Thursday, February 12, 2026

Thursday, February 12, 2026

Tonight's picture was taken in February of 2006. How could this be 20 years ago??? Back then anything seemed possible! What I love about this photo was the sheer joy and happiness on Mattie's face. I did not ask him to pose this way, it was how he felt at that time. We were together, playing, and building with Legos! Truly it didn't get better than that, and sadly as a parent of a preschooler, you don't always register how special these moment are, nor do you have the clarity and appreciation that having a healthy child is the greatest gift in life. Mattie's cancer diagnosis and death, gave me clarity for a lifetime. 

Quote of the day: To all the mothers out there who feel overlooked, overworked, unappreciated and under-honored…At some point, every mother has felt this way. Because, given everything that mothers do — and often with no one around — it would actually be impossible to truly honor them in a way that measures up to what they give. So even though you may not get anywhere near the outward acknowledgment you deserve…please don’t underestimate the positive impact you have on those you love. ~ James Van Der Beek

My parents had their annual physicals today at 11am. Thankfully I had the wherewithal to put Mattie's wheelchair in the trunk. I frankly did not think my dad could walk from the parking lot of the hospital to the doctor's office. I was correct! But what I wasn't expecting was the fact that the doctor would be unable to take blood from my dad, and therefore that meant we had to go to the hospital outpatient lab for a blood draw. My dad has rolling veins, which really means that it takes a well trained individual to start an IV or do a blood draw on him. Rather problematic in an emergency! For an abled bodied person, jumping from one building on the hospital campus to another would be NO BIG DEAL. But for my dad, forget it, it is equivalent to running a marathon. I would never have been able to get him to the outpatient lab without the wheelchair. 

Whenever I use Mattie's wheelchair, I naturally remember all our times together using that chair. It is surreal that now 17 years later, I am using Mattie's chair for my dad. As odd as this may sound, I view this as a sign that Mattie is looking out for me! My mom get nervous with any sort of needle, but the outpatient lab at the hospital is fantastic. Every phlebotomist there is excellent, very kind, and they brought us to one room, so that I could assist both of my parents. 

When I evaluate the love, attention, and time that I devote to my parents, it makes me pause. You may think that I am only this focused and devoted with my parents! But the answer is NO (if in doubt, read the blog from 2008-2009, when I cared for Mattie)! If I love you, feel close to you, and I am committed to you..... then this is who I am! There is nothing I wouldn't do for you, even if it means compromising myself. I remember one of my friends from Mattie's preschool, used to say.... when I think of Dear Vicki, I just go ahhhh ahhhh.... her kindness, devotion, and love define her. I will never forget this beautiful comment. I mention this because when you get divorced, it is natural to have self doubts, or blame yourself for the divorce. However, that feeling doesn't last long with me, because I am still in touch with reality check and have a solid understanding for who I am and what defines me.  

Changing the subject, I was listening to the radio this morning and the commentator was talking about the death of James Van Der Beek. I have to admit I did not know who he was other than an actor. What caught my attention was one of his quotes that he shared with his family and friends. Keep in mind that he died of colorectal cancer, and frankly I can't think of anything that levels the playing field other than cancer. Cancer has a way of providing instant clarity to the meaning, purpose, and priorities in life. Here is what he said that stopped me in my tracks.....

“…I had to look my own mortality in the eye [and] I was faced with the question, ‘If I am just a too-skinny, weak guy alone in an apartment with cancer, what am I?’ And I meditated and the answer came through: I am worthy of God’s love simply because I exist. And if I’m worthy of God’s love, shouldn’t I also be worthy of my own? And the same is true for you.” ~ March 8, 2025

I think what is so poignant about this quote is we all ask ourselves at some point.... what am I? Why am I here? As read this quote, I put myself in his shoes and can feel his desperation, his isolation, and his fear. After all, he was away from his family getting treatment, he was unable to work and support his family, and in a way he was feeling like he was letting his kids and wife down. When feeling these depths of despair, it is hard to pull one's self up, and yet he found himself turning to a higher power.... God's love.... and this provided him hope to hold on to and to understand (what I say are the four most powerful words in the English language)..... YOU ARE NOT ALONE!

Wednesday, February 11, 2026

Wednesday, February 11, 2026

Tonight's picture was taken in March of 2004. Mattie was almost two years old. That day we took him to the Children's Museum in Washington, DC. It was our first and last trip to that Museum. That said, we made the best out of the trip, as there were many hands on activities that Mattie loved.... a big sand box, and vehicles for him to climb up and into, such as a fire truck, and even a motorcycle. Life with Mattie was never boring and seeing the world through his eyes made life worth living. 

Quote of the day: Stab the body and it heals, but injure the heart and the wound lasts a lifetime. ~ Mineko Iwasaki

This morning, after getting my dad off to his memory care center, and I situated my mom in the kitchen to have her breakfast, I hopped on a weekly conference call. I have the good fortune to be mentoring Mattie's best preschool buddy, Zachary, on his non-profit college project. Zachary and I are working on story boards for the Foundation, but after chatting about this we then talked about the Foundation and how psychosocial care and support became the focal point of Mattie Miracle's mission. Actually Zachary asked very poignant questions and honestly as I responded to his questions, all I could say to myself was.... WOW...... in 17 years, we have accomplished a lot! A lot on a shoe string budget! 

One of the questions Zachary asked me was whether I had non-profit experience prior to starting Mattie Miracle?! Here's the funny part to all of this..... it is sometimes hard for me to think about my life prior to Mattie's cancer diagnosis and death. Why? I think because it is almost like there is a pre-cancer Vicki and a post-cancer Vicki. The pre-cancer Vicki seems like a completely different person! I had such high hopes for Mattie, I had big plans for my life, career, and our family! These plans came to a crashing halt on cancer diagnosis day. So when Zachary asked me this question, I literally had to pause! I had to think..... what was my life like, and what did my professional experiences entail? 

Short answer is YES I had a ton of non-profit experience before Mattie got cancer. Did you know that I was the:

• President and then Executive Director of the DC Mental Health Counselors Association
• President of the DC Counseling Association
• Advocacy Committee Chair of the American Counseling Association
• Awards Committee Chair of the American Mental Health Counselors Association
• President of the American Mental Health Counselors Association (a professional organization of over 6,000 members)

There are many commonalities in non-profit board work, no matter how big or small the non-profit. Since board work is typically unpaid, you will find across the board that the work is typically performed by one or two dedicated people. This isn't a commentary on the cause, it isn't a commentary on the people, it is just a natural commentary on human nature! Knowing this prepared me well for Mattie Miracle, after all I know that NO ONE is going to be as passionate about the Foundation as Mattie's own mom!!!!

But when I listed our accomplishments to Zachary, it left both of us amazed. Naturally for Zachary, I explained them in more detail, but here's the summary (and there is much more that I am not listing)....

1. We have funded a child life professional since 2011. In fact, we have funded 7 different positions. This person assists 1,500 children with cancer a year. To date, we have contributed over $400,000 to this child life fund. 
2. We run five Snack and Item Carts. These Carts offer free snacks, drinks, and toiletries to families caring for children with cancer. Our Carts serve 2,500 families a year.
3. We offer M&M Wishes to children with cancer. Wishes provide funding for an item, activity or family trip. To date, we have funded over $71,000 worth of Wishes to children in 24 States. 
4. We award therapy support grants to children with cancer, so they can access mental health services in the community. To date we have awarded over $22,000 in therapy support to children in 13 States.
5. We had the vision to create national Psychosocial Standards of Care, because unlike medical care, there was no standard for emotional and social support in hospitals for children with cancer. It was very hospital dependent.... some provide more support than others, mainly because of private philanthropy. We assembled top psychosocial leaders in the field and after three years, paid for the publication of evidence based Standards in a top tier medical journal. 
6. The Standards have been endorsed by 19 national professional organizations and are being implemented in treatment sites around the country. In many cases, we have helped to justify the hiring of more psychologists at hospitals, who need these professionals to help implement the Standards of care. So in essence we have changed the landscape of comprehensive cancer care. Prior to our advocacy work on Capitol Hill, NO ONE was taking about psychosocial care for children with cancer. We changed that!
7. To date, we have awarded over $200,000 in innovative research grants. Grants designed to implement the Standards of Care. Each of these grants have produced publishable research, in which Mattie Miracle was noted as the funder. In some cases, our grants helped researchers obtain pilot data in order to apply for larger NIH grants. Without our grants, such pilot data would not be obtainable!

Look what surprised me at my doorstep today! Cheesecake and chocolates! How can you not smile seeing these goodies. My friend Cheryl, who is connected to me through my former marriage, sent these treats to us. Though we have never physically met one another, she is one of the people who has been a constant source of support throughout my grief journey with Mattie and especially during the last two years of my divorce. On days I wanted to throw myself out of the window, Cheryl would say something that enabled me to pause and take a deep breath. There are no words for that kind of support. As I always say.... you learn about the strength, passion, and commitment of a person when you are in a crisis. 

This is my third Valentine's Day that is approaching in which I am alone. I wish I could say each year, it gets easier. It doesn't! Perhaps it would have been easier, if I was a different kind of person. A person who didn't love, trust, commit, and care deeply. All I can say is my life has been profoundly altered yet again, and just like there is a pre-cancer Vicki, a post-cancer Vicki, there is now a third Vicki..... a divorced and shattered Vicki. 

Tuesday, February 10, 2026

Tuesday, February 10, 2026 -- Mattie died 832 weeks ago today. 

Tonight's picture was taken in February of 2006. Mattie was almost four years old. That afternoon, we were working on creating homemade Valentine's cards for all of his preschool classmates and teachers. Could I have bought Valentine's..... sure! But since Mattie loved to create, like me, I decided that we should try to make them together. Mattie got into it and we enjoyed the process together. Did I ever do this before? NOPE! There were many firsts I did with Mattie. In a way it was like having a second childhood, filled with fun, adventures, and certainly there were challenges, but there was a whole lot of love. 

The final products!

Quote of the day: Love is not maximum emotion. Love is maximum commitment. ~ Sinclair Ferguson

I am on day four of antibiotics. I was doing quite well, but today, I don't feel right. I am back to being congested and exhausted. Of course, I had to put that feeling on the shelf, because my dad had a cardiology appointment at 11am. That time may sound like a doable hour, but I can't tell you all that I have to do to get out of the house by 10:30am, to get this 11am appointment. Seriously by that time, I felt like I went ten rounds. 

I am so fortunate that the cardiology office wants to actively follow my dad. In fact, on Saturday, I pushed them data from my dad's pacemaker, because we were concerned by his elevated heart rate. While he was participating in his physical therapy session on Saturday, he was gasping for air, breathing very hard, and we literally stopped the session and then monitored him for thirty minutes. His heart rate spanned 61 beats per minute to 134 beats per minute in a short time period! The therapist was very concerned by what she was seeing and it was at that point that I used the pacemaker app on my phone and pushed data in real time to the clinic! 

Today's visit reviewed that data, my dad got an EKG, and we discussed various issues he is facing. I saw this nurse six weeks ago. From the last time she saw us, my dad was hospitalized again. This time for norovirus. In six weeks, my dad has lost 9 pounds and the nurse believes between being dehydrated from the norovirus and being inactive in the hospital, this could explain his high heart rate with any activity. She changed up his medications and will be seeing us in two weeks. 

While sitting and talking to Lanna, the nurse, I could feel myself fighting back tears. Not for any particular reason other than sheer exhaustion, being overwhelmed, managing the impossible alone, and knowing that I face a future alone, without my other half. Something I will never accept and come to terms with. Lanna has no idea about the tragedy that is my life, she is only aware of the patient in front of her whom I care for and manage. However, for her, that is more than enough.... as she is very aware of the multiple hospitalizations and the round of clock care I provide my dad, NOT to mention my mom as well. 

Honestly other than this appointment, and taking my parents out today for frozen yogurt, I couldn't manage much else. I am tired, strung out, and when I allow the window to open (which I rarely allow) into the bleak trajectory of my future, I  become paralyzed with emotion. Which is where I am at today. 

Monday, February 9, 2026

Monday, February 9, 2026

Tonight's picture was taken in February of 2004. Mattie was almost two years old. I snapped this photo because Mattie was jumping on the couch like a trampoline. When I was his age.... I LOVED doing this too. Except I remember my grandmother and mom telling me to stop, as they were afraid I would literally break the bed and furniture. Since I knew how much I loved doing this, I did not stop Mattie. My concerns however was always his safety. So I did my best to make sure Mattie wasn't going to fall. I watched Mattie like a hawk, and yet there was NOT ENOUGH HOVERING and SWOOPING I could do to prevent him from being diagnosed with childhood cancer. 

Quote of the day: All human wisdom is contained in these two words - Wait and Hope. ~ Alexandre Dumas, The Count of Monte Cristo

Last night, after I got my parents into bed, I went to my room, Indie of course was in tow, and together we watched the Hallmark Movie, The Way to You. The premise of the movie is................After a subway blackout in New York City, Emma and Conrad connect and decide to help one another find the people they missed connections with, only to discover their own connection may be stronger.

It was a charming movie and within the movie, one of the characters loved the book, The Count of Monte Cristo. The other character had never read it, so she decided to read it and the famous quote from the book was shared with the audience. It is the quote I posted tonight. Two powerful words.... wait and hope. Without understanding the context in which Alexandre Dumas wrote this famous line, you maybe left to your own interpretation as to why these two words are so meaningful. Certainly in any context we find ourselves..... don't we want to wait and hope!? It is like two bookends to any problem! When there are no easy answers, when we are at our wit's end and unsure how to proceed.... many of us wait. We give it time, with the HOPE that things change or solutions present themselves. This of course is a valuable message in and of itself. 

But when Dumas wrote about wait and hope in his book, he had a very specific context in mind..... vengeance and revenge. Specifically, Dumas has Monte Cristo acknowledge that God is the only one who can act as Providence, the only force that can hand out people’s fates. Humans, rather than taking God’s task into their own hands, ought to simply “wait and hope” that God does indeed eventually reward the good and punish the bad.

To me, understanding the context of this quote is very poignant. As humans, when we feel violated, harmed, or wronged, our instinct is to PROTECT ourselves and seek revenge. I think this is a natural reaction and present in many of us initially after being hurt. Certainly many people take revenge into their own hands.... just turn on the news any given day. But ultimately seeking revenge means you are stooping to the level of your perpetrator. This will NEVER be me, or let's put it this way, I have a stronger moral compass that guides me and like Monte Cristo reveals in Dumas' book..... I believe God sees everything and is the ultimate decision maker. So in some cases, I leave my anger, pain, and disgust in God's hands. 

When your heart has been broken, when you have given trust away and that trust has been betrayed, it impacts every aspect of your life. It definitely affects how I see and trust others, it makes me more cautious, and I find I am safer alone, locking out others and the chances of such horrors ever happening again. This maybe why I watch Hallmark movies. In these movies...... couples communicate, they share emotions, they share truths, there is commitment, and commitment means something, they find common ground, and THEY ALWAYS LAND UP TOGETHER. There are no unhappy endings with Hallmark, and in a world in which we have countless unhappy moments, it is refreshing to take a pause from hurt. 

Sunday, February 9, 2026

Sunday, February 9, 2026

Tonight's picture was taken in February of 2004. Mattie was almost two years old and since it had just snowed, Mattie wanted to be outside and exploring the white stuff. I would say that Mattie was happiest when he was outside in nature... it did not matter the weather. This was one thing I had to adjust to, because I dislike the cold, not to mention the rain, but those things did not bother Mattie. Therefore, I would say that Mattie expanded my comfort zone and if something interested him.... I learned to appreciate it too!

Quote of the day: You don’t raise heroes, you raise sons. And if you treat them like sons, they’ll turn out to be heroes, even if it’s just in your own eyes. ~ NASA astronaut Walter M. Schirra, Sr.

The best thing I did this weekend was to contact my doctor's office on Saturday morning. Typically I do not pay attention to how I am feeling, but on Saturday, I felt like a 30 pound weight was on my chest, I realized I hadn't slept well because I was congested and drowning in fluid, and what stopped me in my tracks was I had NO ENERGY to perform my caregiving duties. It was that fact that got me to think about my health and to pursue medical attention. 

After two doses of antibiotics, I was able to sleep last night and I woke up congested but I could function. As I am typing this tonight, I realize that my energy is coming back! I am not one for napping and slowing down, but yesterday I took to bed. When this happens, you know that I am sick. It was a scary feeling to be depleted of energy, especially since I do have the energy of about ten people. When I am that drained, I worry.... will I always feel that way? Thanks to the power of antibiotics....I am bouncing back. 

I was able to take my parents out to brunch today. Which was a God send, because yesterday we spent the entire day at home, and between seeing the frozen snow, hearing the howling wind, and feeling sick, it wasn't good for my mental state. By the time I got home, I realized I still had energy. A true gift, because I had promised to do my mom's hair and give her a pedicure. Mission accomplished. 

This is an area of my kitchen which I try to decorate for the season or holiday approaching. I received some lovely Valentine's gifts! When I told the wonderful gift giver  that Lindor chocolates are one of my favorites, her response to me was..... "You are our favorite!" Given who this gift is from, this sentiment meant the world to me. The best Valentine's gift ever.  

Saturday, February 7, 2026

Saturday, February 7, 2026

Tonight's picture was taken in February of 2004. Mattie was almost two years old in this photo. That weekend we took Mattie to the US Natural History Museum. In the rotunda of the Museum is a 2-ton, 14-foot-tall African Elephant on display. The elephant is nicknamed, Henry. Mattie and I were looking up at Henry. Personally I think Mattie's eye's and facial expression said it all! He was amazed that an animal could have been that big!

Quote of the day: People will work eight hours a day for pay, 10 hours a day for a good boss, and 24 hours a day for a good cause! ~ John C. Maxwell

All week I have been struggling. It started with what looked to be a head cold. My head was filled with fluid, I had pressure around my eyes, and a low grade fever. No matter what I threw at this problem, it wasn't addressing the symptoms. In fact, the symptoms were getting worse, as this congestion moved to my chest, and I have developed a non-stop post nasal drip and dry cough. This morning, I had to get up early because my dad had his physical therapy session. Truly how I got up and did anything is beyond me. However, once I got him showered, dressed, and at the breakfast table, I decided to swab my nose for COVID and Flu and then call my doctor. Based on my countless calls to my parents' doctor, I know NOT to call a doctor without having COVID and Flu data in hand. 

I tested negative to both and it confirmed what I believed was my issue..... I have a sinus infection. Clearly it wasn't going to get better without intervention. I called my doctor's office and within ten minutes the doctor on call contacted me. He said my message was so detailed (as I told him every symptom, how I was treating each symptom, and that I am a caregiver to my parents), that he agreed I have a sinus infection and immediately called in antibiotics for me. Bless him!

Of course, this is the one of many reasons I hate being single. I do not have my other half present to support me, to jump in the car and go to the pharmacy and help me manage things in the house so that I could potentially rest and recover. I don't think time will ever wash over this feeling of disgust, anger, and sadness over my divorce. 

When my dad's physical therapist arrived, we chatted. She couldn't get over my last two weeks.... my dad getting Norovirus, my dad getting hospitalized, my dad having hiccups for 12 days from the virus, my dad developing Tardive Dyskinesis from hiccup medications, and of course me getting Norovirus and now a sinus infection. SERIOUSLY it is overwhelming. However, because apparently I am not dealing with enough, my dad's heart rate today has been inconsistent and unstable. Even at rest, his heart is racing, at 115 beats per minute (a normal pulse is 60-100). My dad does have Afib and it has been managed with his pacemaker and medication, but now very little is helping, especially since I learned in his last hospitalization that he has congestive heart failure. Many symptoms of heart failure are caused by extra fluid, or congestion, in the body. Symptoms may include shortness of breath even while doing simple activities such as walking; waking up breathless during the night; coughing; swelling of the legs, feet or abdomen; excessive fatigue; and early satiety, meaning you can’t finish a meal because you fell full very quickly. My dad has all of these symptoms and what I am also noticing is that even at rest, his pulse is high. He has a cardiology appointment on Tuesday, so today, I am taking his blood pressure and measuring his pulse throughout the day. 

Any case, it is 4:20pm, and I am migrating away from the computer and I hope to rest before I have to contend with dinner. May the antibiotics perform their magic!

Friday, February 6, 2026

Friday, February 6, 2026

Tonight's picture was taken in February of 2003. Mattie was 10 months old and he absolutely loved zooming around our first floor in his "tot wheels." He was a curious fellow, who enjoyed opening drawers and exploring what was inside. All I can say is that life with Mattie was NEVER boring. He was full of life and packed a lot into his seven years on this earth. 

Quote of the day: Devotion is the purest form of giving. ~ Eckhart Tolle

This morning, after I got my dad showered, dressed and downstairs, we were sitting at the breakfast table awaiting his in-home nurse visit. I should mention that on top of everything else I am juggling, I have been dealing with one pressure sore after the other with my dad. Just when one heals, another pops up, or we start the cycle all over again with previous sores opening up. It is a non-stop battle to keep him clean and dry. I have no idea how I would manage my dad if I couldn't shower him each day. The shower gives me half a chance to keep his skin clean and intact. 

Any case, back to the breakfast table. My mom gets a newspaper delivered to the house each day. My dad wanted to look at the paper. I handed it to him, and he looked at one picture and then tossed the paper. So I asked him what did he see? The answer was NOTHING! This led me to pick up the paper and see what was on the front page. 

Ironically what caught my attention was...."Cemetery Offers To Turn Loved Ones Into Gardening Soil." Seriously when I read this, I thought this was a joke. Therefore, I kept on reading. It is no joke and apparently in the USA, 14 states have legalized human composting, starting with Washington in 2019. There are many reasons this new format is being introduced and proposed, such as:

1. Cemeteries are running out of space for the growing need for plots
2. People are looking for more earth friendly (biodegradable) options
3. More cost effective than a burial (as a burial can be $30K or more)

I honestly do not know how I feel about this, because the process of composing human remains, means going into a vat like structure for 40 days, being rocked back and forth. These vats are housed in big rooms, and family members are allowed to come visit the vats and sit by the body as it decomposes. I don't know where I stand on that idea! The notion is that once decomposed, the remains can be used to provide fertilizer and nutrients for the greenery of the cemetery. Proponents of this feel like it gives people "agency" over their death and how they will be remembered. 

Naturally, religious minded groups have issues with this notion, as it is not deemed to be pious and respectful of the human body. While several Funeral Home Associations are raising concerns about the regulation of the resulting human soil. Some of the states that allow human composting prohibit using the resulting soil for growing food crops. To me, how you manage a loved one's death is a very personal choice. However, what I do know is that a funeral and burial are really for those left behind, not the dead. Once dead, you have NO agency! So I think if one decides this is the option they want to go with, a discussion with family would be important. 

If you are interested, you can check out this short news clip on this topic below. But for those of us like me, who do not have a spouse or children, the notion of our death brings about a host of feelings. There will be no one overseeing what happens to us when we die. I have a friend (whose husband up and left her after many decades together) who jokes with me that when she dies, she will sit on a shelf at a funeral home unclaimed. That may sound like a joke, but in our case this is a sobering reality. So perhaps for me becoming one with the earth is a peaceful notion, because I believe God will accept my spirit into heaven regardless of the physical form of my body. 

Thursday, February 5, 2026

Thursday, February 5, 2026

Tonight's three photos were taken in April of 2002. Our apartment had two bedrooms and over the course of Mattie's life with us, we used these rooms differently. When we brought Mattie home from the hospital, his crib and set up was in our bedroom. Since we had Patches, our calico cat, I was nervous that she would jump in the crib when Mattie was in it, so we put this tent over the crib. However, I should have known better, as Patches simply understood that she had to be on good behavior around Mattie. She never tried to jump on him! However, the tent became a God send because as Mattie started to stand up, it prevented him from falling out of the crib.... he was a climber!

I think what I love about this photo was that Mattie looked so peaceful in his crib. I assure you this was only for the first couple of days of his life. Thereafter, Mattie hated lying on his back and being in his crib. Instead, he spent his first three months sleeping on top of me. 

If you look at the first photo I posted tonight, you will see that Patches pouch was by the window sill, right next to Mattie's changing pad. She loved this bird's eye view. The best cat ever, and Mattie loved her. 

Quote of the day: Devotion is loyalty to a promise, no matter how small it seems. ~ Shams Tabrizi

This morning it took all the energy I had to get out of bed. My head is filled with fluid and I fear that I have developed a sinus infection. To get through the day, I am on Tylenol, Advil, and a nasal decongestant. Resting is just not possible in my home. I am hoping to manage this without seeing the doctor, but I shall see. 

My dad had his physical therapy session today at home and this particular therapist truly inspires him to perform. He had a good workout for an hour. If I could only hire her 7 days a week. Nonetheless, I am convinced that the only reason my dad can still walk is because he has been doing therapy since 2020. It is a sad commentary that with dementia, there will come a time when my dad will no longer remember how to walk. I take it one day at a time, and adjust to whatever his condition seems to dish out at me.

It was a day of dealing with a ton of administrative issues for the Foundation and tonight, I am going to spend the next hour or so, emailing all of our corporate sponsors. It seems like the only time I have to concentrate is in the evening, when all my parents' needs are met. I am signing off for tonight, in hopes that I physically feel better tomorrow. 

Wednesday, February 4, 2026

Wednesday, February 4, 2026

Tonight's picture was taken in April of 2002. Mattie was just a few weeks old! Honestly I did not know if I was coming or going at that point in time. There are great books that prepare you for all the stages of pregnancy, but there is NOTHING that helps guide you on the complex journey of motherhood. Mattie was born by c-section and my recovery from abdominal surgery was challenging at best, on top of which, I developed post partum depression. How I felt did not impact my love Mattie or how I cared for him. But I recall the feeling of crying at the drop of a hat (and I am NOT a crier), feeling overwhelmed, isolated, and distraught. In fact, I was so distraught in the hospital that after 5 days post c-section, the nurse felt that she could justify more time inpatient until I emotionally stabilized. However, I elected to get discharged because something told me that I had to figure this out on my own. When I look at this photo of Mattie, what immediately comes to mind is..... he initially looked NOTHING like me. However, by the time he was three, there was no doubt..... Mattie was the spitting image of me.  

Quote of the day: It's easier to take than to give. It's nobler to give than to take. The thrill of taking lasts a day. The thrill of giving lasts a lifetime. ~ Joan Marques

This photo was taken in May of 2009. Back then Team Mattie planned a "March" on the school's track and field. Mattie's community wanted to show their support of us and in the process it was also a fundraiser. There must have been over 500 people in attendance. It was a full day that included a formal program in which we spoke and gave out appreciation gifts to all of Mattie's nurses and psychosocial team. My joke on that day was...... is anyone left at the hospital? I was joking, but our medical family was there in full force. This particular photo was taken at the end of the event. This was Mattie and his best preschool friend, Zachary. 

Why am I showing you this photo? Because I now have the pleasure of working with Zachary on his school project. Zachary is taking a non-profit course which requires him to shadow a non-profit leader. Zachary reached out to me. When I tell you it is a surreal experience, I am not kidding. Mattie and Zachary were very close in preschool, and they enjoyed their time together so much that after school each day, they had a playdate. I felt, in a way, that Zachary was like a second son to me, because I knew his likes, dislikes, preferences, and could predict his responses to certain things. 

During Mattie's cancer journey, Zachary always visited and instinctively adjusted his play to match Mattie's physical abilities. There was a lot to be learned from their friendship, and it was such a special bond that I am quite certain it will always remain a part of me. But I knew Zachary as a child, not Zachary the young adult. 

It is a wonderful opportunity for me to have this time to reconnect with Zachary, and as I interact with Zachary now, I wonder.... would Mattie be just like this? After all these boys were so much alike, that I feel like I am getting a little bit of a glimpse into what Mattie would have been like at age 24! Which in and of itself is an incredible gift to a bereaved mom. Naturally when Zachary met me, he was at a tender age (4), and most likely doesn't remember our time together like I do. Which is why I am always cognizant as to not overwhelm him with my own emotions. That said, it means a lot to me that Zachary wanted to shadow me versus another non-profit leader. 

I love hearing Zachary's perspective on fundraising, and what activities would attract his age group to Mattie Miracle. This week we had our second conference call together and I invited another key Mattie Miracle supporter on the call with us, as we are slowly pulling together a group of supporters who are willing to fundraise for us and brainstorm fundraising events and opportunities. 

Though my days are full with caregiving and other chores, these Zoom calls with Zachary have perked me up. I think that reconnecting with Zachary has in essence brought back happy memories in Mattie's history for me, and I consider anyone who interacted with Mattie to be a Mattie Legacy Keeper!

Tuesday, February 3, 2026

Tuesday, February 3, 2026 -- Mattie died 831 weeks ago today.

Tonight's picture was taken in January of 2002. It took me months to clear out this space, as my desk used to be where the crib was and I had books and things all over the place. Slowly but surely, things got organized, filed, thrown out or donated, and my parents and I purchased the crib, baby furniture and linens. Ironically to this day, Mattie's bureau is in my bedroom and I use it for my things. Notice I put up a Hey Diddle Diddle border by the crib area, because I always loved black and white cows. But what strikes me now about this is..... there is a moon in this nursery rhyme. Who knew this would eventually be Mattie's symbol in preschool and a name that we still use today..... our MATTIE MOON! 

Quote of the day: Tell your friend that in his death, a part of you dies and goes with him. Wherever he goes, you also go. He will not be alone. ~ J. Krishnamurti

I woke up later than usual today because I am struggling with a head cold. Though I thought it was going to be a more even paced day, it wasn't! I started the morning by changing the linens on my own bed. I am so busy keeping up with my parents' bed linens, which is a large chore, that I do not change my sheets as often as I used to. This morning, I had just about enough, and decided.... no I am taking the time to do this for myself! Especially with a head cold! Indie spends so much time on my bed, by my pillows, that I am breathing in fur! But as I have learned no good deeds go unpunished. 

Throughout the morning, I checked on my dad twice in bed. In fact, one time I got him up to reposition him, so his back wouldn't ache. By the time I got myself showered, dressed, made breakfast, cleaned out the litter box, and cleaned up the first floor, I must have gotten back upstairs to my dad at 10:30am. So later than usual. As I went into his room, I saw the disaster awaiting me. It wasn't as bad as when he had Norovirus last week, but it was bad enough. No matter how well I protect the bed, he soils all the linens, it lands up all over the bed rail, the bed frame, and the box spring. Truly I wanted to cry over seeing this, because it took me a week to clean, disinfect, and air out their bedroom while my dad was in the hospital. The only advantage to today, was I knew exactly what I had to do to address this mess! But I wasn't happy, as that set me up to strip their entire bed (AGAIN!), and do five loads of laundry. Not to mention hours of cleaning and I got the fans out and had them running all day! Of course while I am doing this, my dad is clueless. He has NO understanding for what just happened, the amount of effort it takes to clean him and everything around him, and most definitely has no memory of last week much less today. 

Seeing the drastic changes in my dad are sobering. Let me put some things into context for you. When we go out to lunch with my parents, I tend to do activities with my dad. Otherwise, he sleeps at the table, my mom is glued to her phone, and it leaves me in silence. 

Yesterday, I tried to do this 'find the object' activity with my dad. Even coaching him through it, was close to impossible. He couldn't remember what the purpose of the activity was and truly he was lost in his own mind. This is a significant change from just a few months ago, where he used to like doing such activities. 

Two days ago, I tried to do this activity with my dad, which was to look at both pictures and find the differences between the two of them. You would have thought I was asking him to discover the cure for cancer. It was that difficult to think through the process and come up with some observations. I even color coded some objects to help him, but that accomplished nothing. 

Overall, another sad day in a sea of sad years. There are great differences between seeing Mattie die and watching my dad's decline. I know the outcome with eventually be the same, but the journey is different. Nonetheless, it is so unfortunate that in all my caregiving experiences, the patient never gets better. Instead, I am learning the painful art form of helping someone live with as much dignity and  as in little pain as possible before their death.