Saturday, January 7, 2023

Saturday, January 7, 2023

Tonight's picture was taken in January of 2009. Mattie was home from the hospital and had a visit from our resident Jack Russell Terrier, JJ. Mattie and JJ grew up together and were very close. But after Mattie was diagnosed with cancer and then had his limb salvaging surgeries, he became frightened of JJ. Mainly because Mattie thought JJ could jump on him and injure him in some way. I think this photo speaks for itself! You may also notice a Christmas village on the living room floor behind JJ. Mattie created that in December and he loved it so much, we kept it up for him to play with whenever he was home from the hospital. 

Quote of the day: Joy for human beings lies in proper human work. And proper human work consists in: acts of kindness to other human beings, disdain for the stirrings of the senses, identifying trustworthy impressions, and contemplating the natural order and all that happens in keeping with it. ~ Marcus Aurelius

Today was another exhausting day. Though I would have liked to sleep in, we go to the farmer's market every Saturday morning. So I got my act together and pulled myself out of bed. Before getting my dad up from bed, I got derailed on chores. Peter and I worked very hard today to put Christmas inside the house away. That was no easy feat as we decorated several rooms. Peter did the majority of the work, but once I got back from the farmer's market, I worked non-stop until I took my parents out to dinner. 

I love a live Christmas tree, but it is a big cleaned up job. We put four to five strings of lights on the tree this year. Getting them on was easy, getting them off was one tangled mess, not to mention the fact that there were pine needles everywhere. I have swept and vacuumed everywhere.

As of tonight, things are boxed, labeled, and back in storage for next year. It is a good feeling, but I miss seeing all the decorations and the lights. We still have to tackle outside decorations, which I am sure won't be easy. But hopefully not as laborious as inside. 

When I got home tonight with my parents, I was tired and frazzled. But I walked inside to a gift. My friend Denise sent me English tea and chocolate biscuits! Unexpected gifts, to me, are always very special. Not unlike Mattie, they perk me up during down times. I suspect Denise knows this, as she has been a part of my Mattie journey from the beginning. 

Behind Denise's gift you see evergreens. These clippings came from our Christmas tree. The tree is still beautiful and healthy, so I wanted to continue to capture that Christmas beauty on our kitchen island. 

Friday, January 6, 2023

Friday, January 6, 2023

Tonight's picture was taken in January of 2009. Mattie was out of the hospital and was invited to a friend's birthday party. These kind of events were a mixed bag for Mattie. Mainly because these outings reminded him how different he really was from the other children. Both in physical looks and ability. While at the party, I tried to capture Mattie in motion and playing with the other children. As you can see, this led Mattie to give me this look. This look meant he wasn't happy with me, I had to back off, and certainly not take any more photos. 

Quote of the day: You can accomplish by kindness what you cannot by force. ~ Publilius Syrus

I got up at 6am today, to get myself together, breakfast ready, and my dad washed an dressed, so that I could take my mom to the city for her hair and nail appointment. The appointment was at 10am, and I have to leave the house at 9am, in order to deal with traffic and parking. Parking in Georgetown is never an easy task and I try to park close by so that my mom doesn't have far to walk. My mom challenges me in many ways, especially since she doesn't have the insight into her own physical limitations. However, when she is at the salon, I notice that an employee is always next to her, which makes perfect sense to me, because she truly has awful balance. 

While at the salon, people were asking me how our Christmas and New Year's were! I answered the question in a trite manner, because I know NO ONE really wants to hear the truth. The truth is my daily existence is not for casual conversation. It isn't fun to hear about and I also know most people wouldn't and couldn't sign up for this. I get it and respect that choice. 

When I got home from the salon, it was about 1:30pm. About thirty minutes before Peter had to pick my dad up from the memory care center. I literally wanted to work with my mom on her physical therapy exercises, so that I could then take Sunny for a walk before having to pack my parents back up in the car and take them out for an early dinner. 

Needless to say, my mom said she needed a minute before doing the exercises. Her minute turned out to be 45 minutes later. At which point, I started working, rather than continue to stand around. As is typical, whenever I start working, that is when she appears and wants my attention. As a result, I never walked Sunny, I never got work done, and instead, finally did her physical therapy exercises with her. She is having a lot to trouble with sit to stand exercises, so she gets frustrated, angry, and then becomes teary. Caregiving is a very frustrating, stressful, and in my opinion is a selfless task that can weigh on you, as the amount that you give up piles up and up with each new day. 

Thursday, January 5, 2023

Thursday, January 5, 2023

Tonight's picture was taken in January of 2006. Mattie was home and trying to learn to play the piano. This keyboard was given to Mattie by Jerry, one of the amazing volunteers at the hospital. Jerry knew Mattie loved music and gifted him this keyboard. This keyboard came back and forth with us to the hospital. It brought Mattie joy. After Mattie died, I consulted with Jerry and we then donated the keyboard to the pediatric inpatient unit of the hospital. We wanted this keyboard to bring joy to other children, like it did for Mattie. When stuck in a hospital room, you would be surprised how music can turn around one's mood for the better. 

Quote of the day: To make a difference in someone’s life you don’t have to be brilliant, rich, beautiful, or perfect. You just have to care. ~ Mandy Hale

Another full day on the farm! When I woke my dad up this morning his right hand and wrist were completely swollen. He could hardily use his hand, which of course makes it very difficult to get up from bed or a chair, almost impossible to walk with a walker, make it safely down the stairs, and the list goes on. While showering and dressing him, I had Peter call the doctor's office as I wanted my dad seen and x-rayed. I felt it was vital to know what we were dealing with and determine if this was serious. 

My dad has been complaining of hand cramping for a while in this right hand and yesterday I began to see sudden swelling, discoloration, and pain. Naturally my head jumped to a vascular issue, since my dad got a pacemaker inserted in March of 2022. My mom was wiped out today from her physical therapy evaluation yesterday. So I left her at home with Peter and I took my dad to the doctor's appointment. 

The doctor (as some of you know, I call dopey) did a great job today. He could see my dad was in pain. He gave him a thorough exam of his hand and then told me he wanted to rule things out like a ganglion cyst (A noncancerous lump, often on the tendons or joints of wrists and hands) or worse an aneurism of the hand.

Right after this doctor's appointment, I called home and told Peter I was taking my dad to the hospital for a walk in x-ray. Once at the hospital, we waited about 30 minutes to be taken back for the x-ray, but the admin folks wouldn't give my dad an ultrasound today because the doctor did not write "STAT" on the script. I naturally pitched a fit and told them that the doctor wanted it done today, as this could be an emergent issue. I suggested she call the doctor's office and she did, right in front of me. The doctor and I were on the same wavelength and he faxed in an updated script with the STAT order. Just a head's up to anyone reading this. If you are given a script for a radiology test, make sure the doctor writes STAT on it so that it can get completed that day!

The x-ray went smoothly and the tech allowed me in the back so that I could see the images as they were taken. I am no doctor, but even I could tell there was no breakage. The tech truly wanted to help us out and have my dad do the ultrasound there and then, but there were no slots open for him. The tech really tried, as he could see the struggle and challenges I have moving my dad about. 

So at that point, I called Peter and told him to drive my mom to Clyde's. That we would all meet there and have a late lunch and then I would take my dad back to the hospital for his 6:15pm ultrasound. Thankfully Peter was available and able to juggle this today. Any case, I got my dad back to the hospital around 5:30pm and they took us immediately. Not only that, I was able to get results on both tests and my dad has NOTHING remarkably wrong. Therefore, I am assuming we are dealing with tendonitis. I did book an appointment with my hand doctor for my dad because he may need (like my mom had about a month ago) a shot of cortisone in his hand to improve the situation. For my dad, his hands and arms are crucial to his existence at home. In the mean time I have him in a hand brace, on Tylenol (as he can't take Advil), and icing the hand. 

Wednesday, January 4, 2023

Wednesday, January 4, 2023

Tonight's video was taken in January of 2009. We were in NYC with Mattie, so that he could start his experimental immunotherapy treatment. This large cancer institution had a warehouse style child life playroom. The room was enormous and extremely loud. The video will show you this nightmare. You can hardly hear Mattie speak. This was a night and day difference from our experiences at Georgetown. Mattie's child life specialist back at Georgetown, contacted the child life team at the NYC hospital. She told the team to save packing boxes for Mattie, because he loved to create with them! I can assure you the NYC team thought this was an ODD request and thought Mattie's creativity was equally strange. As you can imagine I did not see eye to eye with this team and for the most part they stayed far away from us while we were at the hospital. Being there was a complete 180 from our experiences at Georgetown. In any case, this short video clip shows Mattie explaining to us what he built... an airplane. I will never forget carrying this big plane through the hospital, into a taxi, and to the hotel room! 

Quote of the day: Kind words don’t cost much. Yet they accomplish much. ~ Henry James

After I got my dad ready today, Peter took him to the memory care center. I then got my mom in the car and we headed to the hospital so she could have an evaluation for physical therapy. My dad's therapist was so good with him, that I wanted my mom to work with this same therapist. I did a lot to make this happen, but I was successful. My mom is a completely different patient from my dad. She is far more emotionally taxing and has a lot of anxieties. So you have to be able to manage her behavior and attitudes in order to effectively help her. I do not think her previous therapist was up for the challenge. I found the therapist to be like a limp noodle! My dad's therapist and I share a very similar energy style and outlook. I believe positive energy can make one feel hopeful and motivate change! 

I have seen Cassidy work with my dad, and now I see her work with my mom. Which is fascinating. She is consistent but of course because they have a different personality style, she has adapted to meet my mom's style. My mom has issues with walking, balance, and posture. The exercise you see below (sit to stand) is one that my mom has trouble doing. She needs a lot of support to go from sitting to standing. Here is the conclusion I came up with today! Of course it wasn't earth shattering, but it confirmed my suspicions. Yes my mom does her PT exercises at home, but she isn't doing them correctly. Therefore, moving forward, I will need to supervise her in order to make sure she is actually developing the skills we hope to achieve in therapy. Of course that means ONE MORE thing onto Vicki's already very full plate. 

It was rather hysterical really, as my mom told Cassidy at the beginning of the session today that she does sit to stand exercises daily, with no problem. I knew this wasn't the case, and naturally when my mom tried to do it during the evaluation today, she couldn't! That frustrated my mom to no end, and we had to work on her "I CAN'T DO IT" attitude. Needless to say I have my work cut out for me, but once again, I have added more running around to my weeks, as my mom needs to go to the hospital twice a week for therapy for the next three months. 

Tuesday, January 3, 2022

Tuesday, January 3, 2022 -- Mattie died 692 weeks ago today.

Tonight's picture was taken in January of 2009. That week we took Mattie to New York City for him to start his experimental treatment. In between hospital runs we did all sorts of fun activities with Mattie. That evening, we took him to Times Square and the theatre, where he saw the Lion King. Pictured with us is my lifetime friend Karen, our NYC support team. You have to love Mattie..... despite all he was going through and being pushed around in his wheelchair, look at that smile!

Quote of the day: A kind gesture can reach a wound that only compassion can heal. ~ Steve Maraboli

This morning, my dad had his first session with his new personal trainer, Teddy. I decided we needed to pursue this route because we have maxed out on physical therapy sessions. Or I should say, my dad has plateaued and therefore doesn't qualify for more sessions at this time. So in order to maintain his strength, abilities, and endurance, his physical therapist and I discussed the next best option.... hire a personal trainer. But not just any trainer will do. The trainer has to be someone skilled with older adults and one with dementia. That requires a certain skill set. 

Before my dad was discharged from physical therapy in December, his therapist gave me the name of a private company that could potentially work with my dad at home! The company is Renew Me Fitness. I did follow through with the company and one of their therapists did an evaluation of my dad in December. Which led to our first session today. My dad will work with Teddy twice a week, for an hour at a time. I know this is the right decision because my dad doesn't respond to my direction regarding physical activity. He complains, acts out, and isn't compliant. However, he won't do this with an outsider. Since keeping him mobile is key to keeping him living in our home, I have been adamant about bringing Teddy in!

The company did a great job matching skill set and personality! Teddy LOVES his job, loves interacting with people, and spent a good portion of his life living in California. He just moved to the East coast in October. So he has a lot in common with my parents on that front. Teddy was easy to talk with and he got my dad doing exercises for 60 minutes. It was a full body work out and I watched the entire process. I am hoping this will be a positive addition to our week. 

Teddy said was he was impressed that my dad could do all the exercises he presented. Not just do them, but did three sets of 10, for each exercise. He said that most clients my dad's age can't do this, which led him to his next comment. He feels I am doing a great job at keeping my dad moving, active, and engaged. I typically don't get any positive feedback, so getting this unsolicited compliment was deeply appreciated. It takes GREAT effort to prod my dad to do anything, and I am relentless about doing cognitive exercises and a walking routine daily. Not to mention that I get him out almost everyday either to his memory care center or out to eat. Caregiving is so much more than hygiene, bill paying, and laundry. It also involves social stimulation, driving around to appointments, and encouragement to engage with the outside world! 

As tonight's quote points out, there is a lot to be said for compassion and kindness. They can turn one's day around on a dime. 

Monday, January 2, 2023

Monday, January 2, 2023

Tonight's picture was taken in December of 2008. Mattie was six years old and I will never forget this MOMENT in time. Mattie was absolutely miserable. He was coping with bone pain and dealing with all sorts of psychological consequences of his treatment. Mattie was highly anxious, very depressed, and behaved like someone who just came back from a war zone. In fact what you can't see was the incredibly difficult mood within our home prior to me taking this photo. Thankfully friends brought over these hats, headbands, and red noses. Peter suggested they put them on and worked very hard to change the mood, even temporarily. I will always be grateful to the countless gifts Team Mattie gave us, because we would always turn to one of these goodies as a positive diversion!

Quote of the day: Insensitivity makes arrogance ugly; empathy is what makes humility beautiful. ~ Renford Reese

New Year's is now come and gone and unfortunately it remains very present in my mind. We had company over this weekend and frankly the visit left me upset, bordering on angry. Right now hosting anyone, much less planning a big sit down meal is very difficult. It is difficult because I do not have a minute to myself. I know some people say this... that they are very busy, but in my case, it is very literal. I can't think of the last time I did something for myself. My day to day existence is managing needs, demands, and crises. Not to mention handling big hygiene tasks. 

What got me about our visitors was it was very clear that they did not want to be with us. I am not sure why they accepted our invitation if this is how they felt. You know when guests comes over, they step in your house, and you immediately say to yourself.... this is going to be a long night? Well this was what happened to us, it was as if we never socialized with these friends before. It was incredibly awkward and I truly have been racking my brain to understand what evoked this reaction! 

Somehow our desire to give our friends' child gifts for Christmas was a big no-no. I have never met a 6 year old who did not want to open a gift, until this weekend. It was absolutely one for the books and no matter what we did, we couldn't engage this young girl. Having a God child doesn't replace Mattie at all, but it was our hope that this would enable us to have the opportunity to share in the nurturing of the next generation. What saddens me is that this weekend confirmed that any hopes I had for this are now shattered. 

We were supposed to see these friends on Christmas, but on Christmas day they called us to tell us they were sick and couldn't come over. This of course was a big disappointment for me, especially since I was in the process of cooking a 20 pound turkey. If you go back to my Christmas day blog posting, you will see it was a very difficult day for me emotionally. Their decision not to come contributed to that. Fast forward to this weekend, and I learned in conversation that they actually went over to another friend's house for Christmas. So it wasn't that they were sick that held them back but it was because they had a better offer. This was the final cherry on the cake for me. 

So on top of the awkwardness and the fact that we aren't valued, I then have to add to this the fact that they have NO appreciation for what I am balancing. They could see while they were with us that I have to do everything for my parents, including taking my dad to the bathroom and staying in there with him throughout the entire process. Therefore, hosting a big meal is not easy. Was there any acknowledgment for my role? NO! In fact, they did not offer to help me clean up, or even carry one dirty dish to the kitchen. Frankly it is remarkable and it once again reminds me what tonight's quote points out.... insensitivity makes arrogance ugly; empathy is what makes humility beautiful.

Sunday, January 1, 2023

Sunday, January 1, 2023

Tonight's picture was taken in December of 2007. Mattie was five years old and this backdrop became a favorite for our family Christmas photo. This was the photo featured on our cards in 2007. Our tree would not be complete then or now without Mattie's Christmas train. 

Quote of the day: As water reflects the face, so one’s life reflects the heart. ~ Proverb

As we face a New Year, many people view this as a new beginning. Time to make certain resolutions or commitments to one's self. I have NEVER been a big New Year's resolution person. I feel this only sets one up for failure. Therefore, I have never made a resolution, and given my current state, I don't plan on developing a new mindset.

What I do know is that with a New Year comes more anxiety, stress, and perhaps sadness for me and Peter. It isn't something we necessarily talk about, but it is very present, as a New Year marks yet another year without Mattie. My friend in cancer wrote to me today, to wish us a good New Year, and practically in unison through text messaging, we said the same thing. Which points out to me that our thinking is not that far off for other parents whose children died from cancer. 

We move forward, but we never move on or forget. In fact, I think the notion of forgetting brings about more sadness than it does to reflect on Mattie's life and death. I think seeing our God daughter yesterday, who is six years old, also reminded us once again who is missing in our life. It is hard NOT to compare another child with Mattie. 

Mattie was unforgettable. Even sick, he was a force, had an incredible inner energy, and natural curiosity. I always expect other children I interact with to be like him. However, they are not. Each child is unique and I can appreciate that, but Mattie set the bar very high for me.

It is 60 degrees outside today and I was looking forward to taking Sunny for a walk. However, even Sunny isn't himself. We had to cut his walk short because it is clear that the chemo is affecting his energy level and I would say is even making him moody. It saddens me to see Sunny change before my eyes and yet I am juggling so much with my parents, that it would be nice for something in my life to be stable.