Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.

As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter

The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

September 19, 2020

Saturday, September 19, 2020

Saturday, September 19, 2020

Tonight's picture was taken in September of 2005. As you can see Mattie (age 3) wanted to read books in our bed that night. Not an unusual request. Every night we read together, however, where we did it was up to Mattie. Mattie loved looking at the pictures in books and hearing stories told. He had many FAVORITE books, so much so that some books Peter and I could recite from heart! 

Quote of the day: Today's coronavirus update from Johns Hopkins.

  • number of people diagnosed with the virus: 6,755,171
  • number of people who died from the virus: 199,082

This afternoon, Peter and I registered to attend our friend's virtual art fundraising party. In fact, I met my friend Ilona this week to pick up all the necessary supplies to participate in this Zoom party. I met Ilona and her husband in 2013, soon after their only child, Chris, died from cancer. One thing I can say is no two parents grieve the same way, and as such, interventions and strategies to deal with grief also differ by person. 

If you asked me how I cope from day to day, I would say through writing the blog. Words matter to me and help me keep Mattie's memory alive, as well as give me an outlet to put my day, thoughts, and feelings somewhere. When I first wrote the blog, thousands of people read it daily. I could tell, as we have a number counter. However after Mattie died, the readership of the blog declined! My dad confronted me many times about wasting my time writing a blog that no one read. Of course I found both the decline in readers and my dad's comment hurtful. However, what I learned through TIME, was that the blog was for me. It was my outlet, my coping mechanism, and my way to talk about Mattie (as clearly I can't do this in my daily life). So while I write, my friend Ilona turns to art. She has taken many art classes and also became certified to teach intentional art classes. 

After we walked Sunny around the National Mall today, I came home and set up our dining room table for the virtual art party. I wanted to have everything I needed around us, so that I could concentrate on what Ilona was telling us through the computer. 
This was my view while creating! Mattie's sun was my backdrop. 
These are only some of Peter's creations. Peter is very artistic and unlike me, he knows how to draw and paint. 
Ilona instructed us on several different watercolor techniques today. The instruction was about 90 minutes long. She talked about each painting style, then we saw her demonstrate the style, and after which we tried out each style using our own materials. The last 30 minutes of class was the intentional part. Where we could cut out things we painted, write on them, and form them in patterns. 

Several of my art cards are Mattie or Mattie Miracle oriented!
When Mattie was in preschool, his name was "Mattie Moon." The school felt that children learned letters and the spelling of their names when matched with an object using the same first letter. Mattie Moon was so catchy, that many of us called him this for years to come.
Cut out watercolor paintings on top of an orange watercolor. 
I am typically not a blue person. In fact, you will never see me wear blue or green. I like and appreciate these colors, but they aren't my favorites. In any case, I moved passed my comfort level and included blue in my design. 
Naturally I couldn't do a creation without a butterfly included! Again the butterfly was cut out from a dot watercolor I did, and I placed it on this blue/purple spatter watercolor. 
Mattie LOVED turtles. In fact, his preschool director adopted a sea turtle (Roxanne) for him when he was diagnosed with cancer. Roxanne had a tracker on her, and we logged in often when in the hospital to follow her where-a-bouts!

September 18, 2020

Friday, September 18, 2020

Friday, September 18, 2020

Tonight's picture was taken in September of 2006. Mattie was four years old. That day we received a cat toy from Peter's parents. I am not sure who was more intrigued by the toy..... Mattie or Patches? Mattie got the toy out, assembled it, and then tried to engage Patches to play with him. Patches was a smart cat and frankly she had one eye on Mattie and another on the toy. In any case, Mattie learned a lot about caring for a pet and its needs from growing up with Patches. When Mattie had friends (who did not have cats of their own) come over for a playdate, he would show them how to pet Patches and behave around her. From that it was clear that Mattie loved Patches.  

Quote of the day: Today's coronavirus update from Johns Hopkins

  • number of people diagnosed with the virus: 6,705,114
  • number of people who died from the virus: 198,197

Do you ever feel like you are living in the movie, Groundhog Day? I know that Peter and I do. It is hard when each day is just like the day before it, and the only thing that seems to be evolving is the weather. Somehow it feels like we lost spring and summer. Lost it to a lockdown and unfortunately with the Fall season fast approaching, this doesn't mean things are improving. As we remain isolated. 

I had to pick up some preventable medications for Sunny today at the vet. I took Sunny with me in the car, because right after the pick up, I decided to give Sunny a two mile walk in the Palisades area of Washington, DC. As Sunny and I were walking around, all I could see in the yards were signs about wearing a mask and to practice social distancing. Certainly I get it, but what immediately came to my mind is..... how on earth can we ever return to normal? We have been taught to practically run the other way now when we see people, and avoid live interactions at all costs. We did not have time to grow into this new way of life, it was literally thrust upon us. For the health and safety of our communities, most of us complied and made a complete 180 to our regular way of life. But what happens if and when the virus is no longer a threat?

Will be go back to movie theaters, go out to dinner, attend sporting events, return to school, and participate in large gatherings? It's possible! Or is it possible that the psychosocial ramifications to COVID have transformed the way we conduct our lives? While being locked down, we have had to find other outlets and mechanisms to survive, communicate, work, and go to school. So I can't see  returning to the way things used to be happening any time soon! There will be consequences on our lives and things that we once did, we won't be doing any more. We have either learned to do without it, or things we used to do have been replaced by something else. 

For myself, I see a change from within. At one point in time, if you told me I had to relocate somewhere and leave Washington, DC, this would have upset me. Now, I feel less ties to anything. Most likely because of our daily existence which makes me feel disengaged, unconnected, and truly not a part of things around me. I realize everyone feels this way because of COVID, but I would say that after Mattie died, this was our baseline. It took great energy on my part to reinvest in the world, as in so many ways, I felt like the world no longer mattered if Mattie was not in it. Now that same empty feeling I worked through years ago is back. What's the answer? I don't have one, other than I take it one day at a time. A lesson I learned so well from Mattie's cancer journey.   

September 17, 2020

Thursday, September 17, 2020

Thursday, September 17, 2020

Tonight's picture was taken in September of 2006. Mattie was four years old. You maybe asking yourself, what was going on here? Well just like everything else involving Mattie, he needed to do things on his own time line. Potty training was one of those things. By age four, Mattie was in preschool, and he began noticing that his friends weren't wearing diapers or pull ups. Honestly the one time when peer pressure was actually a good thing. Mattie was inspired to learn to use the toilet and move away from pull ups. So this photo was taken after another successful potty run! Mattie had his tractor step stool (which he and Peter built from scratch and then painted it) in the process, and why not wear sunglasses for the occasion?!

Quote of the day: Today's coronavirus update from Johns Hopkins.

  • number of people diagnosed with the virus: 6,664,021
  • number of people who died from the virus: 197,447

Our day started with a video interview conducted by a researcher based at Children's Hospital of Philadelphia. We have met this researcher before and are very impressed with her understanding, expertise, and compassion for children with cancer and their families. This researcher and her team designed an evidence based psychosocial screening tool. In the process of their research, we have been interviewed about this tool, and apparently given our previous interview, we were invited back today. Today's interview was video taped, as what we were sharing is going to be integrated into a training webinar for clinicians.  

It is one thing to design a screening tool to assess for risk and resiliency across multiple domains like family structure, sibling stress, social support, family problems, etc, and another to get buy in from clinicians to use these evidence based tools with families. Clinicians need to hear from family members and advocates within the community about the importance of screening. As Mattie Miracle is very passionate about evidence based tools that can help families and clinicians communicate with each other, educate one another, and build rapport and a therapeutic alliance. After all rapport and trust are crucial factors in our health care providers. Especially those we are sharing our children with, and our family structure and dynamics. 

Given our experiences with Mattie, we can speak quite confidently about what was missing from Mattie's treatment and what needed to happen for us and therefore other families like ours. As I told the researcher today, it is possible she will get push back from clinicians in hospitals. They may say that using a screening tool is invasive for families, or better yet that no one has the time to administer such tools. I truly believe these barriers need to be confronted head on. Because if someone would have said to me on day one that childhood cancer is a medical and psychological disease, I would have paid attention. Instead, the only thing parents are bombarded with are the medical protocols. But that is short sided, because the medicine is actually a very small part of cancer treatment. It is the 24/7 issues, that arise from the medical treatment, that truly require support. 

Therefore, I encouraged clinicians to think about the screening tool as the first opportunity they can use to connect with a family. To educate families about the psychological component of cancer treatment, and to begin building the relationship between themselves and families. In addition, the information one obtains from screening is vital. I know it would have helped Mattie, if we had an initial screening. Mattie had sensory integration issues prior to diagnosis. He did not like loud noise or people too close to him. Knowing this information would have changed the way IVs and MRI's were initially given to him. Instead, because no base line information was taken from us, these procedures landed up traumatizing Mattie. Once traumatized by a procedure, it is very hard to reverse the fear for a child. Especially when dealing with prolonged hospitalizations. 

Needless to say, Peter and I both felt very good about today's interview. As we wore both our parent and Foundation hats. Any time we can speak about Mattie and share our experiences to help others, feels very empowering. 

After the interview, I jumped into the car and headed to a drive thru COVID testing site in Arlington, VA. Because I am getting a hysteroscopy next week in a hospital, I am required to get screened for COVID. 

My internist gave me a script for the test, which made the process much easier. I liked the drive thru option because I was not around people who could potentially have the virus, and I also could self-administer the test. 

The woman who worked with me, spoke to me through my closed car window. She was gruff and officious, but instructed me through every step of the process. This is a photo of the swab that goes into your nose. The micro brush at the end of the stick reminded me of a bottle brush. I have heard so many people complain about taking this test, so I wasn't sure what to expect. But it is quick and the worst it did was make my eyes tear. 
Later in the morning, we took Sunny to Roosevelt Island. It is our weekday retreat from this lock down reality. 
The beauty of the Island. 
I took this photo because the Island is very close to the city, and planes can fly overhead. But for the most part, it is an oasis from the city. 
Sunny loves it! I can't tell you how many times we walked this boardwalk with Mattie. Or better yet, how many times we walked this boardwalk after Mattie died, looking for a way to stabilize and reconnect with the world around us. Back then, it felt like our bodies were moving, but our hearts and minds were somewhere else. 
I found this tree with many burls on it. The funny thing about it is if you look at it closely, it almost seemed like many wooden faces looking back at me. 

September 16, 2020

Wednesday, September 16, 2020

Wednesday, September 16, 2020

Tonight's picture was taken in September of 2006. Mattie was visiting Peter's parents in Boston. Last night's photo and today's photo perplex me because I can't understand what was going on at that time which would have prevented me from traveling as a family. Which is why I asked Peter if he could fill in the gaps.  Like me, he can't remember either. I know in September of 2005, Peter took Mattie to Boston so I could study for my licensure exam. That explains that year, but not September 2006 and 2007! I typically remember everything so well as it relates to Mattie, but clearly not this time period. In any case, while in Boston, you can see that Mattie transformed a big cardboard box into a playhouse! Not unusual for Mattie! He LOVED boxes as they allowed his creativity to run wild. We had many cardboard box creations in our home over the years and Mattie wanted to save them. We held onto them for a while, and then I convinced Mattie that we would photograph them instead of saving them.

Quote of the day: Today's coronavirus update from Johns Hopkins

  • number of people diagnosed with the virus: 6,620,186
  • number of people who died from the virus: 196,465

Sunny got a new toy today! Sunny maybe 9 years old, but he has pep in his step and loves to play. Particularly with Peter. 

Today I had the opportunity to have a zoom call with an undergraduate student at the James Madison University. She reached out to me because of a class assignment. It is a non-profit class, in which she has to identify a non-profit within the community, interview them, and learn more about their mission and work. This student picked Mattie Miracle.

I am always curious to find out how students hear about us. So I asked if she knew someone with childhood cancer, to determine whether the connection is personal. In this particular case she knows no one with childhood cancer, yet she told me her mom is an elementary school teacher, and a child at her mom's school had died. Which I believe made this issue more real for the college student. 

Prior to the call, I shared various pieces of information about the Foundation with the student. I sent her links to articles about us and also forwarded a few videos. I figured all this tangible information would help her write up her report. It is interesting to hear about our Foundation and work through someone else's lens. Especially a person who isn't connected to our topical area or non-profit space. 

The student asked good questions and was genuinely interested in having a dialogue. What I found touching were her comments. She explained that she has done a lot of volunteer work at different non-profits, but none of them have the reach we have achieved. Meaning that we provide direct support to individual children and families with cancer, but we are also changing policy and the way health care is provided to ALL children with cancer. I thought that was a very astute observation. 

We talked about why we started the Foundation, the impact of COVID on the Foundation's operations, our mission, goals, how we assess results of the Foundation's work, sharing stories about patients we have helped, and the challenges and rewards of running a non-profit. All questions I can easily answer as I live and breath the Foundation. But she also asked me if in 2009 (when we started the Foundation) I could have predicted where the Foundation would be today? A thought provoking question! I think what has made the Foundation so successful is we use the lessons we learned from Mattie as our compass. Mattie showed us that childhood cancer is NOT just about the medicine. That psychosocial care had to be part of comprehensive care, and therefore Peter and I worked hard on figuring out how to achieve this goal. It wasn't by happenstance that we connected to the best and brightest psychosocial professionals in the field! These connections were intentional, and when you put committed and dedicated people together, there is no telling what can happen! The Psychosocial Standards of Care and their companion tool kit (Matrix and Guidelines) are the products of such collaboration. 

September 15, 2020

Tuesday, September 15, 2020

Tuesday, September 15, 2020 -- Mattie died 572 weeks ago today. 

Tonight's picture was taken in September of 2007. Mattie was 5 years old and with his cousins in Boston. I honestly have NO idea why Peter was in Boston at that time of year. I can't even recall where I was. I know Peter took Mattie to Boston in September of 2005, when I was home studying for my licensure exam. But this photo escapes me, so much so, that I have no context around it. Which is unusual for me, because I normally can describe every photo I have of Mattie. What I know for certain (and can see in the photo) was that Mattie wanted ONLY vanilla ice cream! Some things are a given!

Quote of the day: Today's coronavirus update from Johns Hopkins

  • number of people diagnosed with the virus: 6,601,337
  • number of people who died from the virus: 195,501

This photo was featured in the Washington Post. It shows a very unique SUN over the Washington Monument. In fact, the sun is muted! Why? Because of the brush fires on the West Coast. A neighbor told us this today, and I thought that couldn't be possible. But apparently the smoke from California and Oregon is in our upper atmosphere (20,000 feet up) thereby impacting the brilliance of our sunshine. 

As of late Monday, California’s fires have burned at least 3.2 million acres, an area equivalent to the size of Connecticut. This has sent unfathomable amounts of burned material into the atmosphere. My mom has lung sensitivities and today she had to see her doctor because she was coughing up blood. Thankfully she was given an x-ray and examined and is fine. But what isn't fine in the quality of the air she is breathing. 

Mid-morning, we took Sunny out for a 3 mile walk on Roosevelt Island. It was a beautiful fall day and Sunny's energy and stamina have returned. His knee surgery was a success, and with that, losing some weight, and cooler weather, he is a happy camper. Eager for his walks. 
Sunny was very excited by all the deer on the Island. He was following tracks and scents! Of course we never go anywhere without someone stopping to talk about the beauty of Sunny. He is a beauty and a my gentle giant. 
The deer were everywhere this morning! They ironically aren't intimidated by us, but Sunny is a different story. 
Cattails against the fall sky. 
Wild flowers were everywhere. Our walk was the perfect escape for today. 
Wild jasmine on the Island, which is intoxicating. 
The white heron were also enjoying the Island. 
Not to mention a great blue heron which flew in for a landing on the Island. The Island means a lot to us, and was there for us at different time points in our life. It was there when we were raising Mattie. It was our weekend escape, and a place Mattie loved to float and race his motorized toy boats. After Mattie died, the Island became a refuge to reconnect with nature as we desperately tried to work through the havoc in our minds and hearts. Now it remains our refuge during COVID, it continues to serve as a place of peace to re-connect with Mattie, and let's not forget a place for Sunny to explore and have an adventure in the woods. 

September 14, 2020

Monday, September 14, 2020

Monday, September 14, 2020

Tonight's picture was taken in September of 2007. It was Mattie's first day of kindergarten. I am not sure who was more nervous! It was a toss up. Mattie wanted to go back to his preschool, and the transition to an elementary school, was challenging. Yet Mattie got up early (which wasn't a problem for him), got into his school uniform, and complied with my request for a photo! I honestly thought I would have MANY years of first day school photos. I would never have guessed that this would be my first and only. 

Quote of the day: Today's coronavirus update from Johns Hopkins

  • number of people diagnosed with the virus: 6,545,948
  • number of people who died from the virus: 194,367

It is not unusual for me to receive email questions from the childhood cancer advocacy community and from families themselves. The questions always revolve around psychosocial concerns, treatment, and research. Today's question was about children with cancer who are dying. Specifically how and when should parents tell their children they are dying. It is an excellent question and believe it or not, even in 2020, there are mixed thoughts about this topic. Mixed in the sense that there are parents who feel this information should be kept from the child and then the opposite, parents who feel children should be told. 

Parents maybe all over the map on this question, but the psychosocial community no longer is! The trending thought is children should be told, in a developmentally appropriate manner. Frankly whether I read the research or not, I know first hand from Mattie (my 7 year old), that children are perceptive and they know OUTRIGHT that something is very wrong and they are sick enough to die. They may not understand the concept of death, like you or me, but they get the concept of a separation and the anxiety that can cause. In fact, Mattie told Peter and I that he was dying! I am not sure we processed that feeling, as our goal was always to fight for Mattie and keep him alive. So the notion of him dying, wasn't something we could face, even when our 7 year old asked us! 

I provided the person who emailed me with these four resources:

  1. When your child is sick by Joanna Breyer (particularly chapter 22):
  2. The Private Worlds of Dying Children by Myra Bluebond-Langer (landmark work from the 1970s)
  3. Dying Child’s Awareness of Death by John Spinetta 

Numbers 3 and 4 above, are actually landmark studies in the field addressing this very question! It was previously thought that children did not experience "death anxiety" given their facial expressions and mannerisms. However, this was proven to be short sighted and incorrect, as it was found that children as young as 6 years had a very real awareness of the seriousness of their illness. 

It was a very interesting question posed to me today and I was happy I could provide resources. As I strongly believe children, regardless of their age, are aware of what is happening to them and within them! Which is why top notch treatment teams LISTEN to their children patients and the parents who know them so well. 

The Dying Child's Awareness of Death: A review by John Spinetta

Two benchmark studies discussed within his article:


Waechter (1968, 1971) used a set of eight pictures, requesting stories about them from each of the 64 children in the study. She used four matched groups from the controversial 6-10 age range (fatally ill children, children with nonfatal chronic illnesses, children with brief illnesses, and normal, non-hospitalized children). Among the fatally ill children in her study, Waechter found a higher number of overtly expressed death themes and concerns than of mutilation or separation concerns and, compared with the other groups, a greater degree of concern with threat to and intrusion into their bodies and interference with normal body functioning. Waechter's findings pointed to the very strong possibility that children aged 6-10 with a fatal prognosis not only are aware that they are dying, but can express that awareness by actual use of words relating to death.


In the study (Spinetta et al., 1973), 25 children aged 6-10 with a diagnosis of leukemia were matched in age, sex, race, grade in school, seriousness of condition, and amount of medical intervention with 25 children with chronic (but nonfatal) illnesses, such as diabetes, asthma, congenital heart disease, and renal problems. The children were asked to tell stories about each of four pictures of hospital scenes and about each of four figurines (nurse, doctor, mother, and father) placed in a three dimensional replica of a hospital room. Each child was also given a brief anxiety questionnaire sorting out hospital anxiety from home anxiety, based on the Children's State-Trait Anxiety Inventory. The results offered strong support for the hypothesis that fatally ill children show significantly greater awareness of their hospital experience than chronically ill children. The leukemic children related significantly more stories that showed preoccupation with threat to and intrusion into their bodies and interference with their body functioning than did the chronically ill children, both in the stories relating to the pictures and the stories told about the placed figurines. The children with fatal illness also expressed more hospital-related and non-hospital-related anxiety than did the chronically ill children. If, as the parents of the 25 leukemic children maintained, their child did not know that his illness was fatal and if the chronically ill children generally received the same number and duration of hospital-related treatments, there should have been little or no difference between the scores of the fatally ill children and the scores of the chronically ill. Yet there was a significant difference in the level of anxiety that was present from the very first admission to the hospital. It seems that despite efforts to keep the child with a fatal illness from becoming aware of the prognosis, he somehow picks up a sense that his illness is very serious and very threatening. The study established the fact that the fatally ill child is aware that his is no ordinary illness.

September 13, 2020

Sunday, September 13, 2020

Sunday, September 13, 2020 

Tonight's picture was taken on September 24, 2008. By this point Mattie was in his second month of treatment, but before any of his limb salvaging surgeries occurred. That day, Mattie was invited back to his preschool to play with Alex, a preschool buddy and to see his preschool teachers. The photo shows Mattie and Alex in the sandbox. I can't tell you how many hours Mattie spent in that sandbox when he was in preschool. In fact, practically every day after school, when the weather was nice, Mattie requested to stay on the playground to play with friends. Which was exactly what we did! I am so glad in retrospect that I never rushed Mattie into the car after school to follow my schedule. When I was with Mattie, he was my priority and if he and his friends wanted to get together to play, then I always made that happen. 

Quote of the day: Today's coronavirus update from Johns Hopkins

  • number of people diagnosed with the virus: 6,512,451
  • number of people who died from the virus: 193,976

A friend of mine sent me the article below entitled, "Grief doesn't have five stages." In jest she asked if I wrote it! Clearly you can see I didn't, but apparently the thoughts and feelings expressed in the article reminded my friend of what I express often on the blog. Seeing articles like this confirms for me that I am absolutely right..... grief and loss are not something you get over. 

When we think of grieving and loss, our society tends to think of the process in stages. Perhaps in five stages (denial, anger, bargaining, depression, acceptance) according to psychiatrist Elisabeth Kübler-Ross. Kubler-Ross devised these five stages in the 1970's after speaking to terminally ill patients as a way of helping them deal with their own impending deaths. Unfortunately the Kübler-Ross model was taken out of context and instead became the well known framework for all responses to death. This popularization of the stages of grief concerned Kübler-Ross as she felt the steps were “not stops on some linear timeline in grief.” 

Make a long story short, it is now understood by those who live with grief and grief professionals that mourning and loss are NOT a linear process. In fact, it is rather a life long process and as the article says, the relationship with your deceased loved one continues, "loving them in absence, rather than presence." The bullet points below, I captured from the article, as they resonated with me. 

  • Grief is like an impenetrable force field around the person left behind, the person who used to be like you.
  • Back then, my head invaded by grief, I couldn’t find the words to explain the shifting size of it: unbearably huge one day, forcing endless crying and dwelling on the past; small and tucked away the next day, freeing me to just live for a little while.
  • Grief goes in circles. I think we are slowly coming to realize as a society, that it is okay to grieve your whole life.
  • The grieving process is complex, isolating and ongoing — requiring emotional energy to find meaning in the vast unfairness. This goes on under the skin, invisible to the outside world. It’s what you do just to continue living at the same basic level as everyone else. Certainly this involves feelings of denial, anger, and depression. Sometimes all at once, or not at all, and then again.
  • Mourning is so much more than an act of endurance. Really, grieving is the task of taking the love that was once shared between two people, and transforming it to fit inside one broken but still-beating heart.

However, the article stated..... “mourning can be one of the most enriching, vivid things you ever do, if you lean into it fully. There’s a feeling of joy that eventually arises.” I have no problem with the first part of the statement, but when you want to lump in feelings of joy from the process, you lose me. Certainly grief forces us to learn, cope, and grow. We don't have a choice if we wish to remain part of the land of the living. But I can't ever see myself saying this has brought me joy, nor do I foresee that happening in the future. Mainly because attaching joy to my loss process, would mean that I am okay with the fact that Mattie died in the first place. Which won't ever happen, I don't care how much time lapses since his death. I also would like to think that I am a self actualizing person and that there are much better and more enriching ways that I could have matured, grown, and developed in my life than having to experience the death of my only child. Yet it's not just this article that discusses this concept. Many of our psychosocial researchers and clinicians we interact with, also use this line of reasoning with me. I get what they are saying, but that doesn't mean it sits well with me. 

Grief doesn't have 5 stages:

September 12, 2020

Saturday, September 12, 2020

September 12, 2020

Tonight's picture was taken in September of 2008. That week we took Mattie to NYC to consult with a doctor at Memorial Sloan Kettering. That was a difficult visit, mainly because both the doctor and the institution were not a good match for us. In between hospital visits, we tried to give Mattie a NYC adventure. This photo was taken outside the Museum of Natural History. You can see that Mattie was NOT happy at all. 

Quote of the day: Today's coronavirus update from Johns Hopkins

  • number of people who were diagnosed with the virus: 6,476,460
  • number of people who died from the virus: 193,482

Given my migraine today, I won't be writing much. I think I did too much in terms of chores this week, seeing doctors, and having a six hour licensure board meeting yesterday. I have come back from Los Angeles very tired, and I have yet to get a break since returning home. 

September 11, 2020

Friday, September 11, 2020

Friday, September 11, 2020

Tonight's picture was taken in September of 2008. As you can see, Mattie was sitting in front of a laptop computer. This computer was given to Mattie by his technology teacher, Mary (of course when Mattie died, we gave the computer back to the school). Mary visited Mattie in the hospital on a weekly basis. This wasn't her assignment from the school. Rather she elected to do this on her own time. This should tell you a lot about Mary. Mattie knew Mary from his kindergarten year at the school. In fact, Mattie was very fond of Mary and he loved her class and her style of teaching. Once Mary found out about Mattie's cancer diagnosis, she took it upon herself to continue teaching Mattie and felt that he needed a computer so they could work more effectively together. Besides these visits being stimulating for Mattie, they also gave me an hour to leave the room and regroup. So Mary was actually helping Mattie and me. Yet Mary somehow understood that Mattie wasn't always in the mood for a lesson. He wasn't shy about that either and would outright tell her. Of course Mary could have said okay and then left, but she didn't. Instead, she would work with Mattie on whatever he wanted to do. Many times that meant that Mary got wrapped up into Mattie's play schemes. Mary was one of the many amazing people who Mattie introduced me to and I will always be grateful to Mary for her visits and treating Mattie with dignity. 

Quote of the day: Today's coronavirus update from Johns Hopkins

  • number of people diagnosed with the virus: 6,435,528
  • number of people who died from the virus: 192,792

On the 19th anniversary of 9/11, it is my hope that we all remember this day. As 3,000 people lost their lives, and countless others who have survived are left with long term health consequences. Whether we know someone who died on 9/11 or not, it is a day that should make us all pause and reflect as a Country. I admit I did not lose a family member on that day or a close friend. Though my high school librarian (who we all loved), died in one of the planes which hit world trade center. So I will always remember Mary Lynn Edwards Angell

I also associate 9/11 with my pregnancy. As on 9/11/2001, I was scheduled to have my first obstetrician visit. That never happened. Instead, pregnant with Mattie I was glued to the TV, like so many others in the USA and around the world. I can still recall the feeling of fear I had the concern I had for my baby and its (didn't know gender that early on) future. 

Given that we are all faced with the lockdowns associated with COVID, I have been following the controversy about whether or not to have gatherings and particularly whether the names of victims would be allowed to be read at Ground Zero in NYC. I completely understand the health threat and public safety, but I also feel that family, friends and first responders need this outlet to remember and share in their collective and lifelong grief. Which is why I was glad to see the coverage of Ground Zero today, because those who are LEFT BEHIND need to absolutely hear their family members' names. Yes that matters and yes it helps with coping with such a traumatic loss. 

While reading an ABC news article on 9/11, I learned about the "survivor tree." In October 2001, a severely damaged tree was discovered at Ground Zero, with snapped roots and burned and broken branches. The tree was removed from the rubble and placed in the care of the New York City Department of Parks and Recreation. After its recovery and rehabilitation, the tree was returned to the Memorial in 2010. New, smooth limbs extended from the gnarled stumps, creating a visible demarcation between the tree’s past and present. Today, the tree stands as a living reminder of resilience, survival, and rebirth.

Each year, the 9/11 Memorial gives seedlings from the Survivor Tree to three communities that have endured tragedy in recent years. The recipients this year of a sapling were three hospitals within the boroughs of NYC. One being the Montefiore health system, which lost 27 front line workers to the virus. 

Symbols and connecting to nature are crucial to survivors. It helps us feel a continued connection to our loved one, to invest back into our world as we watch this tree grow and thrive, and provides hope that we do have a future (though very different than how we thought or intended it to be). 

Tree that survived 9/11 serves as inspiration for past, future:

September 10, 2020

Thursday, September 10, 2020

Thursday, September 10, 2020

Tonight's picture was taken in September of 2008. Mattie was home between cancer treatments. As you can see, by that point in time, we already needed an IV pole and fluids. As cancer impacted Mattie's desire to drink liquids and even eat. So right from the start, we had to learn the art of giving an IV. Naturally, I was always scared that Mattie or us would step on his IV or tug at it. The issue was the IV was connected to a tube dangling out of Mattie's chest. However, over time, we all got used to having IV tubes around us and dangling from Mattie. We learned to live with them and Mattie had a healthy sense of cautiousness about these tubes. Notice our cat, Nurse Patches. Patches was very bright and in tune to family dynamics. Early on in Mattie's treatment we kept Patches at home, however, after those initial months, we boarded Patches at our vet. Because she needed medication administered for her kidneys and also needed more consistent care than we could provide. Patches lived at the vet for a year before she returned home. 

Quote of the day: Today's coronavirus update from Johns Hopkins.

  • number of people diagnosed with the virus: 6,377,540
  • number of people who died from the virus: 191,360

This afternoon, I went for a six month follow up eye exam. In the last exam I had in February, my IntraOcular Pressure (IOP) (the fluid pressure inside the eye) was high. This is a problem as such high pressure can damage the optic nerve. IOP numbers are apparently use to monitor for glaucoma. Glaucoma is a group of eye diseases that cause vision loss and blindness through damage to the optic nerve. 

I have never had eye issues before. I don't wear prescription glasses either. However, everything about today's visit was stressful. So much so that after an hour in that office, it triggered a migraine. I would say the staff and the doctor are insensitive. No wonder that this doctor is retiring. He has lost the art of balancing science and humanity. I found the doctor aloof and cold and was matter of fact with throwing one test after the other at me. I had about five different tests today and during the whole time, he did not explain what on earth he was looking for. He told me he would talk with me after the entire examination. He is lucky I did not flip out, as I could feel my anxiety and anger building. No regard for patients and the daunting nature of being in a dark room, with drops flying into your eyes, not to mention all sorts of lens and machines either near or in my eye. 

Any case, after the ordeal of tests, he started talking to me about angles and glaucoma. In all the years I have been going to this doctor, NOT once did he mention narrow angles. Narrow angles means that the angle between the outer edge of the iris and the cornea is narrower, or more closed, than normal. This can affect fluid flow and thus intraocular pressure. What I think it particularly curious is that I asked for a print out of all the results and his notes today. I want them for my record, as I also plan on finding a new eye doctor. In any case, in his notes, it mentioned that I have a history of cataracts and I am a glaucoma suspect. NEWS to me. I neither have a history of cataracts or currently have this problem. Nonetheless, he scared me enough about narrow angles, that I will definitely have another 6 month follow up, but go to a different ophthalmologist. 

In the normal eye, a fluid called the aqueous humor circulates continuously from behind the iris (the colored part of the eye) to the front, or anterior, chamber of the eye, delivering nourishment to the lens and the cells lining the cornea (the clear part of the eye). The fluid then drains out of the eye through the trabecular meshwork — the eye's filtration system — at the junction of the outer iris and the cornea.

In angle-closure glaucoma, the trabecular meshwork is obstructed by the iris, because the angle where the iris meets the cornea (sometimes referred to as the drainage angle) is narrower than normal. This slows or blocks the flow of aqueous humor out of the eye. Pressure from the aqueous humor behind the iris forces it against the trabecular meshwork.

So he started counseling me today on a procedure called Laser Iridotomy. It is a procedure to treat narrow angle glaucoma. Basically it is a procedure done in the office with a laser, in which a hole is made in the iris, so that fluid can more easily flow to the front and out of the eye. Needless to say, no one is touching me with a laser until I have more information and another qualified opinion. 

Certainly one wants to go to a competent doctor, but for me the personal fit has to be right. This office and doctor are a poor match for me, as they don't embrace the patient as part of the treatment team. If you are going to touch my eyes, I have every right to know what you are doing, talking about, and what the plan of care will entail. 

Meanwhile it was non-stop rain in Washington, DC today. More like torrential rain! 
The rain was so heavy, it looked like snowflakes to me. 

September 9, 2020

Wednesday, September 9, 2020

Wednesday, September 9, 2020

Tonight's picture was taken in September of 2008. That day, one of my friends came to visit us in the hospital. With her, she brought a block of clay, some tools, and goggles. Mattie had to excavate  through the clay to reveal plastic dinosaur bones. These bones then connected together, to form a 3-D dinosaur! Mattie worked on this block of clay for hours. It was the perfect activity for him. As it did not involve gross motor movement, only fine manipulation. Despite all of Mattie's surgeries, his fine motor movement was excellent. 

Quote of the day: Today's coronavirus update from Johns Hopkins

  • number of people diagnosed with the virus: 6,351,623
  • number of people who died from the virus: 190,478

Given that yesterday was the 11th anniversary of Mattie's death, we both feel a bit shell shocked today. It is hard to know how to prepare for these milestone moments, and most definitely I have learned over this past decade to have no expectations for others in our life. With time, people forget and it is natural. It is also natural to think that parents heal and the loss isn't as painful as time goes by. 

With that said, I am thankful to have friends who texted, emailed, left messages on Facebook, donated to the Foundation and reached out to us. It makes a huge difference on a hard day, which unfortunately doesn't last for only 24 hours. The day starts another year without Mattie and all that this signifies. I wanted to highlight two messages I received yesterday. One was a poem written by a colleague and long time friend. Nancy has a special way of capturing the sentiments and thoughts associated with an emotional day. The other message is from a child life professional I have had the opportunity of getting to know since 2018. Ironically I haven't worked closely with this professional, but apparently she has followed our story and is touched by Mattie's memory. The beauty of Mattie!

Remembering You

by Nancy Heller Moskowitz

Missed each and every day, Sept. 8th. is etched in our bodies

Achievements through the Foundation continue to remind everyone of your life

Today we visited your Oak Tree, proud and sturdy

The acorns and lady bugs were abundant, nature is your signature, your gift

I feel your presence as does Daddy, loving us back as we cherish you

Each year brings a new challenge, our son forever!

The second message came out of the blue, as I only periodically communicate with Jessica. Jessica wanted me to know about an art exhibit she attended in 2018. At the exhibit she participated by adding a wooden note to the display that reflected upon Mattie's life and his impact on her. Totally stunning for me to hear this, since we don't know each other well, nor has she ever met Mattie. However, I have had the opportunity to watch Jessica interacting with patients and she is very gifted. Not only capable, but she taught herself the Spanish language, and is very at ease working with children in English or Spanish. Her energy is always positive, consistent, and compassionate. The perfect combination for family members when stuck living inside a hospital. 

This is a photo of the art exhibit entitled, David Best's temple. The hand crafted temple was a glowing sanctuary, offering visitors a quiet place to reflect and pay tribute to lost loved ones. This site-specific installation covered the walls with intricately carved raw wood panels that led to an ornate altar. Wooden placards were provided for visitors to write a personal message and leave within the installation. I am so sorry I missed this exhibit, but was thrilled to hear Jessica went, and not only went but placed a wooden card in memory of Mattie at the exhibit. 

A short video about the exhibit:

Here is a photo of the note Jessica inserted into the display back in 2018. I was deeply moved by her entire message to me, but this sentence stays with me........
 "what I didn’t realize is how much I could think of or care about a child who I never even got to meet." 

I did not know until now that Jessica wrote this wooden note, or that Mattie's life has touched her in this way. So this was a very, very special gift to receive on the 11th anniversary of Mattie's death. The gifts that are unsolicited are always the best. But what Jessica's email made me see, is that I must be doing a good job at keeping Mattie's life and memory alive. Otherwise, how would anyone, who hasn't met him, know about his amazing life and legacy. 

September 8, 2020

Tuesday, September 8, 2020

Tuesday, September 8, 2020 -- Mattie died 571 weeks ago today. 

Today is the 11th anniversary of Mattie's death.

Tonight's picture was taken in April of 2002. He was only days old. Ironically I feel that when Mattie was born, he looked more like Peter. This quickly changed by the time Mattie became a toddler. At that point there was absolutely NO mistaking who his mom was. 

Quote of the day: Today's coronavirus update from Johns Hopkins

  • number of people diagnosed with the virus: 6,321,950
  • number of people who died from the virus: 189,538

We visited Mattie's memorial tree today at school! This white swamp oak looks strong, steady, and beautiful. This is memorial tree #4, as the first three had issues. The School's arborist once told me that..... Mattie wanted an oak and was holding out until he got one. 

Mattie loved oak trees. He collected acorns every year and gave them to SPECIAL people in his life. So I know Mattie would have been happy seeing all the acorns on his tree today. Not to mention lady bugs. The tree was filled with them. I view this as a sign from Mattie to me. 

The acorns with their cute caps! Ladybugs all over the tree!

We hung many butterfly ornaments today and changed all the ribbons around each of the trees in our memorial Mattie grove.  While on campus, we chatted with Mattie's school counselor and all the grounds crew who have gotten to know us over the years! They LOOK OUT for Mattie's tree! We are grateful to have this oak tree to turn to every September 8th.

It is hard to believe that today marks the 11th anniversary of Mattie's death. One may think..... wow that is a long time ago, and therefore we must have "gotten over" this loss. Those of you who know me, know I despite certain words like "moving on," "getting over," "the new normal," "every thing happens for a reason," and "he's in a better place." In fact, I strongly dislike most platitudes.

The only thing time does for bereaved parents is it teaches us how to survive the impossible. As grief and loss will always be with us, but how we manage and cope with this life-long journey, our thoughts and feelings, and sometimes the insensitive things people say to us are all we have control over. 

If Mattie were alive today, he would be going to college. I realize going to college now looks different because of the Coronavirus. However, I would take different over, a non-existent child any day. 

Eleven years after Mattie's death, and Peter and I still flounder over how to spend this day, and of course with each year that passes, it takes more energy and concentration to remember the nuances of our son. Something I don't wish upon any parent.  

Below is a message I wrote and posted at Mattie's celebration of life service in 2009. The message discusses the day Mattie was born, a story he loved to hear. He particularly loved hearing this story during challenging and stressful times, such as on August 5th, when we learned Mattie's cancer spread throughout his body, making his prognosis terminal. 

Who was Mattie? Mattie was a force. He was bold, humorous, bright, strong willed, loved animals, was king of the Legos, was fascinated by anything with wheels, was our "little engineer" (at the age of two, he could disassemble and re-assemble his hotwheel cars), and as Peter often said, he was a "mama lover." He is dearly missed and forever loved. He leaves a hole in our hearts and our lives that can never be filled. 

For all our family, friends, and Mattie Miracle supporters out there..... THANK YOU for keeping Mattie's memory alive. 


My Dearest Mattie,

It is said that parents love their children right from the moment they are born. However, in your case, our love for you began as soon as we learned we were going to have a baby. In fact, right after seeing your sonogram picture, we felt like proud parents. We posted those pictures everywhere. We shared these pictures with practically anyone who would listen or showed interest, and each September when I taught prenatal development in my undergraduate human development class, out would come your sonogram pictures to illustrate my points. Even my students got a sneak peek at our baby, a baby who would have a profound and meaningful impact on not just his parents but also every community he touched. Daddy and I did not only love you, we FELL IN LOVE with you, and that love grew stronger with each day. Your energy, spirit, love for life, intellectual challenges, sense of humor, and loyalty to your friends and family were only some of the wonderful traits we always admired in you.

This video is a tribute to you and your wonderful, yet short life. It seems fitting as we celebrate you, and say good-bye to your physical presence that I share the story about how you entered the world. The story of your birth had to be one of your most favorite stories to hear, and I found during times when you were reflective, overly tired, or in need of hugs and tenderness, the request for this story arose. In fact, I remember on August 5th, the day we found out that your cancer metastasized everywhere, you and I were sitting in the hospital’s rose garden, and you requested the story. It was almost as if you knew this was going to be a bad day, so in essence we might as well brace ourselves, cuddle, and prepare for this together.

Here is the story I always shared with you. A story Daddy and I will never forget. On April 2, 2002, at 11pm, I decided to head to bed. I was anxiously awaiting your birth, and as your due date approached, I couldn’t help but wonder, when will “the baby” be coming? I was restless and uncomfortable, so while in bed, I began to watch television. I was having trouble concentrating on what I was hearing, mainly because you were kicking up a storm inside of me. At which point, the kicking became so intense, that I literally felt something pop. You clearly wanted OUT, and you were going to kick your way into the world on your terms. Naturally after feeling this pop, I looked down at my tummy, and when I jumped out of bed, I realized my water had broken. This only happens to 25% of moms, and in retrospect, I should have guessed that this was just the beginning of how different our lives were going to be together. I immediately called the doctor and told her what happened. She asked if I was in pain, which I wasn’t, and she instead told me to get a good night’s rest, because my baby was going to be born the following day. Well I can assure you after hearing this news, sleeping was the farthest thing from our minds.

So on April 3, 2002, Daddy and I headed to the hospital and we were admitted to the maternity unit at 8am. The labor process began, but it was a VERY slow process for me, and at times as you moved inside my tummy, Daddy could see your head pushing against my backbone. Needless to say Dr. Mike, the anesthesiologist, became my favorite doctor that day. The hours kept rolling by, and still there was NO sign of our baby! I was getting weaker, I developed an 102 fever, and by 11pm I really had no energy to give birth to you. In addition, to how I was feeling, your oxygen supply was getting cut off, and your chin was positioned in such a way that would make the birthing process almost impossible. So it was at that point that the doctor recommended an emergency c-section. Things began to happen very quickly around me. I was signing paperwork for surgery and Daddy was being transformed by putting on a bunny suit so he could enter the operating room.

I had never been in an operating room before in my life, but I really wasn’t concerned at that point about myself. I was solely focused upon you. I was wide-awake for the c-section, but unable to see the process, which as you know, was probably a good thing. Daddy on the other hand found the whole thing very exciting, and began to videotape and take pictures of the surgery. Literally a team of people surrounded me and I will never forget Dr. Mike, the anesthesiologist who sat by my side, and talked with me and did whatever he could to keep me pain free.

When you have a c-section, your arms are strapped to the operating table, so I couldn’t move, and directly over my head was what appeared to be a rope with a clamp that was holding open my abdominal cavity. Normally by this point I would have passed out, but when it came to you, I developed strength I never knew I had. As the doctor began cutting, and finally got to you, the first thing she said was, “what is this?” That is NOT what you typically hope to hear when having a c-section. The doctor let me know that I had a grapefruit sized tumor on my bladder, and my immediate thought was, did this affect the baby? The next thing I knew, I felt her tugging, and I heard the loudest cry ever. Now here is the part of the story that I know was always your FAVORITE! I would always try to replicate the sound I heard coming from you that day, a sound that will always remain in a parent’s ear. It was a very large WAAHHH! WAAHHH! At which point the doctor told us two things: first, that you were one of the most beautiful babies she had ever seen, and second, that you had quite a set of lungs on you! I concurred with both statements.

The doctor then brought you over to me, and she felt that I needed to be the first person to touch you. So despite my arms strapped to the table, my right hand miraculously reached out and grabbed your tiny, soft, and cute foot. It was a moment I will always cherish, a moment in which I will never forget, and a moment I am so happy you too enjoyed hearing about. Each time I retold the story I felt as if it further bonded us together, and I always enjoyed hearing your comments, thoughts, and reactions to your story.

Seeing you made Daddy very happy! Though he was worried about me, since after the c-section, I had to have bladder surgery to remove the tumor, we both agreed that Daddy should stay with you and accompany you to the nursery. It is there that Daddy got to see you cleaned up, he learned that you weighed 6 pounds and 13 ounces, and that you had high Apgar scores of 8 and 9. Within an instant, Daddy became one of your fiercest protectors, and he cared for you for five days straight while we were in the hospital together. In fact, Daddy is the first person who changed your diaper, and though those were five very challenging days in the hospital, they were days that helped us form our strong family ties. Ties that were imperative and that we relied on for seven years of your life!

Your presence is so greatly missed. Nothing seems the same, is the same, looks, feels, or tastes the same without you in our lives. May you always know that Mommy and Daddy love you, cherish you, and that feeling will remain with us forever and always. Good-bye my Mooshi Moo angel and goodbye Daddy’s best buddy. With love from Una Moon and Daddy!