Tuesday, February 21, 2023

Tuesday, February 21, 2023 -- Mattie died 699 weeks ago today. 

Tonight's picture was taken in February of 2009. This maybe one of my favorite physical therapy photos! It captured the antics, energy, and community we created at the hospital. The goal was to get Mattie to walk and use his legs. It was a true challenge since he had prosthetic bones in both arms and in his right leg. Typically when you are relearning to walk, you can rely on your arms. This wasn't the case for Mattie. In fact Mattie was hesitant to use a forward facing walker, which was why Anna found this pediatric reverse walker which Mattie preferred. Yet to get Mattie to walk required our whole community to participate for support. In the conga line with Mattie was Jessie (his art therapist), Linda (his child life specialist), and Anna (his physical therapist) leading the charge. 

Quote of the day: Patience is the calm acceptance that things can happen in a different order than the one you have in your mind. ~ David G. Allen

This morning I had to take my dad to his podiatry appointment. I take him every three months. The doctor's office is literally ten minutes from our house. One perk! But the building the office is in is a nightmare. The complex is working on their parking garages. So literally you can't park, and have to use their valet service. Today's surprise was the elevator was out of service. The podiatrist is located on the third floor. We were given the option of working with the doctor in a different office on the ground level or get this..... have someone put my dad in a chair and two people would carry him up three flights of stairs! Insane no? I just don't get the management of that building. The second option sounds like a law suit waiting to happen.  

Naturally we met with the doctor on the ground floor. When escorted into the ground floor office, we were accosted by a terrible smell. It smelled like a thousand pounds of raw garlic in the office. The smell was so terrible that I had my mom stay outside in the lobby. My mom has a lung condition and I was sure this smell would set her off. I then asked the doctor's assistant what was with that smell. She told me that the former occupant of the office moved out and since then they have been using every type of spray to deodorize the office. I told her the sprays weren't working. 

I then asked her if the former occupant was a urology practice? So she looked it up in the directory. It was not, but the adjacent office is indeed a urology practice. I told her that I knew what smell was from first hand experience. If you have a bladder condition like me, you may be familiar with DMSO treatment. DMSO (dimethyl sulfoxide) is a liquid solution that treats pain and discomfort in your bladder caused by interstitial cystitis, also known as bladder pain syndrome. A doctor will give you this solution as an injection into your bladder in a hospital or clinic setting. 

Years ago after Mattie was born, I developed cystitis. I am not sure what was worse, the pain from cystitis or this treatment. The treatment was torturous and it felt like I was holding acid within my body for 20 minutes! I think I underwent this procedure three times and after that, I dismissed myself from that doctor's torture and practice. On an aside not only did DMSO not work, it made me incontinent for about 6 months. Keep in mind that I was in my early thirties then and a new mom.  

But back to my point, DMSO smells like garlic. Also after a DMSO infusion you smell like garlic and your mouth tastes like garlic for days! I remember going for these torturous treatments and feeling sick to my stomach from the smell. It is a time in my life I will never forget, and walking into this podiatry office today, brought up memories I had really wanted to forget. 

The podiatrist has gotten to know me by now. After the exam, I helped put my dad's compression socks back on his feet and his shoes on. The doctor was so impressed with my ability to work with my dad that he gave me a fist pump! 

After surviving the podiatrist visit, my mom insisted on going to the bank. With my mom I have to pick my battles. If I don't, we would be fighting daily. Maybe hourly. My mom is no longer rational at times and has no insight into her cognitive abilities. Today's issue was she said that I was not on her bank account. She insisted she had to go to the bank to add me to her account. I told her we addressed this problem right before they moved from Los Angeles. I remember the nightmare of paperwork and visiting each of their banks. The point is she didn't (and this happened in December of 2021)! Instead of arguing with her, we waited to talk with a banker today. The banker told her exactly what I had been saying all along. Of course my mom will not tell me that I was right, or that she made a mistake. Honestly there are times I feel like I am the one going crazy. But I try to remain patient and handle each crisis as it arises, and I assure you there is NEVER a day without one or many crises. 

Now that is just my mom. But understand while managing my mom, I also juggle my dad. While trying to get them in the car this morning to get to the podiatrist appointment, my dad told me he had to urgently go to the bathroom. Mind you I took him to the bathroom five minutes before leaving the house. So I got my mom in the car and then turned my dad around and took him back to the bathroom. By that point I was too late. He had pooped on himself and while taking off his depends, the poop went everywhere. In the midst of this juggling act, he urinated all over the floor. I had to clean him, clean the bathroom, and the floor, and then turn around and get him back in the car and to the doctor's office. How we made it on time, I don't know!!! Honestly if someone did a reality TV show about my daily life, it would be hard to watch. 

Monday, February 20, 2023

Monday, February 20, 2023

Tonight's picture was taken in February of 2009. This was a typical physical therapy session for Mattie. In order for us to get him to buy into the process and participate, we allowed him the opportunity to test things out on us. If we were willing to do the exercises, then typically Mattie would then try it! Smart fellow! Any case that day, Anna (Mattie's physical therapist) wanted Mattie to play a game like twister. So literally Anna and I took our shoes off in the middle of the hallway, and we followed commands Mattie was shouting out at us!

Quote of the day: A mother cannot give birth to a child and not lose a piece of herself. The child takes a part of the parent with them, holding it as their own. Whether it be their heart or soul, they are now connected for always. ~ Sejal Badani

On top of my usual routine, I am busy working on the Foundation's walk and raffle website. It would be lovely if this site would just magically create itself. But one thing I am grateful for is that I am only updating or revising a template I created a few years ago. In 2020, the company we use to manage our Walk, updated their technology. This meant that I had to create a website from the ground up. That was a steep learning curve for me, but I was determined to do it! Thankfully this technology change did not happen when my parents were living with me, because my stress would be through the roof. As it is hard to even return emails with them in tow. 

My parents think only of their immediate needs and concerns. Case in point, I was in the kitchen having a conversation with Peter about a job lead. As many of you know, Peter is actively looking for a job. Peter has been working hard and doing a lot of research as it pertains to a particular opportunity. He was updating me on this work! At the same time, we heard my mom clopping down the staircase (and I mean clopping, you can't miss her). She came into the kitchen, handed me her cell phone and wanted me to address several things on her phone right there and then. 

If she was rational, I would naturally have told her to wait until I was finished talking and then would help her. However, now that my parents have been living with me for 14 months, I know I can't hold my mom to the same expectations I would have in the past. Instead, Peter and I both know that we have to stop talking and manage her issues. If not, things spiral out of control quickly and I was in no mood for an argument and histrionics this evening. 

Nonetheless, day in and day out of this behavior is challenging and emotionally exhausting. I am not sure the average marriage could handle the stress we are living under. Fortunately though, Peter and I know all about caregiver stress and not being able to live a normal and free life.

The highlight of today was the weather. It is beginning to feel like spring. Even our yellow crocuses are popping up!

Check out who loves the bird traffic! Miss Indie is a riot and if we listen carefully, she chatters at the birds in the window. 

Sunday, February 19, 2023

Sunday, February 19, 2023

Tonight's picture was taken in February of 2009. Mattie was in the hospital hallway with Anna, his physical therapist. What you are seeing was a typical therapy session. Anna learned early on that Mattie's sessions would require creativity, a level of competition, and a lot of cheering to be successful. In fact, Mattie never did a particular activity without one of us demonstrating it first! Smart fellow. As you can see, Anna was showing Mattie what she wanted him to do with his feet! To basically stomp down on this air pedal, which would send a toy rocket into the air. 

Also notice Mattie's IV pole. There was NOT one day without Mattie's pole being decorated. Our friend Junko and her mom made Mattie two different sets of origami cranes. Each crane was made with great thought and prayers for Mattie's healing. We loved these cranes so much that we literally brought them back and forth from the hospital with us. They always hung on Mattie's IV pole, up to the day he died. Now one of the sets with 1,000 handmade cranes is on display in my home office. These cranes mean a lot to us.... for the time and effort it took to create them, to the fact that they symbolize incredible community support and love. 

Quote of the day: Our connection with our intuitive self is ever present and always a part of ourselves. ~ James Van Praagh

Yesterday we took my parents out for an early dinner. In fact dinner now is at 2 or 3pm, because the later we get into the day, the more out of it and exhausted my dad is!

While at the restaurant yesterday, Dawn (one of the servers we love), brought my dad a cupcake! The reason for the cupcake was she was trying to reward him for good behavior at Friday's meal. 

My dad can be like a broken record. He will ask Dawn the same questions over and over (such as.... is the food fresh, can I see the resume on my server, does the restaurant still allow tipping). He is so repetitive with her, that I began to do games at the table. 

Games that involved a report card, or in December I launched... 'December dollar days.' Every silly or repetitive thing my dad said to Dawn, she would get a dollar. Dawn did well in December... try a sum total of $100! 

It was a game but it was also was one of our holiday gifts to Dawn. Friday before Valentine's Day, I launched '$5 pre-valentine day.' Again with every silly or repetitive thing my dad said to Dawn, she earned $5. That day, she received a $75 valentine's day gift!

My dad and Dawn!

Today was not one of my finest moments. I dragged myself out of bed and did my usual routine. When I got upstairs to wake up my dad, I started by trying to get into their clothes closet to pick out items for my dad to wear after his shower. However, each morning trying to get into the closet is a nightmare. Why? Because my mom insists on working out of the closet. In fact, she stands right behind the closed closet door (there is a mirror behind the door). There she puts on her makeup and gets dressed. I frankly don't get this since she has her own bathroom and dressing room to use. I don't get why she doesn't use it, but prefers to stand in a closed closet where the lighting isn't great. 

In any case, this morning I was in no mood to dance around her in the closet, so I started screaming. Again, not nice, and not patient. Just exhausted and at my wit's end. I think I aggravated her so much from my screaming that for the rest of the morning she was nauseous. Of course that wasn't my goal and I have to learn to be calm. MORE CALM. For the most part I am, but at times, I am only human and can handle just so much. My mom likes to pepper me with the fact that she would like to move out, because she doesn't like how I curtail her freedom (to drive specifically), or better yet I love it when she tells me that her life is so different now and she isn't happy. There is NO acknowledgment at all on how this daily caregiving schedule impacts me. 

In between the usual juggling act, I went back to creating the Foundation Walk's webpage. I am trying to tackle a little of it each day, as I want this site launched in March. 

Saturday, February 18, 2023

Saturday, February 18, 2023

Tonight's picture was taken in February of 2009. Mattie was in his hospital bed and eating a homemade baked cupcake! Why did I bring cupcakes to the hospital? Because I used them as incentives! If Mattie cooperated and participated in physical therapy sessions, he was awarded with a cupcake. Since this was something Mattie still enjoyed eating, I went with it! Chemotherapy and surgery transformed Mattie's appetite, or lack there of! By the time he died, he was emaciated. Therefore, whatever he wanted to eat, that was what we gave him. 

Quote of the day: In order to master a field, you must love the subject and feel a profound connection to it. Your interest must transcend the field itself and border on the religious. ~ Robert Greene

This morning I woke up and I thought for one minute that after breakfast, when all my morning chores were done, that I would take a nap! I never nap, unless absolutely necessary! But it came to my mind and it was truly something I had wanted to do! I am that tired! But like today's quote points out, some of the things we do and love become like part of our daily religion! 

What I am talking about, as being my daily religion, is the Foundation! So instead of taking a nap, I moved to my computer. It is that time of year when I have to turn my attention to Foundation fundraising. Which means planning our virtual Walk. I decided to devote several hours today to designing the Walk website. Of course, like any computer work, it always takes MUCH MUCH longer than you think. 

After several hours of working, I can safely say that I am not any closer to launching the Walk website. To me this is very frustrating! Of course I also work in a fish bowl. My office is right next to the family room. So I hear the TV, all conversations, and when my dad gets up and needs help in the bathroom, I have to stop what I am doing to assist him. Therefore I have to say that I HATE my office. There is no time in the day, other than when I shower and dress, that I have a minute to myself. I have no space, no down time, and never a moment when someone doesn't need something from me. 

Sometimes people ask me.... how do you get any Foundation work done given all that you are balancing? The answer is plain and simple...... Mattie. My commitment to him and our forever bond are what makes me compelled to push myself, to work at all hours to keep his legacy running. 

Friday, February 17, 2023

Friday, February 17, 2023

Tonight's picture was taken in February of 2009. Mattie was in the outpatient clinic that day and his art therapists invited him to add his handprint to a NEW pediatric sign they created for the in-patient units. The art therapists painted the sign below, but thought it would be special to feature a few handprints. Mattie said NO to the handprint. So without skipping a beat, his therapists suggested Mattie's footprint instead. Jessie and Jenny painted Mattie's foot red and then just like the Hollywood Walk of fame, Mattie's print was captured forever.

This red print on the right was Mattie's. Whenever I enter the pediatric in-patient units at MedStar Georgetown University Hospital, I see this sign. It transports me back to the day above when Mattie created this footprint. It never dawned on me back then that in the future I would only have the print and not the boy!

Quote of the day: Heroes didn't leap tall buildings or stop bullets with an outstretched hand; they didn't wear boots and capes. They bled, and they bruised, and their superpowers were as simple as listening, or loving. Heroes were ordinary people who knew that even if their own lives were impossibly knotted, they could untangle someone else's. And maybe that one act could lead someone to rescue you right back. ~ Jodi Picoult

I absolutely relate to Jodi Picoult's quote, though I must admit that I have read practically every book she has written. She writes fiction, but it is clear to her reader the extensive research she does on the given subject matter addressed in each of her novels. We have been conditioned in our society and through media and Hollywood, in particular, to think that a hero has to do something extraordinary. Something so noteworthy that it gets covered in the evening news or a movie is made about the person. 

However, we are surrounded by heroes in our lives everyday. To me it is the small acts of kindness, these unexpected gifts of humanity, that to me are truly heroic. Think about it, when you had a bad day, if someone does something nice, kind, or caring, doesn't it feel like you just won the lottery? 

Last night, Peter and I were invited to a friend's house. Our friend lost his wife to cancer in 2021. Typically I do NOTHING social because I truly can't balance it. I used to love going out for lunch or dinner with friends. But now that is impossible, as I have to worry about my parent's meals and therefore if I eat with them, I can't possibly eat again. So yesterday I took my parent's out for a late lunch and then we went to my friend's house at 6pm. I knew I had to leave by 9pm, in order to get back home to put my dad to bed. So I always feel pressure at all times. 

Our friend wanted to share two memory books he made after the death of his wife. They were very meaningful, personal, and inspirational. My goal is not to talk about the content here, but to express what it evoked in me. 

I saw photos of this couple over decades and heard about the wonderful things they did together and how they lived their life raising their family. I got to see photos of their children through the years. While observing and absorbing this content, I couldn't help but reflect how different my life is from what I was viewing. If Peter and I were asked to create such a memory book, ours would look so VERY different. 

It would look different because childhood cancer cut our lives short. While other parents will have photos of their children developing over time, our pages would be blank. I wouldn't have comparison photos to what I saw last night, nor will I ever have grandchildren photos. Somehow this hit me and has remained with me today. 

Of course while reviewing these books with our friend, I was very present, focused, reflective on his words and the work he put into creating the book, and I was committed to listening, sharing, and letting him know he was not alone.  I felt honored that he wanted to share such intimate material with us. So like Picoult's quote says, "even if [my] own life was impossibly knotted, perhaps [I] could untangle someone else's."  

Thursday, February 16, 2023

Thursday, February 16, 2023

Tonight's picture was taken in February of 2009. This was Mattie's last Valentine's Day with us. That day he received two big boxes filled with Valentine's cards from his classmates. In fact, not just Mattie's class, but all four kindergarten classrooms. In addition, Mattie got this huge lollipop as a gift! Mattie thought it was a riot, as it was as large as his head. 

Quote of the day: Never underestimate the empowering effect of human connection. All you need is that one person, who understands you completely, believes in you and makes you feel loved for what you are, to enable you – to unfold the miraculous YOU. ~ Drishti Bablani

Every quarter my dad's memory care center sends home a report on how he is doing! Frankly if you read this quarter's report, you would think my dad is an easy as pie to take care of. They keep saying that my dad is oriented to person and place, just not to time. Here is my take on all of this! My dad is very quiet, isn't physically aggressive or active, and therefore in a group setting he requires very little attention. So from their perspective, in comparison to the other participants in the program, my dad is easy. But I also think he just falls off their radar scope. 

They think he loves their program, enjoys particular activities, such as the monthly visitor who comes in and dances with participants, but the reality is actually quite different. My dad doesn't enjoy watching or seeing the dancing, he doesn't enjoy the arts and crafts and most days comes home and says that he was very bored at the center. 

Yesterday was hysterical! Peter picked my dad up from the center, and the center staff told Peter how much my dad loved the chair exercises. Even Peter was like..... 'what????!' We all know my dad prefers NO movement and one could classify him as physically lazy. Peter pushed back on the staff person and when she told Peter that my dad said the exercising was "fantastic," Peter translated that to the staff person was fantastic actually means! Fantastic is VERY, VERY sarcastic, and means whatever activity he is doing, he dislikes. We know this because we KNOW the person. 

So what may look easy to them, translates down to the simple fact that they aren't investing in my dad, like I do. If they did, then they would understand more of the reality! This situation is not unlike a teacher, dealing with many children in a classroom. The kids who stand out the most are typically the ones who call attention to themselves. 

I have told the center that I have seen a significant decline in my dad since he moved to Virginia. They disagreed with me! Which only irritated me further! Today for example, I took my parents out to lunch. On Thursdays, we go to the same place and dine with the same server every week. When we got home and I helped my dad to his chair, his first question to me was..... when are we going out to eat?! I literally lost it, as it is an hour round trip drive for me to the restaurant, and then we sit and eat for about 2.5 to 3 hours. This is a significant amount of time I devote to eating. Mostly because this is the one activity my parents like to do and it gets them out of the house. I am frustrated that my dad couldn't remember anything that we had immediately just done! He has no understanding of whether he has eatten, whether he is hungry, or if he has to go to the bathroom. 

On any given day, I feel like I am caring for a big 87 year old child. The only issue of course is there is no growth and development from week to week, just decline. It is a very sad commentary what has happened to my dad and mom, because in all reality they are no longer the parents I once knew. 

Wednesday, February 15, 2023

Wednesday, February 15, 2023

Tonight's picture was taken in February of 2009. Mattie worked that day on a bunch of Valentine's Day surprises for me in the child life playroom of the hospital. When I was allowed back into the room, Mattie gave me his hand crafted gifts. Gifts such as a crown of hearts and a decorated box that was filled with drawings and valentine's! It was a special moment and I am so glad that Mattie's art therapist captured it.  

Quote of the day: Since you cannot do good to all, you are to pay special attention to those who, by the accidents of time, or place, or circumstances, are brought into closer connection with you. ~ Augustine of Hippo

My day started with my dad pooping in the shower again. He is now doing this once or twice a week. I can't even tell you how unpleasant and noxious this is to clean up. But I know when this happens, it is the start of a long and bad day. When my dad first did this months ago, I would get upset. Now I realize this is part of the dementia process and there is no rationalizing with him. 'It is what it is!' Which has become my go to statement. 

This week I learned that my dad's fitness trainer will not be returning to work with us. He has a family member who was just diagnosed with cancer and has to relocate out of the area to be of support. I can't tell you how saddened I am to receive this news. Naturally hearing that anyone has cancer is upsetting and I wish it were different for my dad's trainer. But from my standpoint, I am frustrated because this trainer was a great match for my dad. My dad is LOW energy and will look for any avenue out of physically working hard. This trainer knew how to energize my dad and get him to comply with exercising. So I feel like I am back to square one and I know I need to find a solution because keeping my dad physically mobile is the key to him living at home. I also know my limitations. I am stretched thin and I am not going to get into a screaming match about my dad's exercise routine. Someone else has to take this on!

While at physical therapy today with my mom, I mentioned to my mom and dad's therapist about what happened to the fitness trainer. Turns out one of my dad's therapists who works at the hospital also sees patients privately. I am now working with her to see if she will come to us and get my dad on a routine. Thankfully as one door closes another opens, because I need the help. 

I love tonight's quote because it points out the importance of doing good work with others, and starting with those we come into contact with is a good place to start. We don't have to transform the world for hundreds of thousands. Just a few will do, and in the process, I believe this goodness/kindness gets transferred from those we touch to countless others. What am I talking about? 

Well in 2021, Mattie Miracle was involved in a Thrivent Virtual Take the Plunge Challenge. Thanks to that challenge, we raised $10,000. This money was used to start a new initiative, a therapy support grant program. This program is designed to award families coping with childhood cancer an $1,000 grant to access mental health services in the community. That may sound strange, because you maybe asking yourself.... doesn't the hospital provide such services to its patients?! The answer is NO and in many cases families are burdened with so many medical expenses that paying out of pocket for mental health care is prohibitive. Which is why we decided to pilot our grant program in 2022. We are working with two families. 

Today I heard from one of the families and the mom's message was beyond beautiful. Her son suffered a stroke, while undergoing cancer treatment. Imagine dealing with cancer and the side effects of a stroke?! It was recommended that this child start music therapy to help with his recovery. Great, but the family couldn't afford this and frankly no other non-profit was willing to provide funding. I learned about this family's need from a social worker listserv. Needless to say we have been paying for this young fellow's music therapy sessions since November. His mom shared with me that her son is beginning to use his arms again and is also making cognitive reconnections. She feels this is solely due to music therapy and our support brings her to tears. I will be writing about this in an upcoming Foundation newsletter, but her message reminded me that what we are doing is vital and makes a huge difference in the lives of children and their families. 

Tuesday, February 14, 2023

Tuesday, February 14, 2023 -- Mattie died 698 weeks ago today.

Tonight's picture was taken in February of 2009. This was our last Valentine's Day together. That day Mattie worked for several hours in the child life playroom of the hospital, creating cards, a gift box and this crown of hearts for me. I wasn't allowed into the playroom, as this was supposed to be a surprise. When I was called back in, Mattie gave me so many wonderful hand made gifts. I was deeply touched and his art therapist, Jenny, snapped this photo of us together. It is one of my favorite photos! It captured a typical Mattie move.... in which he would touch my nose and stare into my eyes! 

Before we moved in 2021, I disassembled all of Mattie's Valentine's gifts to me from 2009. I took bits and pieces of them and turned them into this collage. This collage is now in my office and I see it daily! 

Quote of the day: When we love, we always strive to become better than we are. When we strive to become better than we are, everything around us becomes better too. ~ Paulo Coelho

While getting myself together this morning, I was listening to the radio and they were talking about Valentine's Day. Specifically asking whether listeners thought it was a good idea to mandate that every child in school bring in a valentine's day card for each classmate. I heard both sides on this issue. Those who were for it, basically felt that they did not want any child to be left out of the holiday or excluded from not getting a card in school. Of course the other side of this debate was that forcing kids to give cards to other kids they truly don't get along with sets up a bad emotional dynamic. 

Honestly I can appreciate both sides but as I was listening to this my thought was... wow life has gotten too complicated! So complicated that we now have to think for our children, regulate their card giving, and tell them who to like and who not to like. Unfortunately we as humans gravitate to some people, but not to others! Should we be forced to treat everyone equally? I think the answer is NO! I think there is one thing to be fair, human, and kind to everyone, and quite another position that one has to go through the motions of liking everyone. Chances are that isn't natural and in fact makes us disingenuous. 

I know when Mattie went to school, we lived with this policy of everyone gets a card! Fortunately for us this was during the preschool and kindergarten years, and frankly when they are so young, I saw no problem with every little person getting a card. But as deeper emotions form with age, it doesn't make sense to give a card to everyone. I wouldn't be expected to do that in my life now, so why are we asking children to do this? Any case, if you are interested in this debate, read, "Should Kids Be Forced to Give Valentines to Everyone?"

I took my parents to a doctor's appointment today. When my dad was hospitalized in March of 2022, we met a rehab medicine doctor. He has a great team, who helped my dad considerably! So my dad has remained a patient of his. Today, my mom also became his patient. The doctor gave my mom a thorough evaluation and wants to see her every four months. He is encouraging me to change her shower routine, so that she showers with a chair and shower wand instead of standing in the shower. He says the number one way people in their 80's die is falling in the shower, breaking a hip, and failing through recovery. 

After the doctor visit, I took my parents out to lunch. We went to Mattie's favorite restaurant and sat in the bar area. My parent like this part of the restaurant, as it is more lively. On Tuesdays, we know the server who works in the bar and she treats us beautifully. She gave my mom and I roses and chocolates! She literally brought in her own rose supply and gave them to certain customers. So we felt special!

To me there are signs of spring all around us! A camellia is blooming in our garden. 

Daffodils are sprouting out!

While walking Sunny today, we saw a carpet of crocus. I am saddened that Sunny no longer walks like he used to. He used to be my strong, energetic boy, who loved to walk for miles. Now his brain wants to do it, but the body won't let him. 

Monday, February 13, 2023

Monday, February 13, 2023

Tonight's picture was taken in February of 2008. Mattie was five years old and that day he had a playdate with Charlotte, his kindergarten buddy, who he referred to as his "girlfriend." Mattie and Charlotte brought out the best in each other and that day Mattie encouraged Charlotte to jump on his bed like a trampoline. Of course Mattie not only had his mattress on the bed, but on top of the mattress was a aerobed mattress. Needless to say the kids were bouncing up and down and having a good old time. Mattie's smile says it all. 

Quote of the day: We are like islands in the sea, separate on the surface but connected in the deep. ~ William James

It was another typical day on the farm. I have learned to celebrate the small miracles, like Mattie Miracle's February newsletter (read our newsletter) went out today and I am making great progress on getting all of our donation acknowledgment letters out. In December over 75 individual donations came into the Foundation and I make a point of trying to correspond with every donor. I have about 7 more letters to write and then I can close our annual drive paperwork and then turn my attention to our annual awareness walk.  

I honestly can't believe that it is awareness walk season. It seems to come around so quickly every year, and with it comes great stress about having to raise a certain amount of funds in order to run our programs. This will be my 14th walk that I have planned, and you would think by now I would be used to this stress and pressure. Unfortunately I can't say that I am, but the Walk event on top of what I am balancing each day with caregiving makes it a really bad combination. I can't imagine how wonderful it would be not to worry about where the money is coming from each year. After all, I am not a professional fundraiser, I don't have access to consistently large donors, and whatever money we raise, we are working hard for it. Nonetheless, when motivated there is no telling what one can learn to do. The Foundation is the testament of just that!!!

Sunday, February 12, 2023

Sunday, February 12, 2023

Tonight's picture was taken in March of 2003. Mattie was 11 months old and that day we took him to the US Botanical Gardens, a place that we all loved to visit. Of course Mattie was taking one of his favorite modes of transportation... riding on Peter's back! My mom snapped this photo and to me so much was going on here. We had a kid we didn't know observing us, we had me and Mattie having a dialogue, and Peter smiling and looking content. 

Quote of the day: A thousand fibers connect us with our fellow men. Our actions run as causes, and they come back to us as effects. ~ Herman Melville

I scrambled today to get work done, because at 12:30pm, my parents were scheduled to have a phone conversation with friends. In order to make this happen, I have to be available and very present. Therefore, I stayed up last night to finish the Foundation's February newsletter and proofed it this morning as well as worked on some more acknowledgment letters from our December annual drive. What used to only take me one week to complete, now takes me MONTHS! It is VERY frustrating for my personality type, but I have learned that I have to be patient with myself, because there is only so much one person can humanly balance. 

At 12:30pm today, I expected the phone to ring. It didn't! I waited for about 45 minutes and then at that point I sent an email to my parent's friends and said we would have to reschedule the call. When the friends wrote back they explained that they received a call from someone else and therefore were unable to make a call to us. I get this wholeheartedly, things pop up! But given all that I am managing, I frankly was upset. It shows a clear lack of appreciation for what I am doing and balancing. I did not dwell too long on this, but I have made a mental note about these friends.

We took my parents out for brunch at our usual Sunday restaurant. Since we visit the same three restaurants every week, I have gotten to know servers and managers. It is my opportunity to chat with others, share stories, and not worry about cooking, serving, and cleaning. I truly no longer like cooking at home, as my dad rarely eats well at home and eats so fast, I can't keep up with him. Whether I am home or at a restaurant, my dad has me jumping and meeting his needs. At least at the restaurants I have so many other people helping me. I am very grateful to all our amazing servers. They have become an integral part of my life, and given that Valentine's Day is approaching, I made sure they each knew they are loved.