Tuesday, June 16, 2026

Tuesday, June 16, 2026 -- Mattie died 850 weeks ago today.

Tonight's picture was taken in June of 2006. Mattie was four years old and that weekend he and his preschool buddy, Zachary, attended the Day out with Thomas event in Pennsylvania. Mattie and Zachary were huge Thomas the Tank Engine fans! I absolutely love this photo! To me it showed two good friends walking side by side and with purpose.... as they were very excited to see the life sized Thomas train!

Quote of the day: Imagine spreading everything you care about on a blanket and then tossing the whole thing up in the air. The process of divorce is about loading that blanket, throwing it up, watching it all spin, and worrying what stuff will break when it lands. ~ Amy Poehler

I came across this quote tonight. I am not sure if the author of it was focused solely on the tangible items one can put on the so called blanket of divorce. But I would say the material items on the blanket being tossed up in the air are bad enough but it is the intangible items, that are far more painful to address. In fact, I would say that the emotional toll of a unexpected divorce are long standing and will forever be a part of me. 

Today was a total blur. I managed a visit with the nurse, who is still helping me manage my dad's pressure sores, and in between tasks, I reviewed grant applications for the Foundation. Perhaps it is my current state of affairs, but NONE of these grant proposals interested me. Fortunately I work with a professional team of researchers who also review these proposals objectively and then discuss their findings with me. There are times in life, that I truly need to be grateful for the help of other amazing women in my life.  

I went outside to water my plants today and the yellow "Father's Day lilies" are blooming. We bought these lilies decades ago, when we first moved to Washington, DC. So I am saying these flowers go back to 1994! When we moved in 2021, we took the lilies with us to the house! These lilies bloom every year around Father's Day. Which is how they got their unofficial name. At one time, these lilies were a tribute to Mattie's dad (when Mattie was a live). After Mattie died, they were still a memorial tribute to being a father, and now I look at these flowers and say to myself..... I have lost both of them! Seeing these lilies bloom is terribly upsetting, and it leaves me wondering how can the flowers remain but nothing else??

Monday, June 15, 2026

Monday, June 15, 2026

Tonight's picture was taken in June of 2006. Mattie was four years old! This was a typical weekend view! We would visit Roosevelt Island, which was minutes from our home. Mattie loved exploring the Island and we all enjoyed the boardwalk. It is a small piece of paradise, so close to the city, and yet filled with bird and wildlife traffic! 

Quote of the day: Doctoring her seemed to her as absurd as putting together the pieces of a broken vase. Her heart was broken. Why would they try to cure her with pills and powders? ~  Leo Tolstoy

This morning, after dropping my dad off at his memory care center, I took my mom to the city for us to get haircuts and nails done. I take my mom to city about every six weeks. Prior to my divorce, I used to get my haircut, once a year! However, after my divorce I learned was this was not good for my hair, and that hair needs to be cut every three months. So now, I try to schedule this every three months. I am great at caring for my parents and not as good at looking after myself. 

While at the salon, I had the opportunity to chat with the stylist. Her grandson is sick and though others chat with this stylist, they had no idea what she was facing. However, I got to hear her story and what her family is facing. Why do I think people share their problems with me? I think people feel more comfortable sharing health crises and concerns with me because I know all about sadness, I know all about crisis, and I certainly know all about medical trauma. There isn't much you can tell me that will shake me, and because of my journey with Mattie, I have a deep understanding for the range of emotions that result from a life altering diagnosis. 

But the bottom line is the women in the salon view me as a strong woman. A woman who has survived child loss, a woman who is surviving the loss of her husband, and a woman who is managing the care of her parents. It is a ton of loss that travels with me daily. After the salon, I took my mom to Starbucks for tea before picking my dad up. When we walked into Starbucks, all the baristas and the manager told me how wonderful I looked. They knew right away that I got my hair cut, and seriously after all their comments, the rest of Starbucks knew too. It had me laughing!

When I got home, I went upstairs to my bedroom and recorded this two minute video. One of the researchers and clinicians I have worked closely with since 2011, is retiring. A link to upload videos was sent to me, and the request was that it had to be done this week. So I tried to compose myself and recorded this message! My hope is that Lori knows how much she has transformed my life and has helped to ensure Mattie's legacy through the Psychosocial Standards of Care. 

Sunday, June 14, 2026

Sunday, June 14, 2026

Tonight's picture was taken in June of 2004. Mattie was two years old and that week we took him to Boston to visit his grandparents. Summers for us were spent doing trips to Boston and California, to reconnect with family. One of the things Mattie loved to do was interact with nature. So we went to the local pond, with bread in tow, to feed the geese and ducks!

Quote of the day: I don’t know why they call it heartbreak. It feels like every other part of my body is broken too. ~ Terri Guillemets

I could hardly move this morning. I was that exhausted. But by 6:30am, Indie was screaming outside my bedroom door and when I wasn't moving, she then threw her whole body against the door. She will do that until I wake up! I certainly love animals, but I sure wish they understood sometimes that sleep needs to happen! Mind you Indie has access to dry food 24/7! But what she really wants is for me to be up!!! She is better than an alarm clock. 

It was one thing after the other today, and by 5pm, I needed a break from bathroom runs and demands. So I went outside in the heat and washed both cars. Though I am exhausted, I just can't rest by day. I have to be conscious and functioning to managing my parents and frankly there are too many chores around the house that need to be addressed. When I got back inside the house, the next crisis arose.... the cable froze. I love how my parents view me as the person who can solve and address all problems! Actually, NO I CAN'T....  but if I don't do it, no one else will. I am absolutely sick of being the point person for everything. I am not used to this, nor did I chose to live my life as a divorced woman. 

On an aside, I took my parents out to brunch today. The server, who I have known since 2021, visited with us. She was telling us about her daughter, who she hopes will get married soon, mainly because her daughter is getting older and her window to have children is closing. I listened to her story and empathized. But once she left, I was surprised by my inner dialogue which I shared with my mom. My inner dialogue basically said, why get married? This person will only leave you in the end! Certainly my story is not the average married woman's story, but I am that devastated that I no longer advocate for the union of marriage. I see no benefits in getting married, but can only list the financial burden of dissolving such a union. I can't tell you how costly the whole divorce process has been and unfortunately the hits keep coming with a mortgage assumption. I have no idea if I will even get approved for the assumption but what I do know is the closing fee is down right hysterical. It is hysterical because I will be paying a hefty fee to assume a mortgage on a house I ALREADY OWN! Something is very wrong with this system.

Saturday, June 13, 2026

Saturday, June 13, 2026

Tonight's picture was taken in June of 2002. Mattie was two months old. As you can see we were having a peaceful moment outside on our deck. Truthfully back then I had no idea if I was coming or going. I was exhausted as Mattie rarely slept and I was recovering from abdominal surgery. Yet in comparison to my life now, I would welcome turning back the hands of time, and reliving this exact moment again and again!

Quote of the day: Just as it is impossible to explain childbirth to a woman who has never given birth, it is impossible to explain child loss to a person who has never lost a child. ~ Lynda Cheldlin Fell

I think I finally got to sleep at 2am. Friday was a nightmare of a day, with mortgage assumption paperwork and then losing power. We have a generator for a reason, but last night it wasn't working and just like with any crisis, I first panic. But I quickly can regulate from panic to action and thankfully I called my electrician. Yes I have his cell number and YES he actually answers whenever I call. It is thanks to Bob that our generator was up and operational by 9:30pm. Which is good because our neighborhood did not get power restored until 9:30am today! 

What I have learned is that without electricity, I have no cell phone service, I can't access email or the internet! Why? Because our neighborhood has poor cell reception and therefore I need wi-fi. I truly feel this is a safety concern, especially when caring for my parents. But what also was a rude awakening was I truly did not know where our flashlights were in the house. Yes I have one or two, but not enough to give off light. I never used to worry about this form of preparation because my other half excelled in this. So even a blackout can be an emotional experience for me, and what it drove home once again is how alone I am! I did round up flashlights and thankfully I have many oil candles! But I do not wish to relive such intense stress like last night again. That said, I am purchasing larger flashlights for the house and I think it is important to always have gasoline in one's car, because with a power outage, it is impossible to get gas. Given that I make many trips to the ER with my dad, I always have a pretty full tank of gas, because I never know when the next emergency will hit. This gives you some understanding for my internal dialogue. A dialogue that is always hyper alert, awaiting the next shoe to drop. Unfortunately in my case, it typically happens. 

This evening I made cookies. My new tradition is for every birthday, holiday, and event, I send my former in-laws cookies. I used to purchase them gifts of all kinds over the years, but now I think baking something from my kitchen and sending it to theirs is appreciated. It seems to perk up their days and I certainly know how I feel when I get a cookie. I made the classic chocolate chip and in my note I wrote.... a classic cookie for a classy dad!

Friday, June 12, 2026

Friday, June 12, 2026

Tonight's picture was taken in June of 2003. Mattie was a year old. That weekend we took him to Great Falls Park. This Park has it all..... from wildlife to rapids and waterfalls. Though I tried to take a photo with Mattie, you can see that he wanted to get down and explore everything that caught his eyes!

Quote of the day: There comes a point where you no longer care if there’s a light at the end of the tunnel or not. You’re just sick of the tunnel. ~ Ranata Suzuki

All I can say is................DEAR GOD! I truly can't make up the kind of day I have had. It is 11:30pm, and I have had NO dinner and have been strung out for hours. The day was moving along as usual, until I got home with my dad at around 4pm. It was at that point I got an email and a phone call from my mortgage agent. Just when I think the round of questions and additional documentation will stop, or I will get a break from it, NO... MORE gets piled on me. Today's request was over the top, because it required documentation from my parents. Documentation I did not have. My typical mode of operation now is PANIC and ANXIETY. After I flip out, I then attack the problem. I am absolutely sick of problems and crises. It is wearing me out. 

While trying to compile documentation, we had a massive storm. The storm took out our power! Normally that wouldn't be a problem, as we have a generator. But the generator wasn't working. Without power, my mom was going crazy. As in my house, we have poor cellular service and we need Wi-Fi. Without Wi-Fi, nothing works. So I was dealing with my mom, who was walking around in circles, my dad was asking the same questions over and over, and I knew I needed a solution. As it is very hot out, I knew we couldn't stay overnight in the house without air and electricity. It was at that point, I reached out to my electrician. I couldn't text him, as I had no Wi-Fi, so I walked around outside until I got a bar of cellular service and I called Bob. He answered immediately and asked.... what's wrong! He was at home, with his granddaughter, but he could hear I was distraught. He called his company and he had them dispatch a generator specialist to the house. Thankfully Shaun showed up in 90 minutes and diagnosed the problem. I must have been so hysterical that he gave me a free battery replacement. As I told him, he is my generator angel! It is thanks to Shaun that the generator is working and we have lights and are operational.

But in the process of losing power, this impacted my alarm system. I spent the next two hours on chat with an agent doing a step by step process! Thanks to this wonderful person, I resolved that problem too! It is now 11:40pm, and my nerves are shot! It is a horrible way of living and I see no light at the end of the tunnel. Just more tunnel!

Thursday, June 11, 2026

Thursday, June 11, 2026

Tonight's picture was taken in June of 2002. Mattie was two months old. Giving birth to Mattie literally took me over 24 hours, and then I landed up having an emergency c-section. While having the c-section, a large (non-cancerous) tumor was found on my bladder. Therefore I needed surgery on that right after the c-section. Recovery from abdominal surgery was very challenging and in addition to that, I was facing postpartum depression. Not having family that lived locally, I did not have support with a newborn. So despite how I was feeling, I learned that I had to rise to meet the beauty and challenges of motherhood. As I always say, Mattie was my life's greatest teacher. 

Quote of the day: Hearts will never be practical until they are made unbreakable.  ~ The Tinman, The Wizard of Oz

Given that I spoke to my mortgage agent a day ago, I figured I would get a break from him for the rest of the week! WRONG! Seriously when I see that 1-800 number calling me, it triggers instant panic. Today I was out at lunch with my parents. So in essence I was juggling a lot, and don't you know it, the agent called me. No matter what I am doing, if I see that number ring through on my phone, I immediately pick it up. 

Today's call was a total pip! He wanted immediate information! Information I couldn't give him because I was out! I was then told, I had to supply this information today, otherwise they would close my application! All I can say is ....... DEAR GOD! I then told him I would be home within an hour and would get it done. That was bad enough, until he told me some of the questions the bank has, meaning they don't believe that my parents actually live with me. I admit my situation is on the more unique side of the equation..... as not every adult child is the full-time caregiver for her parents. I literally wanted to invite him and the bank to my house, so they could see what a nightmare I live each day! 

I then told him that this whole application process is stressing me out. I can't help that I am divorced, nor can I help my financial situation. Of course the bank could care less! But I told him my current life situation is a product of great loss and trauma. He and the bank don't care, but I am very tired of being judged as the woman who doesn't work and I feel like they think I sit around all day eating bon bons! I should live so long. That is and was NEVER me. I have always worked hard at whatever I do, and though my bank account doesn't reflect that hard work, don't discredit my existence in such a demeaning manner. 

Any case, I got home, fully changed my dad, got my parents situated, and ran to my computer to manage all the requests. In addition to the incredible stress this mortgage assumption is adding to my life, it is also making my mom highly upset and anxious. So much so that this whole issue makes her shake like a leaf. It is criminal that at this stage of my parent's lives, they are made to feel this way. There is a great deal weighing on me and I will spare you my inner dialogue, venom, and disgust I have for the reason why I am in this position. 

Wednesday, June 10, 2026

Wednesday, June 10, 2026

Tonight's picture was taken in June of 2002. Mattie was two months old and VERY ON! Here's the funny part about Mattie! I remember when he was a baby, I called the pediatrician in a panic. It sounded like Mattie was having a hard time breathing. He was making a very strange noise and he continued to do it repeatedly! The doctor was great on the phone and we walked through all the medical emergency signs to look for.... of which Mattie had none! After several minutes on the phone with the doctor, want to know what we concluded? Bottom line....Mattie was laughing! Even as a baby, he probably thought it was a riot seeing me running around in a panic..... so we learned quickly that Mattie had a major sense of humor. 

Quote of the day: Each problem that I solved became a rule, which served afterward to solve other problems. ~ Rene Descartes

For the last several years, I have been a part of a collaborative research team with two other non-profits and scientific researchers. Our mission is to implement the Psychosocial Standards of Care at hospitals around the country. There would be NO Standards of Care if Mattie Miracle did not existed! That may sound bold, but it is the reality! Sometimes it takes people who have suffered through the lived experience to evoke change in the healthcare system. In any case the Standards are designed to provide optimal psychological and social support to all children with cancer and their families throughout their cancer journey. Why were Standards needed? Because there is a standard of medical care for all forms of childhood cancer. Whether you are treated in California to New York, the medical protocols are the SAME. But the emotional and social support families have access to are ALL OVER THE MAP! They vary greatly by hospital, and it depends on what kind of private philanthropy a hospital has to financially support such supportive care services. Mattie Miracle wanted to see this CHANGED!

To me the Standards are Mattie's legacy, they are what was born out of his pain, suffering and death. However, I did not do this advocacy work alone. I did it with my other half for over a decade. Therefore, any time I reflect on the Standards, it is impossible not to also reflect on our long history together and the beauty of what our union created.... Mattie and the Standards of Care. 

Yesterday, I learned that one of our research proposals was accepted at a major international conference. The research team reached out to me and really wanted me to present at this conference with them! I can't tell you what a shot through the heart this was for me. Not because of their ask, that was lovely, but because my life has changed so dramatically. I do not have the freedom to go anywhere or do anything because of my caregiving, but that is only half of the trauma. The other half of the trauma is knowing that I carry the advocacy of the Standards alone, that my side kick and conference mate, is gone. I am not sure I will ever get over this intense pain, this loss, or the hollowness it leaves inside of me. 

Meanwhile for weeks, I have been working on Mattie Miracle's 17th Anniversary Video. I create one every June. To me it is a labor of love, which is getting harder and harder to do because of all I juggle behind the scenes. Nonetheless, here is it. When I wonder..... what have I been doing for the last 17 years (of which I never earned a $1)? The video is my answer! Since Mattie's death, I have devoted my time, skills, and talents to the cause!

Tuesday, June 9, 2026

Tuesday, June 9, 2026 -- Mattie died 849 weeks ago today.

Tonight's picture was taken in June of 2004. Mattie was two years old. I absolutely love this photo! Mattie and I were playing with his Mr. Potato Head toy. One of the accessories in the set was this yellow pair of glasses. Instead of Mattie putting them on Mr. Potato Head, he wore the glasses himself! Upside down no less! To me this was a priceless moment, which was why I snapped a photo!

Quote of the day: Heartbreak is something you learn to live with as opposed to learn to forget. ~ Kate Winslet

It was another early morning. My dad was scheduled to meet with a new physical therapist today. One of his usual therapists is on vacation and so this woman visiting today was supposed to cover for my dad's therapist over the next two weeks! In any case, this woman contacted me last night, requesting to come today. In addition, she gave me a two hour time frame, 10am to noon. Meaning, she would show up someone within that window of time. I did not like that notion, especially since none of my dad's other providers do this! My life is stressful enough, as I manage the daily routine of both of my parents, not knowing exactly when this therapist was coming today, practically pushed my apple cart right over the cliff. I even called the home care agency and complained about this policy! 

Any case, when this therapist showed up, we were like oil and water. She did have a session with my dad, but after today, I told her NOT to return. I will wait for my dad's therapist to come back from vacation in a week. I no longer have the patience or strength to be playing games with new attitudinal people. 

In addition to everything else, I also baked four dozen chocolate chip cookies for my dad's caregivers at his memory care center. They are celebrating caregiver appreciation week and the leadership of the center asked families to help celebrate the week with treats and cards. Naturally I could have bought cookies, a cake, and a card, but instead, I thought it would mean more if I baked cookies and made a handcrafted card! 

I got a call from my mortgage agent. He was calling me as I was awaiting for the physical therapist and while I had cookies in the oven. He asked if I could talk, and I literally said..... it depends on how long you need to talk to me for! Any case, today's call with just a check in, as he confirmed that they have all my documents that were requested and now I have to await for the second round of requests! Seriously that I have not jumped off the roof yet, is remarkable. In the midst of that I sat down to do my monthly house budget. When I reviewed all the bills I have to pay, what came to my mind was..... I must really be hated to have been left with all of this stress to manage on my own. I range from sadness to intense anger on any given day, and frankly I do not see a good future ahead. All I can see is constant stress, financial worries, and being alone.... as my family of three is now just ONE, a very lonely number!

Monday, June 8, 2026

Monday, June 8, 2026

Tonight's picture was taken in June of 2003. Mattie was a year old! He wasn't walking independently yet and this frustrated Mattie to no end. Yet he would scoot around the first floor, exploring, creating, and building. Mattie was busy working on something in the dining room, and he wasn't expecting me to be behind him taking a photo! Nonetheless, look at that adorable smile I received!

Quote of the day: Some people are going to leave, but that's not the end of your story. That's the end of their part in your story. ~ Faraaz Kazi

For two years, I have been communicating daily with a woman who lives in England. I met her through an on-line support group. I hated the support group, but it only took one session for this woman and I to instantly connect. So much so, that we have shared everyday together for the last two years. Some days, we are each other's life line, because it is hard to describe the nature of the pain, trauma, and heartbreak that we are experiencing. Our stories are different, but yet there are many overlaps. Last night, she went to a choir concert, and sent me a short video of one of the songs. When I heard the song, I immediately said to myself..... I know this! Because the song was performed in a big building, where the acoustics weren't the best, I couldn't hear the word. But I was determined to find the name of the song I was hearing. It came to me around 11pm. The song is..... and so it goes! There are many versions of this song, but the one that I absolutely love was performed by Billy Joel. I found the video and sent it to my friend. 

Though this song was written decades ago, it speaks so beautifully to heartbreak, pain, and being vulnerable. It turns out that Billy Joel wrote it after a break up. No surprise to me. If you have never heard this song, I attached it below. But the song ends with....

So I would choose to be with you

That's if the choice were mine to make

But you can make decisions too

And you can have this heart to break

And so it goes, and so it goes

And you're the only one who knows

It is hard to live life with a heart broken. I am hoping with time that this hollow, empty, and decimated feeling will ease, but I am now two years and 9 months into this journey, and the pain remains. 

Sunday, June 7, 2026

Sunday, June 7, 2026

Tonight's picture was taken in May of 2004. Mattie was two years old. That week we took Mattie to Boston to visit his grandparents. Along our journey we were headed to the Stone Zoo. But before going to the Zoo, we stopped to get Mattie some French fries. This was not an unusual sight..... I typically sat in the backseat with Mattie when he was a little fellow. But in this particular case he was very focused and eager to get his hands on the French fries. Of course no photo would be complete without Mattie's sippy cup of milk. We had a sippy cup with us regardless of the season, temperature, or time of day. It was Mattie's security blanket. 

Quote of the day: Take the time to enjoy the little things, for one day you may look back and realize they were the big things. ~ Robert Brault

My friend Heidi sent me this photo today! Ironically it was taken on June 7, 2016. This is Heidi's daughter Isabel, on his high school graduation day! I have known Isabel since she was in middle school. Now she has graduated from medical school and is doing her residency. Truly amazing to see a young girl develop into a young woman! It is remarkable what can happen in ten years. Isabel spent her middle and high school years doing a great deal of volunteer work for Mattie Miracle, and I would like to think my story has influenced her career decision. 

This photo was taken at Washington Harbor, in Washington, DC. You can see the famous Watergate buildings in the background. At one time, I lived only a few blocks away from this Harbor. Sunny and I walked in this area daily! I miss seeing the Potomac River, I miss the way my life used to be, and as tonight's quote points out.... take the time to enjoy the little things. Because from my perspective, nothing is guaranteed, nothing is stable, and the only thing that is for certain is constant change. 

This weekend, I heard two different stories of fraud perpetrated on two people that I know. What kind of world do we live in that we need to live life in fear and angst? Given what happened to one of my friends, I was afraid that the person I was communicating with by text was NOT actually my friend. So literally I responded.... prove that it is you! This is how nuts I have become! My friend responded with just three words. It was from those three words that I knew immediately it was indeed my friend! I truly give her credit that she selected words that were instant triggers that only she and I would know. I know when dealing with fraud and identity theft, it isn't always easy to think straight, but I was impressed with her clarity! 

I actually relate to the panic and horror both of these women faced this weekend. We live in a world in which we have to be forever vigilant, on top of things, and bordering on paranoid. Who can we actually trust? In my case, I have learned that even people I thought I was the most closest to, also can't be trusted. I will forever be effected by this reality.