Saturday, March 2, 2024

Saturday, March 2, 2024

Tonight's picture was taken in March of 2009. Mattie was clearly very busy. On his hospital tray table he had Legos and one of his creations made out of yogurt containers and boxes. Mattie loved to use a hot glue gun and to build with boxes. This passion started in kindergarten and continued throughout his cancer journey. Thankfully Mattie was creative because he really needed these positive diversions when confined to a 2x4 hospital room. What always amazes me was I knew how ill Mattie was, dealing with intense pain, and yet look at that smile!

Quote of the day: The loss of a pet is like losing a member of your family. ~ Bob Barker

Based on this photo, I can tell that it was HOT outside! How do I know? Because after a walk in hot and humid weather, Sunny would come inside and sit on the floor air conditioner vent. He would stay there until he had cooled down significantly. Sunny, was so much like a person. He had his own strong personality, his likes, dislikes, and was full of love and feelings. His eyes were indeed a window into his beautiful soul. 

My dad is slowly improving on his high dosage of antibiotics. His symptoms have greatly improved, he doesn't seem as winded when walking, and I am hoping in time his energy level comes back. I am glad to see his appetite has returned. I am making sure he gets plenty of bread and jam. These are his favorites and they help with weight gain. 

After getting my dad settled this morning, I spent some time on the computer, digging through some Foundation email and then figuring out how to autopay several of our bills. Literally two days ago, I woke up in a sheer panic. Bordering on hysteria. In my dream I was worried about how bills were getting paid and I was so disturbed in my dream that I woke up wondering...... will we have electricity, gas, and water? Rationally I knew we would, but dreams and feelings aren't always rational. It speaks to my level of exhaustion, fear, stress, and sheer disillusionment. 

For most of my entire adult life, I have never had to worry about paying bills and managing household finances. This wasn't my focus or responsibility. We all take on different roles in life, and now given my intense caregiving role, taking on this financial role is a very heavy lift. I am not only managing the household but helping my mom with bills and other administrative issues. Truthfully this alone could be a full time job, but what I am finding is I have many full time jobs that I perform on any given day. I am a testament to the fact that the human body, mind, and spirit can take on a lot more than we can imagine. Yet I also know (from my research) that such stress will come at a great price to me in the future. Yet despite the stress, what wears me down is knowing as I age, I won't have a spouse or a child to turn to for support. It is a painful reality.

Friday, March 1, 2024

Friday, March 1, 2024

Tonight's picture was taken in March of 2009. The child life playroom at the hospital had a Wii game. The game  chosen was yoga positions. Literally Mattie was mimicking the character on the screen. That may not seem like a big deal, but remember Mattie was wheelchair bound. He couldn't put his full weight on his right foot and leg. So doing yoga movements was not an easy feat. Of course while Mattie was doing this, he had a whole bunch of people watching, who also jumped in and tried to compete with Mattie for the best pose. Needless to say, to this day, I find this photo, which was taken by one of Mattie's nurses, to be so meaningful and captured Mattie's energy and spirit. 

Quote of the day: If there is a heaven, it's certain our animals are to be there. Their lives become so interwoven with our own, it would take more than an archangel to detangle them. ~ Pam Brown

I remember this moment in time. I took Sunny for an afternoon walk around our neighborhood in the city. Want to know what he was staring at?! Try a squirrel. Sunny chased and scared it up a tree. Sunny wasn't going to take his eyes off of it! Sunny loved anything that moved. Of course, when we moved into our house, squirrels were no longer of interest to him, because he had access to much bigger game (deer, fox, etc.)!

 

Last night, while having dinner, my dad's face was flush. He was sneezing, coughing, and wasn't eating. Given that he has already lost 11 pounds in a few months, I am watching him extra carefully. Last Saturday, he was also sick, and I took him to urgent care (based on doctor's orders) to get a flu swab. I already knew he did not have COVID. My dad tested negative for both COVID and the Flu. So the doctor did not prescribe him anything. Now almost a week later, my dad had full blown symptoms and when I saw he had an 101 fever last night, I text messaged his doctor. Of course the doctor wanted another COVID swab done, which I quickly did. Thankfully I have a supply. My dad is once again COVID negative, but I wanted the doctor to make a decision and get a script into our pharmacy by 7:45pm. Why? Because our CVS closes at 8pm. Another reality I had to face early on when I moved out of the city. Things close much earlier out here in the suburbs. 

By 7:40pm, the doctor felt my dad needed antibiotics. I told him to call it in quickly. While getting my dad settled in his chair and cleaning up dinner dishes, I called CVS and asked them to check for this script because I was coming within minutes to pick up the antibiotics. Needless to say, I jumped into the car and was dead set on getting to the pharmacy before they closed. I got it done and came home and started him on his meds. I am thankful that I moved quickly on this because my dad had a fever of 101 while on Tylenol. 

There is something scary to me about things that happen at night. Things always arise in the dark and dealing with medical issues after hours is always stressful. Being the only abled body in my home now is also a major concern because I have no back up. No one close by who can jump in and help me. That alone can send me for a tail spin. But like everything else, I rose to the occasion last night and did what was in my dad's best interest. 

Thursday, February 29, 2024

Thursday, February 29, 2024

Tonight's picture was taken in February of 2009. Mattie was working on building a structure out of sticks but you maybe wondering what was Mattie eating!? Mattie was going through his cupcake phase at that point. In order to get Mattie to comply and work in his physical therapy sessions, his reward was a homemade cupcake. Literally in between hospital stays, I would go home, bake cupcakes and then take all of them to the hospital with us. Honestly I would have done whatever it took to support Mattie. 

Quote of the day: A dog doesn't care if you're rich or poor, educated or illiterate, clever or dull. Give him your heart and he will give you his. ~ John Grogan

This was a photo of Sunny standing right by my desk. What was he doing? He was herding me to get up and take him for a walk. This was typical Sunny! Truthfully he was great for my mind, body, and spirit. Though I may have been focused on something, and most likely didn't want to walk at that time..... I always complied. However, once I got outside and moving, it was truly a wonderful bonding moment for us. I am glad (prior to my parents moving in) I walked Sunny daily. We never missed a day!

It was a day of one chore after the other! After getting my dad up, washed, dressed and down stairs for breakfast, I encouraged him to walk ten minutes. In the not so distant past, my dad could walk 15 minutes consecutively without a problem. However, today he couldn't even handle ten minutes. He still seems depleted and wiped out from his weekend cold. Needless to say, I will have to keep an eye on him, as an upper respiratory virus is going around his memory care center. 

Once my dad was settled and in his recliner, I went grocery shopping. This is the only activity that I do independently. Though it is a chore, I really appreciate being able to move at my own pace, and not have people in tow for an hour. I then brought everything home, put the groceries away, folded and put the laundry away, and then decided to take on fallen branches and sticks in the front and backyard. I was out there for over an hour. I needed a big bin for the front and one for the back. We had quite a wind storm last night, and I would have to say this property has the dirtiest trees around. It is not just our house, but when they planned this community they picked the WRONG trees. I truly do not understand how my neighbors weren't outside picking up debris today! All I know is if I don't do it weekly, the property would be covered in sticks! 

Wednesday, February 28, 2024

Wednesday, February 28, 2024

Tonight's picture was taken in February of 2009. Believe it or not this was a photo of a physical therapy session with Mattie. I am telling you there was always an entourage and  a lot of activity in order to get Mattie engaged, participating, and moving his body. I will never forget these moments and the amazing efforts of Mattie's team. 

Quote of the day: I wanted to spend the rest of my life with you; but instead I am deeply honored knowing you spent the rest of your life with me. ~ Camille Marcotte

Seven weeks ago today, I put Sunny to sleep. It feels just like yesterday, yet I know without a doubt life in our home is not the same. I miss that beautiful and loving face. This photo says it all.... he was a happy pooch, he loved his family, and this was his pose when he was ready to play! 

I am not sure if you can see the treat on the floor in front of Sunny? It was a pig ear, which we used to purchase for Sunny at the farmer's market! It was a high value treat. As such, Sunny wouldn't eat it right away. He would instead carry it around the house. Room to room for days. Maybe after a week or longer, would he then begin crunching on the ear! This behavior always made me chuckle.

This morning, my mom had a physical therapy appointment at 9:15am. My mom gave the therapist a hard time on Monday, telling him that she did not like her 12:15pm therapy time slot. So the therapist tried to accommodate her today by coming early! What a nightmare. No matter how many times I told my mom about the timing of today (and it was even written on her calendar upstairs), she just doesn't get it correct. 

At 6:45am, I came downstairs in my pajamas to feed Indie and to get the newspaper on the driveway. The next thing I knew, my mom was coming down the stairs, fully dressed and ready to start her day! That may not sound unusual, but it was! Typically on any given day, it takes her 4-5 hours to get ready in the morning and then she doesn't get downstairs until 10am. So the fact that she was downstairs before 7am, meant she must have been up at the crack and dawn and couldn't remember (nor knew where to find the information) what time her therapy appointment was today! 

Instead of making my tea and going right back upstairs to get myself showered and dressed, I had to stop what I was doing and make her breakfast. In the midst of making her breakfast, I could hear my dad walking around upstairs. It is easy to hear because he uses a walker and it is a very distinguished sound. Any case, I got my mom situated and then decided to go into my parent's bedroom to check on my dad. Sure enough he was VERY confused. Confused because my mom was already up, dressed, and downstairs. He pays attention to her movements! Therefore, in his mind that meant that he had to get up and the morning process was going to start. I found him sitting on the chair in the bathroom with his depends off. He literally convinced himself that I was going to be there within minutes to shower him. Except that was FAR from reality! 

My mom truly doesn't get or take any responsibility for my dad. She could have explained the morning process and timing to him. But then again that would mean she was in touch with reality and knew about the timing herself. Which clearly she didn't! I am glad I checked on my dad because if I hadn't, he would have been sitting in that chair for 90 minutes until I showed up. 

I am noticing my dad is more disoriented than ever. Last night for example, I put him to bed at 9pm, because he was exhausted. At 10pm, I heard him walking around. I went into the bedroom to see what he was doing, and sure enough he was up, threw his pajamas off and onto the floor, and was getting ready to start his morning routine. Despite the fact that he has a HUGE clock in his bathroom and it was pitch dark outside, he can no longer use cues around him to orient himself to the time of day. 

Needless to say, I feel like I am constantly on high alert. If this was the only issue I had to contend with all day, that would be more than enough. But this doesn't even scratch the surface of my days. At some point today, someone from my dad's memory care center called me and then emailed. I never met her before. In any case, she wanted to touch base with me, and encouraged me to call her back. I did email her back and asked her point blank, why she was reaching out to me now. Especially since my dad has been at the center for two years already! I wanted to know what prompted this reach out. At this point in my life, if you aren't helping me, then I deem you as part of the problem! 

Tuesday, February 27, 2024

Tuesday, February 27, 2024 -- Mattie died 752 weeks ago today.

Tonight's picture was taken in February of 2009. Mattie's classmates sent him valentine's day cards, treats, and this HUGE lollipop! Mattie couldn't believe that this lollipop was as large as his head. The kindness, generosity, and support Mattie received from his community will never be forgotten. 

Quote of the day: Dogs…do not ruin their sleep worrying about how to keep the objects they have, and to obtain the objects they have not. There is nothing of value they have to bequeath except their love and their faith. ~ Eugene O’Neill

Sunny had some favorite spots where he loved to hang out and take a snooze. As you can see he loved lying on plants and grasses. Just the sweetest fellow ever. 

I miss everything about him. Tomorrow marks the 7th week Sunny has been gone from my life. 

After my usual morning of tasks, I sat down at the computer to continue work on Mattie Miracle's Walk website. While doing this, I was juggling emails and I saw one come in saying that the Foundation owed $1,000! It wasn't an invoice I was expecting. It was submitted by an on line bill payment method, and I was determined to see the invoice. Once I figured out how to sign in, I then looked at the invoice. It was from a company in Florida. I quickly sent the invoice to our legal team and then decided to reach directly out to the bill paying company. 

Needless to say, I wasted over 45 minutes on this problem. I finally resolved the issue, got the invoice removed, told the company this wasn't meant for me and that I wasn't paying it. While I was working that angle, the Foundation's lawyer sent me information about the company in question. Amazing what lawyers have access to! 

Turns out that one of the holdings of this company belongs to one of our corporate sponsors. I believe our sponsor was submitting an invoice for a Walk sponsorship to their parent company in Florida. Needless to say, I feel like I went full circle on this issue today and reached out to our sponsor to explain what transpired and how the invoice was misdirected to us.

Though my dad is no longer coughing, he doesn't have congestion or a runny nose, he remains extremely exhausted. In fact, other than going out to have frozen yogurt today, he spent the day sleeping. Of course this is a concern to me, because all the sleeping makes him lose further ground. His doctor has increased the dosage of his memory medication, with the hopes that we can keep my dad at his current mental state for another year. That said, the doctor also noticed a big decline in my dad's memory ability at his physical a few weeks ago. Since I think the testing done to assess memory is POOR at best and misses most things, it speaks to the profound decline of my dad, if this test was able to elicit a meaningful result. 

As for myself, I am not sure what to say other than I exist. I go through my daily chores, tasks, and responsibilities, but I feel like that is the extent of my life. My life has come to a crashing halt and I think my parents finally understood today that without my role as caregiver, I would see no point right now in living. This is not how I thought my life was going to be, and frankly no amount of talking or connecting with others will change my reality.    

Monday, February 26, 2024

Monday, February 26, 2024

Tonight's picture was taken in February of 2009. Mattie was home from the hospital and his friend Kazu and family dropped off this wonderful Lego kit earlier in the week for Mattie. We worked on it for days! Honestly Legos was therapy for all three of us, as it was a positive and constructive diversion from focusing on our reality. Of course once the creation was built, we could admire it, talk about it, and of course Mattie loved incorporating his play schemes into his Lego builds. I loved this Victorian village so much, and it symbolized the love of friendship, that I had it on display in our living room for years after Mattie died. 

Quote of the day: Heartbreak is life educating us. ~  George Bernard Shaw

One afternoon, I took Sunny out in our backyard. He found a painted turtle! As you can see Sunny was transfixed. Sunny loved anything that moved! 

While throwing garbage out today, I ran into my next door neighbor. They have a lovely Labrador named Sophie. Sophie and Sunny used to be great buddies. They would met at our fence line, sniff, bark at each other and when they would met up on the front lawn, they would play. My neighbor learned today that Sunny died on January 10. It is hard news to deliver, but I did want them to know, especially since they hadn't seen Sunny outside or me walking him. Sunny is a big loss to the block! 

I woke up this morning at 1am. Literally I practically jumped out of bed. I felt like someone was stabbing me in my eye. Given that I have narrow angle glaucoma, I am always in a panic that I may need to be rushed to the hospital for an emergency procedure. But honestly, some times it is hard to determine what is causing what! All I know is with migraines and cluster headaches, stabbing pain is common. A week ago, I had a cluster headache in my left eye. This week, it is in my right. It literally feels like something is in my eye constantly. Pressure, scratching, and very irritating. In addition to this, I am having eye twitching and fluttering in my ears. All common symptoms for me of migraines. Literally I am a mess. I had so much pain at 1am, that I did not know if I could go back to bed. Somehow I managed. 

Today was the day that Blanca was coming over to help me clean. She comes twice a month. We have known one another since 2008, when Mattie was diagnosed with cancer. In a way, we have practically grown up together, as she has witnessed many lows in my life. This being another one of them. In order to get everyone up and things moving in the morning, I have to get out of bed by 5:30am. NOT my hour. Once I hit the ground this morning, I haven't stopped moving yet.

I juggled my mom's physical therapy appointment today and my own virtual doctor appointment. I was supposed to have a virtual appointment with my kidney stone doctor at 11:15am. But at 10:30am, my phone rang and it was the doctor. Fortune for him, I could accommodate his surprising time change. 

Literally my day involves jumping from one task to another. Balancing demands, needs, and problems. Along my journey, I have come to meet a lovely woman in England. She is part of my support group. We have bonded over similar issues and we write to each other daily. Ironically I no longer attend the support group.... as I have issues with groups, but though I only attended one group session, this one participant and I immediately connected. Given all that I am balancing, it is interesting to meet someone else on a similar journey. A similar journey across the pond. Despite our time difference, we write back and forth to each other when we can and I look forward to hearing and sharing stories. 

Sunday, February 25, 2024

Sunday, February 25, 2024

Tonight's picture was taken in February of 2009. That day, Mattie's physical therapist came to the pediatric unit to have a session with Mattie. She brought a bunch of games with her because by that point she understood she needed all the available tricks up her sleeve to get Mattie engaged and eager to participate. Prior to Mattie's cancer diagnosis, he and I did about two years of occupational therapy together. As Mattie dealt with sensory integration issues as a toddler. So I was very used to being present, participating, and taking part in all exercises. In fact, Mattie typically wanted me to try things first before he would venture a try. As you can see, Mattie had me playing twister before he tried it himself! There was nothing I wouldn't have done to support him in his journey (both pre cancer and with cancer). Look at his smile while he was directing my movements!

Quote of the day: The bond with a dog is as lasting as the ties of this earth can ever be. ~ Konrad Lorenz

Each spring I captured a photo of Sunny by our complex's tulip garden (when we lived in the city)! To me it was the official sighting that spring had sprung. Sunny was always so compliant with my desire to snap a photo of him and I am glad I never missed an opportunity to share these moments with him. As I always told him... he was my baby!

I have always been a Diana Ross fan, and perhaps I am biased, but I LOVE the music from the 1980s. To me it was memorable, you could sing these songs, and for me music evokes feelings and emotions. For the most part, I may appear to be a person who is very together emotionally. It takes a lot for me to break down and cry, especially in front of other people. Well that is until music is integrated into my moment in time. Today, Diana Ross' song.... When you tell me that you love me, was swirling around in my mind. In fact, given how I am feeling, it is not unusual for songs to just pop into my head. Songs which ironically capture my feelings, emotions, and turmoil. Literally the words from this song, brought me to tears numerous times today. 

When I was in my twenties, I went to Las Vegas with my parents. Diana Ross was performing at our hotel. We were fortunate enough to get tickets. Back then I may not have understood the true beauty of Diana Ross, but despite my young age, it would be impossible NOT to recognize...... her talent, her love for music, that she is an stellar performer, that she LOVES her audience, and is a consummate show person (I have never seen someone sing non stop without breaks, to quickly move off stage and minutes later come back on with a new costume, hair do, and vocalization)! Diana Ross made a permanent impression upon me. 

So in all reality, it isn't that surprising that while I am so distraught, her words captured my mind, heart, and spirit today.  Her song begins with..... 

I wanna call the stars down from the sky

I wanna live a day that never dies

I wanna change the world only for you

All the impossible, I wanna do

I feel like I have faced the impossible way too many times in my life. Yet as long as there are stars in the sky and my Mattie Moon shining above, I try to hold out hope.