Saturday, May 20, 2023

Saturday, May 20, 2023

Tonight's picture was taken in May of 2008 at the Mattie March. This event was hosted by Team Mattie and hundreds of family and friends came to show support to Mattie and us. It was an extraordinary day, that served as the model for our Mattie Miracle Foundation Walks from 2009-2019. Ten years of live walk events! On this particular day, all of Mattie's nurses, doctors, art therapists, child life specialist, and physical therapist attended the Mattie March. My joke back then was.... was there anyone left at the hospital? I said that because his team, which was like a second family to us, came out in FULL support. A day never to be forgotten. In fact, I can't walk on Mattie's school track, even today, without being transported back to this exact moment in time. To me Mattie's spirit lives on at that track. 

Quote of the day: Only through our connectedness to others can we really know and enhance the self. And only through working on the self can we begin to enhance our connectedness to others. ~ Harriet Goldhor Lerner

My friend Carolyn and her daughter Ellie came over to visit with me today. Carolyn has been the Mattie Miracle raffle chair since 2009. She has helped me in extraordinary ways over all these years. 

But first and foremost, Carolyn and I were moms together. We met at Mattie's preschool and Mattie and Ellie were in the same classroom. I liked all of Mattie's classmates, but I had a special place in my heart for Ellie. She is an "old soul." She was a creative child, sensitive, and I could tell even back then, she was deeply feeling and absorbed everything around her. Which is why I always say..... she'd be a great therapist. 

Whenever anyone comes to visit, I can get stressed out. But today I wasn't stressed out. Yes I had to jump up and down a few times, but since Carolyn and Ellie rolled with it, I did not feel awkward about it. Instead, there was an actual period of time when I stopped moving and had an ADULT and rational conversation. Their visit today was a gift and of course Carolyn keeps the tradition going of bringing me flowers and treats the day before the Walk. Carolyn has done this for years, and her kindness doesn't go unnoticed. 

Beautiful no?!

Tomorrow is the 14th annual Mattie Miracle Walk! It isn't too late to sign up to participate. Go to: https://2023.mmcfwalk.com

WALK (from midnight to noon in your time zone) and track your steps.

SNAP (10am to noon in your time zone) photos of you walking and send them to us by email (vicki@mattiemiracle.com) or post them to our social media platforms (use the hashtag…. #MMCFWALK).

POST photos with your final step count (shown on your tracking device) on our social media platforms (#MMCFWALK). Prizes are given for registered walkers with the most steps (VISA Gift Cards).

Mattie Miracle's co-founders will kick off the virtual event on Facebook Live at 9:45am (EDT) on May 21st. Raffle winners will be announced on Facebook Live on May 21st at 12:30pm (EDT). Show us your Mattie Miracle spirit, get your ORANGE on, and take a photo with our Sun Is Shining logo. 

Facebook: https://www.facebook.com/mattiemiracle.cancerfoundation

twitter: @mattiemiraclecf

Instagram: mattiemiraclecf

Friday, May 19, 2023

Friday, May 19, 2023

Tonight's picture was taken in May of 2007. That afternoon, we were having lunch outside on our deck. Peter snapped this photo of Mattie and me, as Mattie was having one of his tender moments. I can't tell you how much time we spent outside on this deck, at all times of year. Mattie gravitated to being outside, and I credit Mattie for my love of the outdoors. 

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

It was another early morning, as I had to take my dad to his follow pulmonology appointment. My dad took a CT scan on Tuesday at the hospital. I did receive his results in my portal, but we had a follow up appointment today with the pulmonologist. This is what I love about scans! You take them to find out about one issue and land up learning about several others. Thankfully my dad's lungs are fine. But the scan showed us he has gallstones and a 12mm kidney stone. 

In May of 2020, in the height of COVID, my dad was rushed to the hospital because he kept falling. In addition to falling he wasn't eating (lost about 30 pounds) and wasn't cognitively intact. It turned out he had a kidney stone blocking his ureter and had developed urinary sepsis. Keep in mind I wasn't overseeing my parents care at that point in time. On an aside, during this hospitalization my parent's primary care doctor asked me..... how did your mom not see this massive decline in your dad? Another doctor I am not thrilled with because the doctor himself hadn't observed my mom's decline either!

It is quite possible that if we intervened sooner with some of my dad's symptoms, we could have prevented the sepsis, the surgery to remove the stone, and a week long hospitalization. During that hospitalization, my dad also developed uncontrollable hiccups, which he had for about three weeks. He got them from the CT scan contrast they used on him. The doctor put my dad on a psychotropic medication to stop the hiccups, which did not work! Needless to say, when my dad came out of the hospital after that week, he had delirium, was a handful to rehabilitate, and unfortunately he moved from early to moderate stage dementia in that short period of time. I credit that cognitive decline to a combination of things.... sepsis, hospitalization and isolation during COVID, and being a psychotropic medication for three weeks. 

I am telling you all of this because the CT scan my dad took this week revealed a pretty big kidney stone. A 12mm stone is close to a half of an inch. The thing is I knew he had a stone in his left kidney from 2020. The doctor told me about it and he was scanning my dad on a regular basis to monitor the stone. However, since my dad moved East, I have been juggling so much that the stone fell off my radar scope. So today, I got my dad an appointment to see a urologist next week. Another specialist added to our alphabet soup. Given that I have had the same issue with stones as my dad, I know that his doctor could have removed the stone blocking the ureter and done lithotripsy at the same time to blast out the one in the kidney. If that had been done, we wouldn't be faced with this now. 

In addition to the non-stop juggling of appointments, needs, and tasks, my dad has been having major issues with bowel movements. In fact, I caught him in the shower this morning, before he was about to go all over the place. When we got to the doctor's office, he wanted me to take him the bathroom again because he felt he had to go! My life has turned into monitoring and evaluating bowel movements, not to mention major clean up jobs! In any case, I feel like I have gone ten rounds this week, my back is killing me, and I am exhausted. Yet I know I have to park that somewhere, because I have another fun filled day of this tomorrow, and the next day, etc! 

Thursday, May 18, 2023

Thursday, May 18, 2023

Tonight's picture was taken in May of 2007. That weekend we took Mattie to a nature preserve. This was a typical weekend excursion for us at ALL times of the year! Mattie wasn't bothered by bad weather, in fact he found it more of an adventure. Before we started walking, I noticed this blue bird statue with binoculars. So I asked Mattie to pose for a photo. I am so glad I did! To me the everyday photos are just as important as holidays and milestone events! Notice that Mattie was wearing an orange jacket. Mattie gravitated to orange right from the beginning, which is why this is Mattie Miracle's official color.  

Quote of the day: We cannot live only for ourselves. A thousand fibers connect us with our fellow men; and among those fibers, as sympathetic threads, our actions run as causes, and they come back to us as effects. ~ Herman Melville

When I tell you that my life could be filmed and become part of a reality TV series, I am not kidding. This morning was bordering on ridiculous. Every two weeks, I have some help with deeper cleaning of the house. In order for the house to get cleaned, I have to start the process earlier with my dad, so that he is downstairs, washed and dressed by 8:30am. Which means I got up at 6am, to make it happen. 

Once I got my dad downstairs, I thought the morning was running smoothly, that is until multiple people started showing up at the same time. Because the house was getting cleaned, I couldn't have my dad doing his physical therapy appointment on the first floor. So I told his therapist that they could work upstairs or outside. She chose outside and she got my dad into the backyard. Which I am happy about since my dad has been refusing to spend any time sitting in our backyard. He kept telling us he did not feel "safe" there!

As soon as I got my dad and his physical therapist set up in the backyard, the exterminator came to spray for mosquitoes in the backyard. When that happens, humans and pets have to go inside for 30 minutes. I practically thought I was going to lose MY MIND. Peter convinced the fellows to wait on the property for an hour until my dad completed his session. Thankfully they accommodated us, because moving my dad around is difficult. 

Meanwhile, Sunny wasn't himself today. He was edgy and pestering my dad and the therapist while they were outside. Totally getting underfoot, so that it was hard to do therapy. I literally had to go out, get Sunny on a leash and take him for a walk around the block to reset his attitude. Which is very unlike Sunny! Of course if I go walking, my mom wants to come too. So again, I helped her with one hand, and held Sunny's leash in the other. Sunny's walking days are slowly coming to an end. It wasn't a hot day, so I can't say he was wiped out from the heat. I literally walked him about two blocks, and he was beyond exhausted. I did not even know if he could make it home. This saddens me greatly because Sunny used to be my great walking companion. 

Now that my parents live with me, it is hard for me to walk Sunny anymore. So I think de-conditioning, being on chemo, and his age, all contribute to the massive decline I am seeing in him. Which overall makes my home a very depressing place to live. 

Wednesday, May 17, 2023

Wednesday, May 17, 2023

Tonight's picture was taken in May of 2007. Super Mattie was helping me with laundry! Laundry for us was a production in our townhouse. I had to bundle it up and use a cart to take it outside to access our elevator (as the laundry room was two floors below us). Naturally I wasn't leaving Mattie behind! So even as a baby, I carried him with me. Of course as he got older, he either walked, rode his bicycle or used some other form of creativity to tag along! Mattie learned the art of doing laundry at a very young age, and I had to make this chore fun in some way in order for him to want to participate!

Quote of the day: Imagine what our real neighborhoods would be like if each of us offered, as a matter of course, just one kind word to another person. ~ Mr. Rogers

I want to give an update on how Mattie Miracle is doing with its Annual Awareness Walk goal. Originally our goal was to raise $100,000! However, thanks to the generosity of our community partners, sponsors, and supporters, I have changed our target goal. Our new goal is to raise $120,000 by this Sunday, May 21. Currently our thermometer reads: $118,408! 

• We secured two $10,000 corporate sponsors this year!
• Received a $25,000 donation from a family donor advised fund!
• We have 18 community sponsors.
• We have 40 individual sponsors.
• We have sold 594 raffle tickets so far. Remember tickets are only $5, and proceeds support our overall goal. 
• We have 34 states participating in our event so far! 
• Reminder: Peter and I will give a FB Live greeting on Sunday at 9:45am. Walk is from 10am to Noon, in whatever time zone you are in. Top walk prizes are all monetary gift cards. Raffle drawing on FB Live is at 12:30pm on Sunday.

It is not too late to get involved in our event. Check out our Walk Website and consider purchasing a raffle ticket as well. Tickets are only $5, and all proceeds benefit the cause. Have you seen our 2022 Walk Video? If not, click on the image below! I am quite certain Mattie Miracle has the best supporters around, and we are grateful. 

Tuesday, May 16, 2023

Tuesday, May 16, 2023 -- Mattie died 711 weeks ago today.

Tonight's picture was taken in May of 2008. That weekend we took Mattie to Calvert Cliffs in Maryland. This is a fascinating nature center, because you literally have to walk over a mile through the woods to get to the Bay. The wonderful part about this beach is that if you dig through the sand you can find fossilized shark teeth. You have to spend some time digging, but each time Mattie visited this beach he was always successful. In fact, Mattie kept a bag of his collected sharks teeth in the kitchen. Our visit there was always a full day endeavor of walking in the woods, time looking for sharks teeth, a picnic on the beach and then a walk back to the car through the woods. I miss these fun adventures.  

Quote of the day: Dementia is a particularly long farewell to the self. With most illnesses, death comes quite swiftly. With dementia, the flicker with which life ends is excruciatingly slowed. ~ Nicci Gerrard

This morning on top of the usual chaos going on, we had the electrician over to put up two of my parent's chandeliers. My parents bought both chandeliers in the 1960s, and when they bought them they were already antiques. So we surmise they maybe at least 100 years old. Any one who knows me, knows I do not like change. AT ALL. I have had to cope with LOTS of change in my life, which maybe why, I just don't like it. 

When we moved into the house, this was the chandelier in the dining room. It had crystals on it, but it was modern, simple, and elegant. I grew to like this chandelier. However, my dad has been pestering me about their chandeliers, which have been sitting for a year in and half in HUGE crates in our garage. Neither Peter nor I could handle the questions anymore, so Peter arranged for our electrician to come over today. 

So I went from the chandelier above to this one. As a child, I remember this chandelier in our dining room. So basically I grew up with this light fixture and I can recall my grandmother up on a ladder cleaning each crystal. She had the patience of a saint. 

My mom bought both chandeliers in New York City, at a store that sold antique chandeliers from Europe. The glass on this chandelier is called aurora borealis, most likely because of the shimmering colors that are reflected from the glass. 

It is a stunning chandelier, and I always loved it in my parent's homes, but I do not feel the same way about it in my space. I am sure in time I will come to appreciate it, but I also know that I have little to no control over my life, and that also applies to decorating my own house. So I get frustrated. 

This is what the primary bedroom used to look like. I am showing the photo so you can see the chandelier that used to hang in this space. Once we moved it, we removed the wallpaper and repainted the room. Given that my parents need a lot of space, they are in the primary bedroom in the house and Peter and I have a child sized room. 

This is their second chandelier that was hung today. The picture doesn't do it justice because the metal frame on the fixture is beautiful. 

My mom had a physical therapy appointment at the hospital today and I had my dad in tow because he had a CT scan for his lungs an hour after her session. While driving to the hospital, I could see my dad in the front seat out of the corner of my eye grimacing. So I asked him what the problem was, and he immediately responded.... I have to poop. Mind you he had three bowel movements at home before getting into the car. Yes my life has turned into one clean up job after the other. 

By the time I got him into the hospital and to the bathroom, he had pooped already. While trying to remove his clothing to clean him, he went again. This time literally all over himself, me, the floor, and the bags I was carrying. I literally had poop all over my shoes, between my toes, and all over my hands. Honestly it was a horror scene and it at times makes me either want to start shouting or absolutely lose it. But that would serve no purpose, as I would still have to clean him, myself, and everything else around me. 

I literally showed up to the physical therapy appointment thoroughly frazzled and smelling awful. I am very sensitive to smells as they can quickly trigger a migraine. I must have washed my hands at least ten times! But hear is the irony of all of this, my dad remembered nothing! Literally five minutes after this was over he had no memory of the nightmare that I had cleaned up. I say good for him, but definitely NOT good for me.

Monday, May 15, 2023

Monday, May 15, 2023

Tonight's picture was taken on Mother's Day of 2007. It is ironic that we still visit this restaurant. Now we take my parents here on a regular basis and visit with Dawn, one of our favorite servers. That day, Mattie posed for a picture and he wanted to show us how he felt about me. So he crossed his arms over his heart, to indicate how much he LOVED me. It was a previous moment in time and I am so glad Peter captured it on camera. 

Quote of the day: We will either find a way, or make one. ~ Anibal Barca

On Mother's Day, I had a conference call with a colleague of Peter's. They are trying to capture stories from caregivers of family members with Alzheimer's disease. I have been included as one of the six caregivers they are interviewing to hear perspectives, insights, and learn what caregivers would want to know before enrolling a loved one in a clinical trial for this form of dementia. I literally had no time to prepare for this interview, which was video recorded. But I took a deep breath and just tried to reflect on my day to day experiences. After the interview was over I actually felt like I accomplished something, other than my usual menial tasks. Not that I am solving any big life issues or problems with this one interview, but what it did remind me was I am gaining insights about this disease that are of value and help to others. So this put me in a better mood. At the end of the day, we all want to be useful, feel like we have a purpose, and make a difference. 

This morning, the day started off badly. My mom and I got into an argument about a bill she had to pay. This was followed right thereafter, by a complete disaster in the shower with my dad. While my dad was in the shower, I took my eye off of him for one minute, to collect garbage from the trash cans in the other bedrooms. This is something that I do routinely every morning. My dad sits in a shower chair so he is typically secure. But this morning, after returning with the trash in hand, I could smell something horrible coming from the bathroom. When I looked in the shower, I saw my dad standing. I knew immediately that he was pooping in the shower, as he stands for NO other reason.

To avoid such messes in the shower, I have put his big hospital basin in the shower for such purposes. As I rather him go in the basin then all over the shower. But of course, since I wasn't in the bathroom to remind him to use the basin, he instead made a mess and was spreading it all over the shower. It was so bad, that he clogged the drain in the shower and he was ankle deep in muddy water. Needless to say I was hysterical. 

Truthfully when dealing with this, I want to jump out the window. It is easy to feel so overwhelmed, with no way to make the situation better. After all I can't rationalize with him. He has NO memory. In fact, once out of the shower, and while I was cloroxing it, he had NO idea why I was doing what I was doing or the fact that he had just pooped in the shower. It is a very frustrating and at times hopeless disease. 

After my dad had breakfast, I got him in the car, and drove him to his memory care program. While helping my dad inside, a woman was watching me. As I was getting back in my car, she waved me over. Since I knew she had just come from the memory care center, I figured perhaps she worked there. Turns out that she is a caregiver to her mom. Her mom just started in the program this week and isn't transitioning well. We exchanged numbers because we both know that the majority of caregivers at this center are spouses, NOT children. So kudos to her for seeking out a fellow adult child to chat with. In any case, I tried to explain to her that this transition to the center is hard and it may take weeks or months for her mom to get used to it. I remember those moments back in March of 2022, when I thought I would pull my dad from the program. But the alternative wasn't great! Him sleeping and stagnant all day at home was not the solution, as I couldn't engage him throughout the day on my own. I knew my limitations and knew I needed help. 

Sunday, May 14, 2023

Sunday, May 14, 2023

Tonight's picture was taken in May of 2009. Mattie created this red clay vase for me and all these tissue paper flowers. He worked on this project with his art therapists, but ironically I never knew about it, until he presented it to me. To this day, I still have this red clay vase in our family room! It reminds me of this precious moment in time and I am grateful for all the legacy items Mattie created while hospitalized. Peter wrote me several beautiful cards today and in one of the cards he reminded me just how close Mattie and I were to each other. Peter said it was palpable! That words weren't necessary, you could just feel our strong bond and connection. Which maybe why Peter's nickname for Mattie was "mama lover." When Peter used to say this to us, it always cracked me and Mattie up!

Many years ago, my friend Denise sent me this Erma Bombeck column on Mother's Day. I found it so meaningful, that I repost it each year on the blog.

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Mothers Who Have Lost a Child - May 14, 1995 by Erma Bombeck

If you're looking for an answer this Mother's day on why God reclaimed your child, I don't know. I only know that thousands of mothers out there today desperately need an answer as to why they were permitted to go through the elation of carrying a child and then lose it to miscarriage, accident, violence, disease or drugs.

Motherhood isn't just a series of contractions, it's a state of mind. From the moment we know life is inside us, we feel a responsibility to protect and defend that human being. It's a promise we can't keep. We beat ourselves to death over that pledge. "If I hadn't worked through the eighth month." "If I had taken him to the doctor when he had a fever." "If I hadn't let him use the car that night." "If I hadn't been so naïve. I'd have noticed he was on drugs."

The longer I live, the more convinced I become that surviving changes us. After the bitterness, the anger, the guilt, and the despair are tempered by time, we look at life differently.

While I was writing my book, I want to Grow Hair, I Want to Grow Up, I Want to Go to Boise, I talked with mothers who had lost a child to cancer. Every single one said death gave their lives new meaning and purpose. And who do you think prepared them for the rough, lonely road they had to travel? Their dying child. They pointed their mothers toward the future and told them to keep going. The children had already accepted what their mothers were fighting to reflect.

The children in the bombed-out nursery in Oklahoma City have touched more lives than they will ever know. Workers who had probably given their kids a mechanical pat on the head without thinking that morning are making calls home during the day to their children to say, "I love you."

This may seem like a strange Mother's Day column on a day when joy and life abound for the millions of mothers throughout the country. But it's also a day of appreciation and respect. I can think of no mothers who deserve it more than those who had to give a child back.

In the face of adversity, we are not permitted to ask, "why me?" You can ask, but you won't get an answer. Maybe you are the instrument who is left behind to perpetuate the life that was lost and appreciate the time you had with it.

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This morning, Peter surprised me with all sorts of cards! One being this Lovepop sunflower card! I love these paper bouquets and I tend to keep them for years on display. As Peter knows, the sunflower is special to me and reminds me of Mattie's care community. As Team Mattie gave me countless numbers of sunflowers while Mattie was battling cancer. These flowers symbolize love, compassion, and community to me. 

One of the gifts Peter gave me is this beautiful necklace. It is stunning, it sparkles, and anyone who knows me, knows that I wear a lot of beautiful things. My butterflies represent Mattie and his presence in my life. 

We took my parents out for lunch today and Cheryl, another amazing server in our lives, surprised us with balloons and gifts. 

My mom on a glorious weather day! 

Peter captured us together!

The four of us. 

When we got home from lunch, my cousin Maureen surprised me with this beautiful basket of flowers. I am so touched by her sentiments and I have to say it helps to be surrounded by such beauty on a day like today. 

It maybe my 14th Mother's Day without Mattie, and though I have gotten used to the feeling of being without his physical presence in my life, I will NEVER get used to fact that Mattie died and certainly celebrating Mother's Day does not have the same meaning. With each year, as a bereaved mom you become more aware of what is missing in your life and that hole is just never filled. 

I received many meaningful messages today, all of which mean a great deal to me. Here are a few:

• When Mattie was alive you were an amazing mom. After his death you are helping to shape a better world in his honor which continues to make you an amazing mom. 
• To an incredible woman... Mattie's mom, Sunny's mom, and caregiver/mom to your parents. Happy Mother's Day, I pray for you to have strength to continue being the strongest woman I know. 
• Of all the mothers I've met in my life, there is something different about you that has stood out to me. It is the innate ability and gift God gave you to soften in the face of pain, devastation and grief. It's not a passive softening or a weakness - No, it is your capacity to drink the bitter cup without becoming bitter, but better. It's your ability to have a soften heart - to learn and give and raise money and share. It's that you choose courage over cowardness, kindness and gentleness opposed to jealousy, envy or retaliation. Do you know how rare this is? I know with all my heart that it was something you've had and developed your whole life - but something about the type of mother you were to Mattie solidified this trait within your soul and I'm awe inspired at who you are - your gentle strength and unwavering love towards those you love and with the worthy causes you pursue.