A Remembrance Video of Mattie

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to me that you take the time to write and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful and help support me through very challenging times. I am 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 have stopped writing on September 9, 2010. However, like my journey with grief there is so much that 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 me, and most importantly thank you for keeping Mattie's memory alive.


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



January 28, 2020

Tuesday, January 28, 2020

Tuesday, January 28, 2020 -- Mattie died 539 weeks ago today.

Tonight's picture was taken on January 23, 2009. It was about two months after Mattie's second major limb salvaging surgery. A surgery that transformed Mattie's life, because in that moment he became not only a child with cancer but one who also had a physical disability. Next to Mattie was Anna, Mattie's physical therapist. Anna worked very hard at trying to get Mattie up and walking. That particular day Mattie took a few steps with this posterior walker. As you can see Anna was thrilled! However, after all of Mattie's surgeries, he never walked independently again.  


Quote of the day: With research and case examples, the continuing bonds theory fundamentally changed the way we conceptualize grief (and when I say ‘we’, I mean ‘grief professionals’.  I suspect this has been intuitive to grievers for thousands of years!) ~ What's your grief


My friend Denise sent me an article entitled, Continuing Bonds: Shifting the Grief Paradigm (https://whatsyourgrief.com/continuing-bonds-shifting-the-grief-paradigm/). The title alone is catchy isn't it!? So naturally I continued reading the article. The article itself is short but it does a wonderful job at introducing its reader to a whole new way of thinking about grief. I love tonight's quote from the article, because it highlights the chasm between researchers/clinicians and those of us who are grieving. Researchers/clinicians have espoused for years the importance of accepting the loss or finding a new way of living. Whereas those of us who walk with grief each day want to know WHAT IS THERE TO ACCEPT? Being asked to accept the impossible is hard to swallow, so instead intuitively over time we find ways to move forward but at the same time maintain a bond with the one who died. 

Apparently continued bonds are at the core of grief counseling today. The grief book, Continuing Bonds: New Understandings of Grief (Death Education, Aging and Health Care), was published in 1996. The authors, Klass, Silverman, and Nickman, question the traditional models of grief. The book suggests that these linear models, which end in a detachment from the person we have lost, were denying a reality of how people grieve. Instead, these authors suggested a new paradigm, in which healthy grief did not resolve by detaching from a loved one, but rather in creating a new relationship with the deceased. For me, this blog and my work with the Mattie Miracle Cancer Foundation are my continued bonds!
Here is the 30 second summary about continued bonds: under this model, when your loved one dies grief isn’t about working through a linear process that ends with ‘acceptance’ or a ‘new life,’ where you have moved on or compartmentalized your loved one’s memory.  Rather, when a loved one dies you slowly find ways to adjust and redefine your relationship with that person, allowing for a continued bond with that person that will endure, in different ways and to varying degrees, throughout your life. This relationship is not unhealthy, nor does it mean you are not grieving in a normal way.  Instead, the continuing bonds theory suggests that this is not only normal and healthy, but that an important part of grief is continuing ties to loved ones in this way. Rather than assuming detachment as a normal grief response, continuing bonds considers natural human attachment even in death.
The bold text above I think is particularly poignant. Especially since it is COMPLETELY counter to the way society thinks about grief. All I know is that society's philosophy on grief did not resonate with me, and I hated when people expected me to return to NORMAL after the first year after Mattie's death. Unfortunately it doesn't work that way...... there are NO NEAT fixes, and expecting this to happen only sets up a bereaved person for failure. 

It seems to me that people get edgy around those of us who have experienced a tragic loss. Yet it is my hope that the continued bond concept catches on, because then friends and family will know that the way they can truly help us is by keeping these continued bonds to our loved one alive and well. 

January 27, 2020

Monday, January 27, 2020

Monday, January 27, 2020


Tonight's picture was taken on January 12, 2009. Mattie was invited to his friend Abbie's birthday party. Honestly parties were difficult for us, as I was on hyper alert about Mattie's mood, how others would treat him, and of course given his physical limitations, I worried about his safety. Sometimes Mattie could keep it together while out in public, but then when we got home, Mattie would lash out at us. It was overwhelming and heartbreaking at the same time. 






Quote of the day: There is no greater sorrow than to recall in misery the time when we were happy. ~ Dante Alighieri


I think Dante's quote is quite poignant. Of course I would say that life before Mattie was diagnosed with cancer were happy times. Sure we may have had the typical ups and downs of everyday life, but nothing as traumatic as making 24/7 life and death decisions about your child. My life has two parts to it, pre-cancer and post-cancer. Mattie's diagnosis and death have transformed our lives, how we view the world, and our future. 

I was talking today to someone who has had multiple miscarriages. These multiple losses are not something this couple had factored into their future. As this young couple started out very much in love and with their life ahead of them. Yet with each loss they experienced, it transformed their relationship and how they felt about one another. So much so that the couple is now separating. 

Can I understand this? Absolutely! I think Peter and I could write a chapter on loss and how it impacts a relationship. In fact, Peter mentioned this exact topic at the Social Security workshop that we attended last week, and you could see people in the audience were uneasy and unsure of how to react to this raw but true information. 

The fact is our society views the natural progression of a relationship in a certain way, with no regard for the unexpected. Many assume that a woman and man in love will get married, have a house, have children and the family will grow and mature together. What happens when this doesn't happen? It isn't only sad but it can tear families apart and truly the world around us has absolutely no idea how to help. Some don't even want to, as you serve as a constant reminder of pain. After Mattie died, I remember many people I knew who would walk the other way if they saw me at a store fore example. They avoided me at all costs as I am sure they did not know how to deal with me, perhaps did not want me to feel worse, or frankly they didn't want to face the reality of my pain. As my reality could be ANYONE's really, especially when you think that 46 children a day are diagnosed with cancer in the USA. 

What interests me about today's conversation was that we had similar ways of thinking. We both see the world in terms of a trauma. Meaning, that when I see people talking about marriage and about eventually starting a family, I feel no joy in hearing this, nor do I feel happy for the couple. Because in my mind, the question that pops into my mind is..... what makes you think you will have healthy children? Of course the majority of the world has typically developing children, yet for those of us who have a child with an illness or disability, we know that life isn't always fair and the natural progression of things is NOT a given. Clearly not a conversation I can have with everyone, yet when I find someone who speaks my own "emotional" language, it makes me see that I am  not alone!

January 26, 2020

Sunday, January 26, 2020

Sunday, January 26, 2020

This photo was taken on January 13, 2009. We took Mattie on a boat tour around New York City. A kind passenger snapped this photo of us. Due note that we were on the Hudson River two days before the US Airways 
Flight 1549 crash (the plane after takeoff from New York City's LaGuardia Airport struck a flock of Canada geese and consequently lost all engine power). Two days after this photo was taken, many boats like the one we were on went to the crash site to pick up passengers in the water. 


Quote of the day: Many ideas grow better when transplanted into another mind than the one where they sprang up. ~ Oliver Wendell Holmes


I am still dealing with a swollen ankle, but as long as I can walk, I do! We took Sunny for a visit around Roosevelt Island today. That is two days in a row, and he loves it. He meets other dogs there, we talk to other owners, and he loves checking out the trees, bushes, and the boardwalk. Then Peter and I put our minds together and started working on some promotional material that our board member requested. Clearly Peter or I could have done this alone, but like Holmes' quote, I do think that when we dialogue and share ideas, what we generate is more meaningful and impactful. 

Meanwhile, check this out! This is Pastries by Randolph in Arlington, VA. My friend Carolyn gave me cupcakes from this bakery last year. I asked her where this place was located and today I had the opportunity to visit it for the first time. It is like walking into a candy store. So many wonderful products for the eyes to see. I haven't seen a bakery like the caliber of this one in our area in a long time. I was on a mission to buy cupcakes for a friend of mine and I was totally impressed with the professionalism and efficiency of the women working behind the counter. 

January 25, 2020

Saturday, January 25, 2020

Saturday, January 25, 2020

Tonight's picture was taken 16 years ago today. Mattie was 18 months old and as you can see he was busy playing with boxes. Which always made me laugh, as Mattie had all sorts of toys, but if boxes were around, he naturally gravitated to them. They served as the perfect building material for him!


Quote of the day: Dreaming permits each and every one of us to be quietly and safely insane every night of our lives. ~ William Dement


Why am I showing you a photo of the Vatican? Well I woke up this morning from a very disturbing dream. In fact my alarm went off to wake me up and because I was too tired, I reset it. Ironically when I fell back asleep, I picked up where I left off in my dream. My dream took place in Italy, visiting a big cathedral. Not unlike the Vatican. 

However, in my dream, I was traveling with Peter and Mattie. I could see that Mattie was healthy and wasn't dealing with cancer. Keep in mind that in real life, Mattie never visited Italy. So this is not a memory that I was building upon. 

The dream had various scenes. Almost like watching a play in a way. In the first scene, all three of us were touring a big church in Italy. We were learning about the church's history and all the different parts that comprised the religious complex. Along the tour, the guide pointed out the "funeral area." An area where they stage a body before a service is performed for the bereaved family. My brain totally made this up because I have NEVER seen such a funeral area in a church. Any case that was scene one. 

In scene two, Peter and I are walking around the church, but Mattie isn't with us. Instead, church personnel approach our tour group and tell us that many of the children we came with on tour are now dead. That they are in the "funeral area" and they advised us to go back to our hotels and get a change of clothing for our children, because these will be the clothes they will be buried in. The church implored all of us to come visit our child's body immediately in the funeral area.

In scene three, I am feeling confused because in my mind Mattie is safe and couldn't have possibly died. So I disregard the church personnel. I neither get clothes for Mattie nor visit the funeral area. At this point, I don't remember what happens. I have no memory of how we got from Italy back home to the USA. I also have no idea if I realized Mattie wasn't with us!

However, scene four, I am home. We are sitting on our couch and apparently watching a documentary on the cathedral we visited in Italy. We are both fascinated by the show because we were recounting how we just visited that space months before. The problem is in the documentary, they began talking about the "funeral area." To illustrate what the area looked like and how it is used, they show us bodies in the area waiting to be processed. When I see the bodies on TV, I realize that one of the bodies happens to be MATTIE. Unlike all the other bodies which were clearly dead, Mattie was sitting in the funeral area and he was moving around and talking. He was NOT dead, and the documentary was able to prove this to me.  

It is within scene five, that I realize I should have listened to the church personnel. I should have checked the funeral area and if I had Mattie would still be alive today. Because I did not check, the church buried Mattie. I have no idea, buried alive or whether Mattie was killed. My brain did not provide more details than this, which I suppose is fortunate, given the disturbing nature of this dream. 

I am sure someone could have a field day with this dream. I do not think it is coincidental that I should have this dream now given that I testified this week before the National Academies of Sciences on the impairments Mattie had from cancer treatment, or the submission on palliative care that I wrote yesterday. To speak and write about these topics causes me to reflect back on very difficult times, and as such these emotions are reflected in my dreams. Loss of control and the inability to prevent Mattie's death are at the top of the list. 


Meanwhile on Wednesday morning, I woke up with a sprained ankle. It has swelled to the size of a golf ball. I have no recollection how I rolled my ankle to cause this issue. Yet here I am affected. I fortunately can weight bear and walk, but I am limiting the extent of what I do. 

This afternoon, we took Sunny for a walk on Roosevelt Island. Sunny was the one who spotted two white tailed deer. 
The deer are acclimated to visitors on the Island. For the most part, they don't move, but instead watch you as you watch them. 
Can you see two deer? One is popping up her head on the right (near the log) and the other one is in the left foreground, quite visible. 

January 24, 2020

Friday, January 24, 2020

Friday, January 24, 2020

Tonight's picture was taken in January of 2006. Mattie was three years old and was sitting on this cute wooden rocking duck. It turns out this duck was Peter's childhood toy. Mattie liked the notion that he was playing with something that once belonged to his dad. So he was smiling with pride! 


Quote of the day: Some people mistakenly believe that palliative care is only for patients who are incurably ill. The goal of palliative care is to provide relief from symptoms, and stress of a serious illness-whatever the diagnosis. ~ Raymond Young


About two weeks ago, a psychologist from Children's National Medical Center (Washington, DC) reached out to me. I happen to know her as she is one of the authors of the Psychosocial Standards of Care. I can't tell you how many wonderful professionals we have met over the years, as the Standards were being developed. This particular psychologist is competent, lovely and compassionate. It turns out she has been asked to write a palliative care chapter for a pediatric cancer textbook. She was hoping to include our story within her chapter and she asked me to write a 500 word submission that  highlights Mattie's diagnosis, his experiences, and whether we had access to palliative care. In addition, I was asked to make a statement about what I believe quality palliative care looks like, who is a palliative care provider and whether this care should be offered to both children and families. 

This was actually a difficult assignment for me because of the word count. It is hard to write about Mattie and our experiences and be succinct. Not my strong suit! That said, you maybe asking yourself, what is palliative care?  

Palliative care is focused on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.

In a nutshell, Mattie wasn't offered palliative care. I truly believe many hospitals and families still equate palliative care with end of life care. Therefore because the word is threatening, it isn't used at all. Which is unfortunate, because anyone with an illness should have access to palliative care right from the beginning of treatment. Palliative care helps manage pain, other symptoms and provides services to enhance quality of life. Certainly all patients want this type of support regardless of their medical prognosis. 

I found this slide to show you the difference between palliative and end of life care. Mattie's treatment was intense and produced many physical and psychosocial impairments. I think if we had a palliative care team assigned to us during the beginning of our journey, it is possible that Mattie's pain, social isolation, and fear would have been better managed. 

Here is what palliative care can do! When writing my 500 word submission, I spoke about the importance of including palliative care in comprehensive cancer care. I specifically discussed the role of psychosocial providers and how they are a crucial part of the care team. Since childhood cancer is a family disease, I elaborated on the fact that the treatment team is responsible for the well-being of both the child and the family.


Here are the benefits of palliative care according to the International Children's Palliative Care Network: 

1. A child's quality of life is vastly improved when the symptoms of their illness are well managed. This may require opioids. 

2. Children's palliative care is specifically tailored to the unique physical, psychosocial, cognitive, and spiritual development of each child. 

3. Age appropriate, sensitive but honest communication with children is a cornerstone of children's palliative care. 

4. Palliative care is best when provided by a coordinated and multi-professional team, working together for the best interests of the child and family. 

January 23, 2020

Thursday, January 23, 2020

Thursday, January 23, 2020

Tonight's picture was taken in January of 2006. That day I brought two gingerbread houses to Mattie's preschool. I baked and assembled them myself. I also brought in royal icing and lots of different candies for the children to decorate the houses. It was such a fun activity that literally all four classrooms at the school got a chance to rotate in and decorate the houses. At the end of the day, Mattie got to take both houses home. You can see Mattie posing with the finished products! Mind you prior to this activity, I had NEVER baked a gingerbread house before. Mattie introduced me to many FIRSTS.



Quote of the day: A man who carries a cat by the tail learns something he can learn in no other way. ~ Mark Twain


Tonight's quote makes me laugh! I laugh and yet there is SO MUCH truth to Twain's quote. Anyone who has a cat as a pet, realizes what will happen to you if you pick your cat up by the tail. If you don't know this, then after trying it, I bet you will never forget the outcome! By analogy, I would say after experiencing Mattie's cancer first hand, I have learned lessons that others may not intuitively know. This brings me to yesterday's conference that we attended. 

We had the opportunity to hear a presentation by Dr. Kristina Hardy at  Children's National Medical Center (Washington, DC). The presentation was entitled, "Neuropsychological sequelae following diagnosis and treatment of pediatric cancer." It is pretty much understood in the cancer world, that treatments that involve radiation to the brain will produce cognitive impairments (such as lower attention span, short and long term memory issues, and executive functioning problems - organizational skills, time management, and planning). 

However, what we learned yesterday is that researchers are realizing that ALL children with cancer maybe facing these same cognitive impairments, even if their central nervous system wasn't exposed to radiation. Why? Because chemotherapy in general causes neuroinflammation and cardiopulmonary issues, which can prevent oxygen and other nutrients effectively getting to a child's developing brain. 

Given our experiences with Mattie's horrific treatment, I wouldn't be surprised if he faced these cognitive issues post-treatment. Of course we will never know, and in Mattie's case, his level of trauma and anxiety would also need to be taken into account, because to me trauma would have a direct impact on his ability to focus and his working memory. 


What also intrigued me is the younger a child is at diagnosis the more significant cognitive impairment may occur if the child received cranial radiation. Compare a child who is 12 versus 5 at diagnosis. By age 12, several skills have already been learned. The child had a longer time in school and has experienced social interactions. For children who have had cranial radiation, research indicates a 10 point decline in IQ for a child who is 5 years old at diagnosis, compared to a 12 year old (this figure illustrates what I am talking about). We also learned that there is NO known treatment to improve declines in IQ scores. So clearly the younger a child is diagnosed, the more significant the consequences. 


I took photos of Dr. Hardy's slides. This slide illustrates that children with central nervous system tumors and Acute Lymphoblastic Leukemia (ALL) typically have cognitive impacts.  
This slide caught our attention, because it mentions that cognitive impairment may occur in people with solid tumors (in other words, treatment that does not involve cranial radiation). 
This slide lists other forms of childhood cancer. Cancers that do not require cranial radiation. Yet in these cases the treatment impacts hearing and the heart which can also produce cognitive deficits. With the heart, nutrients aren't getting to the brain, and with hearing.... if you have trouble hearing what is being said to you, this will directly lead to cognitive challenges and difficulties. 

Look at this graph. The top arrow points to the expected cognitive development of a child. The bottom arrow applies to the same child, except it shows the decline in cognitive development after being diagnosed with cancer. I think this whole notion is frightening, because it shows the long term ramifications of cancer on a child. In essence the treatment permanently alters a child's potential in life. This has huge consequences for the entire family. Which is why there really is NO cure for childhood cancer. How can there be, when children are left with such devastating consequences. They may have no evidence of disease as the medicine beat back cancer, but it comes at a high price to one's overall long term quality of life. 

January 22, 2020

Wednesday, January 22, 2020

Wednesday, January 22, 2020

Tonight's picture was taken in January of 2005. Mattie was two and half years old and was invited to a birthday party. As you can see his trusty sippy cup was in tow. We never went any where without a sippy cup. Mainly because Mattie wasn't interested in water or juice, but milk. My joke was he was going to have the strongest bones around. I would never crossed my mind that Mattie could be diagnosed with bone cancer. Also note that this photo shows that Mattie ate some of the cake. Another rarity as Mattie wasn't into sweets. Yet if this had been a chocolate cake, the entire slice of cake would have been remaining on his plate. 




Quote of the day: The world as we have created it is a process of our thinking. It cannot be changed without changing our thinking. ~ Albert Einstein

In 2010, Mattie Miracle received a case of Pork Barrel BBQ sauce. Frankly when we received this big box, I wasn't sure what to do with it. I knew it was donated to us so I decided to feature it at the Foundation's raffle which was held at our FIRST WALK in May of 2010. After the event was over, I wrote a thank you note to the donor of the BBQ sauce. 

The donor was Brett Thompson, who was the co-founder of the company (https://www.dailysignal.com/2015/06/21/sick-of-political-pork-two-former-hill-staffers-launched-10-million-bbq-business/). Brett wrote back to me and suggested that we meet. I figured that he had an idea for a BBQ fundraiser. It never dawned on me that he was a lobbyist and wanted to work with us pro-bono. 

Brett learned about Mattie's story and the Foundation through a local business listserv. By the time we met with him, he was very familiar with this blog and our message resonated with him. So much so that he worked closely with us for several years. It is Brett who inspired me to branch out and host the FIRST ever psychosocial symposium for childhood cancer on Capitol Hill in 2012. Believe it or not, back then the discussion of psychosocial care and cancer were NOVEL! Most advocates were solely focused on the medicine and drug development. We had a new message, and as you know NEW and different aren't always celebrated. 

From this Symposium, we tasked the researchers in attendance to create an evidence based Psychosocial Standard of Care. The rest is history. However, I am not sure we would have gotten to where we are a decade later, if we never held this Symposium. Which is why I feel Brett is a good coach for me. 

A few years ago, we asked Brett to serve on the Mattie Miracle board. Today we went to visit him at his office because he wanted a strategy session with us. For a while now, board members have encouraged me to think bigger. That the potential of Mattie Miracle is even larger and part of me doesn't want to hear it. I don't want to hear it because at times I can't handle more work and if we grow larger, my fear is that the focus moves away from Mattie. Today, Brett was able to reframe what growing larger could mean and we talked about ways to begin working toward this goal. Of course Peter's mind is already up to speed with what Brett is proposing and I on the other hand, need to absorb the information and take it step by step. 

Changing my thinking is no easy process or task. But like so many difficult conversations in my life, I can only hear such topics from certain people. People I deem trustworthy and having the best interest of the Foundation in mind. It took me ten years to get the Foundation up and operational, and to the place it is today. For ten years we have focused on DOING and as such, our reputation was built. It was built based on our accomplishments. Of course our next ten years will also be action oriented but at the same time it is important to bring more awareness of what we do and what we plan on doing. It is with these next strategic steps that Brett and his team will be helping us. 

January 21, 2020

Tuesday, January 21, 2020

Tuesday, January 21, 2020 -- Mattie died 538 weeks ago today. 

Tonight's picture was taken in June of 2009. This was what Mattie looked like after his third surgery, which was for a sternotomy. Mattie's chest had to be opened up so that 9 lung tumors could be removed. Whether I post this photo or not, this vision of Mattie after each surgery is permanently etched into my mind. Not to mention the sounds of pain, frustration, and hopelessness. You don't forget this as a parent, and I carry each and every experience we had with Mattie into my advocacy work.  





Quote of the day: Though 11 million American children have special health care needs, few meet Supplemental Security Income's (SSI, through the Social Security Administration) strict eligibility standards - either because their disabling conditions aren't severe enough or because their families' income and savings exceed the program's low limits. Indeed, just 1.7 percent of all children receive SSI benefits. To qualify for SSI, a child must have a very serious condition that is backed up by medical evidence. ~ Kathleen Romig (https://www.cbpp.org/research/social-security/ssi-a-lifeline-for-children-with-disabilities)


We spent the day with the Committee on Childhood Cancers and Disability at the National Academies of Sciences, testifying on the functional impairments of childhood cancer, and providing input to the Social Security Administration. We are helping to shape policy!
Peter and I attended the entire committee meeting today from 9:30am to 4:30pm. It was a great experience for us, as we got to hear speakers from Dana Farber, Children's National Medical Center, St. Jude, and Children's Hospital Los Angeles. 

The committee asked me to serve on a panel, to give voice to a child and family's experience with cancer. Particularly focusing on how childhood cancer produces impairments (physical and psychosocial) in children and how these impairments affect overall functioning and qualify of life. 

How did the committee find out about me? Well three authors of the Psychosocial Standards of Care serve on this committee. This is Barbara Jones. Barbara is the Associate Dean for Health Affairs at the University of Texas at Austin in the School of Social Work. We have known Barbara since 2013, when we held the first think tank on the Psychosocial Standards at a national conference. Barbara served as the panel moderator today. 

Me with Megan Elam (Director of School Services at Cincinnati Children's Medical Center) and Stacia Wagner (President of the Children's Brain Tumor Foundation). All three of us presented along with Dr. Greg Aune (who called into the meeting). Greg is a childhood cancer survivor and a pediatric oncologist. He has a very powerful story about the long term physical and psychosocial consequences of cancer. 

I will highlight some of the lessons learned from today's meeting in future blogs. As we found some of the cutting edge research presented quite impactful. 

Below are my slides. I was asked to talk 7 minutes total. So I had to be brief. In that time, I had to illustrate who Mattie was, his impairments, and the long term consequences on him and us. 

After we all presented, the committee of 16 people got to ask me and the panelists questions. I honestly did not think medical doctors (who comprised much of the group), would ask me questions. However, not only did they ask questions, their questions were substantive and very thought provoking. As I can see they grapple with how to tell families about psychosocial issues, about discussing long term disabilities, and other life altering conversations. Mind you, the system sets up these clinician for failure, because there isn't enough time allotted for them to spend with each patient. 

My first slide told them a little bit about Mattie and his experience. Highlighting that Mattie did not have these mental health issues prior to cancer and that after three months into treatment Mattie NEVER walked again. So as parents were were faced with childhood cancer and profound disabilities. 
This slide focused on the physical impairments and their impact. I specifically wanted to show photos to get my message across. 
But for Mattie, I would say that the psychosocial impairments almost outweighed the physical ones. They were also very intertwined because Mattie's physical disabilities impacted his mood and how he felt about himself. 


Briefly talked about the Foundation and the important role psychosocial providers play in assessing and treating functional impairments. 
Naturally I couldn't end my talk without mentioning the Psychosocial Standards of Care. My hope is that the Standards are specifically addressed in this report to the Social Security Administration. 

Needless to say, as I sat on the panel, my initial though was..... what am I going to share with these professionals and researchers? After all my story isn't about the data, it is personal and on-going. Yet I found the committee was listening and truly interested in our lived experience. Any time, I can share Mattie's journey and potentially change the way care and support are provided, I view it as a good day. 

January 20, 2020

Monday, January 20, 2020

Monday, January 20, 2020

Tonight's picture was taken in January of 2005. Mattie was two and a half years old and as you can see I wanted him to pose for a photo of us by our Christmas tree. I have no idea where we received the Happy New Year's hats. I most likely saved them from an event we went to before Mattie was born. Despite my best attempts to get Mattie to take a New Year's photo, it never happened. I think Mattie's face says it all on how he felt about my photo request!







Quote of the day: Lucky is the spouse who dies first, who never has to know what survivors endure. ~ Sue Grafton



On January 20th, I always post a tribute to my maternal grandmother. She died on January 20, 1994, at the age of 86. My grandmother lost her husband to colon cancer (when she was in her 50's) before I was born. By the time I came along, my grandmother was already living with my parents. So to me a multi-generational household was normal. 

This photo was taken at my grandmother's surprise 80th birthday party. Pictured with her was my mom's friend Marian and Naomi, my lifetime friend's mom.
This photo was taken probably when I was around 10 years old. It had snowed and my grandmother and I went outside to shovel. In tow was our collie, Heidi. 
A photo of me shoveling with grandma. She had to be around 72 years old in this photo, but she was sturdy, believed in doing things herself, and loved all creatures big and small. 

Facts about my grandma:

  1. She was born in 1907, in New York. 
  2. Both of her parents were born in Italy. 
  3. She was the oldest of five siblings.
  4. She married at the age of 16. Her husband was born in Italy and was a contractor for commercial and residential properties. 
  5. She had three children. Her middle child died. 
  6. Though she did not work outside the home, she had numerous skills. Cooking being at the top of the list. 
  7. She was a born caregiver and cared for everyone in her family. 
  8. She sponsored many family members to come to America, and is in essence responsible for their successes and improved quality of life. 
  9. She was a kind, gentle, caring, and loving person. With a very easy going personality. 
  10. She had two grand-daughters, but we shared a very close bond. As I was known to call her "mom."
  11. Her favorite color was green. 
  12. She introduced me to Days of Our Lives at an early age. To this day, I still watch it. 
  13. She played the piano by ear. 
  14. She wasn't a fan of chocolate (not unlike Mattie).
  15. She wasn't squeamish. She could handle everything from mice to seeing blood. 
  16. She did not know how to drive. 
  17. She loved to read and was well informed about all current events. 
  18. She was a Bob Hope and Bing Crosby fan. As a result, I have seen all the Road to.... movies. 
  19. She loved lily of the valley flowers. 
  20. She suffered a massive stroke in 1990, which left her physically disabled. She died 4 years later.  

January 19, 2020

Sunday, January 19, 2020

Sunday, January 19, 2020

Tonight's picture was taken in February of 2008. Mattie was 5 years old and was walking with us on Roosevelt Island. It was not unusual for us to walk the Island almost every weekend, regardless of the weather. I also never went to the Island empty handed, as I knew Mattie loved to feed the duck. So there was always bread in tow. 


Quote of the day: Anything is good if it's made of chocolate. ~ Jo Brand


We have been invited to a friend's house  tonight. I typically don't like coming empty handed to someone's home, so I asked what I could bring. I gave a list of possible items and my friend picked the chocolate cake. After all who doesn't like chocolate, especially on a cold winter's day? Of course this is a rhetorical question really, as Mattie hated chocolate. He did not like its color and he especially disliked its smell and taste. 

I can't recall when I first made this chocolate cake recipe. What I love about it is that it is super simple and yet delicious without being sickly sweet. I have learned over the years that the quality of the cocoa you bake with makes a huge difference! As I could repeat this recipe with a different cocoa and it could taste completely different!
Not unlike weekends with Mattie, weekends with Sunny involve outdoor time and walks. Sunny loves Roosevelt Island, so this was his treat today. I can't tell you how many dogs were out and about with their owners. Sunny is super social and he wanted to meet and greet every pooch who passed our way. 

Check out what Sunny spotted on a tree.....................
A huge hawk! It was a funny feeling watching this bird, because I got the distinct feeling he was staring right back at us.