital time, about living on little to no sleep, having access to non-nutritious or unappetizing food, and of course medical-ese! What do I mean by this? Medical-ese are medical terms and issues coming at you at a rapid fire pace from healthcare providers. I honestly wonder do doctors really think we all understand what they are saying to us, especially when we are fragile and not feeling well?  

The only thing I can say about living in a hospital for 14 months, is that I understand the system! I also understand how to work around the system, what words to use, who to use them with, and so forth. It is like I went through an educational or training program, but unfortunately at the end of my 14 months I did not get a certificate or degree..... instead, I live with the grief and long term consequences of Mattie's death. 

Monday, February 28, 2022

Monday, February 28, 2022

Today's picture was taken in February of 2008, only five months before Mattie was diagnosed with cancer. Which is hard to believe. In typical Mattie fashion, he was building all sorts of things in our living room. This plane included! He loved Legos and Tinker Toys and there was never a dull moment in our living and dining rooms when Mattie was alive. 

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

• Number of people diagnosed with the virus: 79,025,644
• Number of people who died from the virus: 949,957

Take a look at these two pals! Typically Indie and Sunny co-exist but not next to each other. Last night, they were both with us while watching TV. 

In fact, Indie joined Sunny on his bed. We were in shock, which is why I photographed the moment!

Meanwhile we received a magazine from Children's Hospital at Sinai today. One of the highlights was an honor roll of donors. I am proud to say that Mattie Miracle is at the Visionary Level!

I am not sure why I was surprised by this, maybe because I never really sit back and reflect on our donations in totality. But it is true we are most definitely at the $100,000 range for this institution. 

It was another crazy day here on the farm. My dad's occupational therapist came over this morning. She got to see exactly what I see and that is my dad is chronically exhausted. He was truly luggage and could hardly keep it eyes open. He did try to comply and walk ten minutes with her and do some arm exercises but his heart rate was high and he looked like he was dragging. 

However, even in that state, I had to get him up and to the car, because I was taking my mom for a CT scan of her lungs. Peter is busy working and I can't leave my dad home to his own devices. I think it is hysterical that the home health agency thinks I am fearful of taking my dad out! Not only do I take him out, I am dragging him to all sorts of things. 

After the CT scan, I took my parents out to lunch. I had to run back and forth to the bathroom so often during lunch, my step count was impressive! There is no peace, not a moment to just sit and do anything without jumping about. Needless to say at times I get very frustrated, very angry, and will just start screaming. That is NOT my typical way of interacting with the world, but I find that is what happens as a result of meeting everyone else's needs during every waking hour of my life. 

Sunday, February 27, 2022

Sunday, February 27, 2022

Tonight's picture was taken in February of 2008. That day Mattie's kindergarten class went on a field trip to Martha's Table in the city. Their goal was to work on assembling peanut butter and jelly sandwiches for the homeless. I signed myself up that day to be a helper and rode the bus with the teachers and the children. Naturally I snapped photos of the adventure! After the sandwich making was done, Mattie began helping to clean up. You can see him with his "girlfriend," Charlotte. They were busy at work and as always working together. They made a good team and brought out the best in each other. 

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

• Number of people diagnosed with the virus: 78,937,817
• Number of people who died from the virus: 948,397

This afternoon, after doing my morning tasks and grocery shopping, I took Sunny for a walk. Today was a good weather day and Sunny is very eager to walk in the woods all around our neighborhood. However, in August of 2019, while visiting my in-law's home in Massachusetts, I took Sunny for a walk in their woods and got VERY lost. So lost that I had to track down a hiker in the woods to help me get oriented and out of the woods. I was miles from their home and Peter had to pick me up by car. Needless to say, after that experience, I am always leery about going into the woods alone. Particularly since I have a bad sense of direction. 

There are many wonderful paths (like this one) to walk on near our home. I am eager to explore them one weekend, when Peter has time. Unfortunately today Peter was working on unpacking more boxes that belong to my parent's that are stacked in the basement. Honestly if it weren't for Peter, my parents would never get unpacked. I am just too worn out from moving myself and them, much less to unpack and deal with boxes. 

I walked on this pathway because there was only one way in and out. Making it impossible to get lost. However, at some point along the walk, I came to a fork in the path and told Sunny we had to turn around. 

Nonetheless, I look forward to exploring these woods and hopefully getting to know them just like I know Roosevelt Island. Roosevelt Island was our city haven, and now more than ever, I need a place of greenery to escape to for an hour of peace. 

Saturday, February 26, 2022

Saturday, February 26, 2022

Tonight's picture was taken in February of 2009. This was classic Mattie.... multi-tasking. Mattie was eating, drinking and building with sticks and his glue gun. Though we were living in a hospital room, there was always creativity coming from Mattie. His creations always filled the room and decorated the walls and ceilings. 

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

• Number of people diagnosed with the virus: 78,929,832
• Number of people who died from the virus: 948,200

I walked 5 miles today while in the house! It is like having a built in exercise routine, with the multitude of tasks that I do each day! I rarely sit still, sometimes I feel frenetic, and of course when and if I do sit down, I can fall asleep. 

For the past four days, my lifetime friend (Karen) has been visiting from NYC. This was the first time she saw our house and of course got to see first hand what I am reporting on the blog. It isn't easy being a part of our daily routine, but Karen managed through it and livened up our week. 

After Karen left today, I have sat down to process Foundation checks, return emails, and get my thoughts together as next week I really have to focus on preparing for the Foundation's virtual walk. 

But I am proud to report that Susan, a local high school sophomore, held a successful skating fundraiser for us last night. She raised over $1,500 for Mattie Miracle. Way to go Susan!

Friday, February 25, 2022

Friday, February 25, 2022

Tonight's picture was taken in February of 2009. You maybe asking yourself..... what am I looking at? These were ceiling tiles within the outpatient clinic of Mattie's hospital. One of which was created by Mattie. Anyone who knew Mattie, knew that this was his BIG ROACH. In fact near the roach was a tiny little person with a thought bubble over her head which read... HELP! To this day, I have NO idea what happened to this roach tile, but I suspect the clinic removed it, as it scared some of the children and parents. Not everyone shared Mattie's sense of humor. 

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

• Number of people diagnosed with the virus: 78,883,101
• Number of people who died from the virus: 947,417

My mom has been complaining of neck and shoulder pain. So two weeks ago I booked her an appointment for today at the Ritz Carlton Spa. The hotel isn't far from our home, making it very convenient. 

Karen, myself, and my mom headed to the hotel. They make things so easy with valet parking (which they comped) and everyone we met was lovely and accommodating. While my mom was getting a massage, Karen and I walked the mall, so I got my steps in! Then we literally waited for my mom by the spa's pool. It was warm and humid by the pool and if felt like a bit of an escape from our daily routine. 

After the spa, Peter drove my dad to us and we went out to dinner nearby. We went to a restaurant I haven't been to in about 20 years! Amazing no? In any case, we went to this steak house because my dad wanted a veal chop. Ironically not every steakhouse offers a veal chop, so I looked around until I found one. However, I would say that my dad doesn't really enjoy going out or the dining experience anymore like he used to, which was sad to see and experience. In fact when I cook at home, the next day he has absolutely NO IDEA what I cooked for dinner the day before. It just doesn't stay in his consciousness, which truly explains to me why in Los Angeles he literally could eat the same exact meal everyday. 

Thursday, February 24, 2022

Thursday, February 24, 2022

Tonight's picture was taken in February of 2009. I absolutely LOVE this photo and can remember it as if it were yesterday. Mattie was getting admitted to the hospital and his art therapist came to greet us. In front of us, which you can't see, was a ramp. Mattie literally wanted use to push him down the ramp, like a rollercoaster. There was NO way I was going to do that, but Jenny and I instead ran while pushing his chair down the ramp. You can see the hospital employee behind us smiling and laughing over this scene. 

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

• Number of people diagnosed with the virus: 78,790,210
• Number of people who died from the virus: 944,588

It was another early morning! My dad's physical therapist was coming at 10am. Therefore, that means I have to get up early to pull it all together. The therapist was coming to reassess my dad to get recertified to provide more sessions. In order to get qualified for more sessions, Medicare needs to see that progress has been made. Otherwise they see no reason to justify more services! So Fred (the physical therapist) pulled out my dad's data from his assessment in the beginning of February. 

In comparison to early February, my dad appears to be doing better in terms of standing up and sitting down, walking, and balancing. All good news and it shows that my daily prodding is having an effect. Despite the fact that he hates doing any kind of movement. 

I think the home healthcare company thinks I am scared to take my dad outside of the house! REALLY??? I moved him from Los Angeles for heaven's sake, which meant daily movement and even staying at a hotel. Not to mention I take him to doctor appointments and out to lunch. So fear shouldn't even be used in the same sentence as me!

This evening, Karen (my lifetime friend) is working on sorting the toiletries that have come in for the Foundation. I was going to get to it, but she started it for me. I find starting it is always the hardest part!

Get the picture! Mixed within today's deliveries was an actual gift of goodies for me! Thank you Jean for my treats as well as supporting the Foundation. 

Wednesday, February 23, 2022

Wednesday, February 23, 2022

Tonight's picture was taken in February of 2009. We were right in the middle of the hospital hallway. Not an unusual occurrence. As we did many of Mattie's physical therapy appointments right in the midst of chaos. It did not bother Mattie at all, it got us out of his room, and engaged with the world around us. Pictured with Mattie is Anna, physical therapist extraordinaire. I will never forget Anna and her amazing skills, compassion, and support. I always knew she would be honest about Mattie's situation, and I believe Mattie forced her to think outside the box as a therapist. Anna rose to the occasion every time. 

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

• Number of people diagnosed with the virus: 78,730,893
• Number of people who died from the virus: 941,866

I got up early today because my dad's speech therapist was supposed to visit at 10am. Which means that I have to get myself ready, breakfast ready, and then get my dad up. I literally have to get breakfast done before I wake him up, because after he comes downstairs he wants breakfast instantaneously. He is solely focused on that and I have found making breakfast while he waits for it is NOT a good plan. 

Any case, his therapist was 40 minutes late! Mind you I asked her to come at 11am and she said she couldn't! That she had to come at 10. So instead she showed up at 10:40. We like this therapist, but since we learned she is pregnant, today was her last visit with us, which I am not happy about. Especially since she is the ONLY speech therapist this agency has! My dad has requalified for more speech therapy services, but I have no idea who will be providing them. 

After the therapist left (and mind you during this, my dad had to run to the bathroom twice), I folded laundry and then went to walk Sunny! It was a beautiful day and I find walking is my only outlet. Ironically I purchased a pedometer for my dad the other day. It won't work for him because he is TOO inactive, so now I am using it. 

When Mattie died, our friend gave me and Peter pedometers. He wanted us to get out in nature, walk, and find a way to re-engage with the world. Honestly walking was the only thing we could do and for years I wore this pedometer until it broke. For me it is somewhat symbolic that I am wearing a pedometer once again. Sure I could use my iPhone, but I really don't like tracking my steps that way. The whole notion of a pedometer reminds me of Mattie, my time dealing with intense grief and relearning my way back into the world. Though my current caregiving role is different, it still requires a whole new mindset change and it is debilitating. 

This afternoon, my parents and I drove to Union Station and picked up my lifetime friend, Karen. I wasn't sure how this visit would go because of the dysfunction I balance. But Karen is like family to us and I don't have to worry about how she will interpret things. In any case, Peter snapped a photo of us tonight!

Tuesday, February 22, 2022

Tuesday, February 22, 2022 -- Mattie died 647 weeks ago today. 

Tonight's picture was taken in February of 2009. Mattie was in his hospital room and creating. Mattie learned how to use a glue gun early in his life. In preschool for a matter of fact. I was actually nervous for him to use this device, but he understood how it worked and never burned himself. Look closely at this photo, do you see something on Mattie's foot? It was a plastic roach! Mattie may have been ill and not feeling great, but he never lost his sense of humor, and he knew a plastic roach would get a rise out of me. 

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

• Number of people diagnosed with the virus: 78,634,064
• Number of people who died from the virus: 938,862

Today was not a good day. After 7 days, I removed the heart monitor from my dad's chest. Getting this sticky thing off was a feat, and thankfully the monitor company gave us adhesive remover. But it took me 15 minutes of work. Then at some point today I had to pack it up and mail it back to the company. I needed that like a hole in the head. 

I remained home working on one task after the other. My dad's social worker came at around 1pm and she did not leave until 3pm. I am not sure if I find the talking helpful or what. She listens to my mom and checks in with me about how things are going. But honestly there are times things are not going well, and I don't feel like these periodic check ins are helpful. On the contrary they take up my valuable time. 

My mom explained to the social worker that she basically hates her life and wants to be able to do things. However, when I reminder her that she is here, I am dealing with all of my dad's issues, and therefore she could go to an exercise class, a museum, or you name it. She says she doesn't want to do this because she would feel guilty that she is going out. Any case, the entire dialogue (which I am not reporting here), set me off and I stormed out of the house with the dog and walked for two miles. I needed to reset and stabilize. 

Then I learned that my dad's speech therapist is coming early tomorrow morning and his physical therapist is coming early on Thursday! These folks have NO idea how this impacts me, as I have to factor in getting up much earlier in order to get my dad ready in time. Despite me sharing my displeasure, I have no choice, as they are juggling things to fit us into their schedule. JUST not happy!

Also something to note..... my dad apparently got up at 4:15am to weigh himself and brush his teeth. Naturally this concerns me big time, and I am not sure why two nights in a row he has gotten up to use the bathroom, rather than use the urinal by the side of his bed. He has been using the urinal since 2020, so any change in pattern is a red flag to me. 

Made chocolate chip cookies today and......

Chocolate chip banana muffins!

Monday, February 21, 2022

Monday, February 21, 2022

Tonight's picture was taken in March of 2009. That day we came back to the hospital to attend the launching of the children's art gallery. The gallery is located on the ground floor of the hospital, and in order to get to elevators of the comprehensive cancer center, you have to pass this gallery. Mattie and I both provided art work for the unveiling reception. Mattie's contribution was a Lego model of an ideal hospital room (from his perspective) as well as both a poem (featured on the left in a black frame) and a story about his Lego hospital (featured on the right in a black frame). Mattie was proud to be a part of this gallery and to take part in the opening ceremony. 

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

• Number of people diagnosed with the virus: 78,514,209
• Number of people who died from the virus: 935,816

I got up at 6am today, in order to get my morning tasks done..... including getting my dad up, showered, dressed, and downstairs for breakfast so that I could leave the house at 8:30am. I had an appointment at Mattie's hospital for an x-ray and follow up appointment with my kidney stone doctor. 

Given that I had surgery in 2019 for kidney stones, my hope is never to experience this crisis or pain again. So I take my follow up care seriously. Therefore, there was NO way I was going to miss this appointment. Any time I am at Mattie's hospital, I walk through the Children's Art Gallery, to check out the art and of course to see if Mattie's Lego story is up! Mattie's story is still there and the blue collage next to Mattie's story was something I created for the gallery's opening in 2009! It was a pictorial depiction of what makes the ideal children's hospital! Naturally from my perspective that means you MUST have child life and art therapy! It means a lot to me that the director of art therapy keeps our creations up and side by side. Seems very symbolic to me!

Mattie's hospital is under construction. They are building a new surgery center and the whole place is congested and not user friendly. Parking is worse than ever. In fact, it is almost impossible to self park, and as I negotiated my way to the parking lot, it brought back memories, COUNTLESS ones of driving Mattie to the hospital and trying to find a place to park. I can recall walking up and down ramps of the garage with Mattie in tow in a wheelchair. My hope is that the new surgery center accounts for parking and addresses this major problem at the hospital. 

Due to construction, all the entrances and DOORS into the hospital are blocked. In some cases doors have been walled over. I swear it looks like a prison inside. Fortunately I know my way around the hospital, because if I were new to this facility now, I would be lost with no way to get outside! I showed up at the radiology department around 9am. In its usual dysfunction, I tried to check in. The woman behind the counter gave me a number and told me she would call me to assist my check in process. So I held the number and sat for 15 minutes. After which, I flagged someone else down and told him I needed help because I wasn't happy with this number system. At that point, I was escorted to a window to register for the KUB x-ray. Who knows what would have happened if I did not assert myself! 

The x-ray went smoothly, and fortunately I am mobile and flexible. After doing assessments with my dad, I realize how important it is to be able to move. My dad has many physical limitations and trying to put him flat on a table for any sort of radiology testing is close to impossible. After my x-ray, I waited in the hospital for about 90 minutes until my doctor's appointment. Initially I was going to leave the hospital and walk around to get hot tea. Given how locked down the hospital is due to construction and COVID, I stayed put. The doctor's office was running behind as well. I am NOT in love with his staff, and listening to their meaningless banter about hamburgers practically sent me over the edge. But I did get in, saw the doctor, and found that I haven't produced anymore kidney stones in a year. Excellent! One blessing for the week. 

If someone would have told me that going to a hospital for an x-ray and a doctor's appointment would be viewed as freedom and respite, I wouldn't have believed it. But this is what this adventure was for me today. 

Sunday, February 20, 2022

Sunday, February 20, 2022

Tonight's picture was taken in February of 2009. Mattie was home between hospital treatments and wanted to set up his tents and tunnels! So naturally we did and we created a way for these things to connect together. Mattie loved it. Despite his physical disability, he still had no problem scooting around on his backside!

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

• Number of people diagnosed with the virus: 78,468,292
• Number of people who died from the virus: 935,174

Peter is on his way back from Boston today. He sent me this photo of this hand made Italian tablecloth. A piece his mom wants to give to me. I naturally accepted the gift, because I think it is a work of art, but I also wanted it because I remember this tablecloth on his mom's table during family Easter celebrations. The photo doesn't do it justice, as it is a lovely spring pink. 

I have to say that it isn't easy to see our parents (mine or Peter's) start giving things away. It is not like when I give things away, instead, their items are being dispersed because they understand with age that there is no purpose on holding onto things. Instead, they would prefer someone take the items, appreciate them, and put them to good use. 

All I know is I have been seeing lots of things being donated since June of 2021, when we were digging out of our townhouse and trying to pack it up. Then I repeated the process in November/December 2021 with my parent's move from Los Angeles. Nonetheless, I find going through items and giving them away disconcerting. For me it is even worse, because I have no children to leave our items to and therefore, at times I wonder WHY HAVE ANYTHING!? 

Back to my everyday reality. My dad's speech therapist has my dad doing daily logs to keep track of his entire day (morning, afternoon, evening, appointments, phone calls, therapy sessions and to do's). It is actually a very helpful exercise, and it further confirms how significant my dad's memory loss is! On an aside, I really had no idea that speech therapists work on cognition and memory loss, but they do! This morning, just like every morning, after breakfast, I had my dad pull out his log to complete it for the end of the day yesterday before starting the current day. When you ask my dad what he did yesterday he has NO idea. Frankly he has no idea what he did a minute ago. So he needs a lot of support and coaching through the log. 

We have been watching the TV series, Heartland. It has 14 seasons and counting. We are in season 14, and my parents have watched the show from its beginning. Therefore, you would think the characters would be familiar to my dad. This morning I asked him about the Heartland episode we saw last night. He had no idea! I mean NONE! I then asked him about certain characters and he did not know who I meant. So I went over three characters with him.... a mother (Lou), daughter (Georgie), and the daughter's boyfriend (Quinn). My dad couldn't understand that Lou was Georgie's mom. He understood that Georgie was Lou's daughter, but he couldn't go the other way. In fact, he couldn't keep the three people straight at all, so I pulled out a piece of paper and I started a family tree. That seemed to help. 

What gets me laughing is when I ask my dad what he did yesterday..... his first response will be.... I went walking. What is hysterical about this is he rarely walks unless prodded to move his body. This is not necessarily dementia related, this is historically who he is! But I find it fascinating that in his mind, he is constantly walking and exercising. When I laugh, he thinks I am laughing at his memory loss. I correct him that I am in NO WAY laughing at that, but I just find it funny that he perceives himself doing all this walking. His therapists want him walking once an hour! Ridiculous for a person like him, but I just bought him a pedometer today and I think it will help him see his level of activity or LACK THERE OF, by seeing his daily step counts.