Mattie Miracle 10th Anniversary Walk was an $119,000 success!

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: www.mattiemiracle.com 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

July 28, 2018

Saturday, July 28, 2018

Saturday, July 28, 2018

Tonight's picture was taken in July of 2009. Mattie was outside on our deck and playing in his sandbox. Keep in mind that Mattie had a broviac. This was a central venous catheter inserted into the large vein leading directly into Mattie's heart. But the catheter had two tubes hanging from Mattie's chest. Any time Mattie was playing or near water and sand, I worried about these catheters. Because if pulled hard, Mattie would instantly bleed out and die. Of course if the catheters got dirty, that was also a breeding ground for an infection. Of course any infection would have an impact on the timing of chemotherapy administration. So it was a fine balancing act for us to monitor Mattie versus us allowing Mattie to be a child with moments of normal and fun. 


Quote of the day: A hero is someone who has given his or her life to something bigger than oneself. ~ Joseph Campbell


This week, Peter came across an article that was being promoted on-line. The article was in Scientific American. What caught Peter's attention was the title of the article. So naturally he read it and then forwarded it along to me. When Peter emailed it to me, he wrote...... "we need to follow up on this!"

With that note, I was inspired to quickly read the article and to determine what Peter saw that needed to be corrected. He did not even have to tell me, that's how blatant the oversight was. What was missing from the article? There was not even a mention of our evidence based Psychosocial Standards of Care for Children with Cancer and Their Families. Which is a problem because the article charges its readers to advocate for psychosocial care as a Standard of Care. Which one can only conclude means that this is NO STANDARD currently exists. 

I encourage you to read the article, Understanding the Psychological Effects of Childhood Cancer. It can be found by clicking on this link:  

https://www.scientificamerican.com/article/understanding-the-psychological-effects-of-childhood-cancer1/



The opening paragraph, states, "Thanks to advances in treatments, the overall survival rate for childhood cancers has increased from 10% a few decades ago to nearly 90% today." I am not alone in my disdain for this misleading fact. In fact, I have been at conferences before where parents stand up and actually confront the researchers and correct them! Who is right? Parents of course. 

This is a table generated by the American Cancer Society that specifies the five year survival rate for different forms of childhood cancer. What you will immediately notice is that ONLY a few childhood cancers have a high survival rate. Cancers like Mattie's, have a 71% survival rate, which means that 29% of children don't survive. 

I truly wish we could get scientists and clinicians to converse about the REALITY!!! Putting that aside, at the end of the article the author states, "In addition to pushing for cures for cancer, we should also advocate for psychological support as a standard of care for childhood cancer. This means having social workers, therapists, and Child Life advocates as a part of the treatment team, and with the family every step of the way."

As soon as I read the article, I googled the author, Dr. Hilary Marusak, who is a neuroscientist and a frequent contributor to Scientific American, and obtained her email address. Within minutes, I wrote this to her:

Dear Dr. Marusak,

I wanted to write to you today to let you know that I was very pleased to see your article entitled, Understanding the Psychological Effects of Childhood Cancer in Scientific American.  You brought up excellent points, particularly regarding childhood cancer being more than a medical disease. 

My husband and I lost our only child, Mattie, to osteosarcoma in 2009. Two months after he died we established the Mattie Miracle Cancer Foundation. The mission of Mattie Miracle is to enhance awareness of the psychosocial impact of childhood cancer and increase access to psychosocial services for children and their family members. As our tagline indicates, we learned first hand that childhood cancer "IS NOT JUST ABOUT THE MEDICINE." Mattie developed clinical depression, anxiety, and medical traumatic stress while on treatment, and had no mental health issues prior to his cancer diagnosis.

We live in Washington, DC and support direct psychosocial services, by funding child life professionals at two local hospitals. In addition to our local work, we have been working with a team of psycho-oncologists from around the US, Canada, and the Netherlands since 2012. Mattie Miracle had the vision to create evidence based psychosocial standards of care and with Dr. Lori Wiener's leadership at NCI, the Standards were published in a dedicated supplement of Pediatric Blood & Cancer in December of 2015. I wanted to write to you today because I know you mentioned the following in the article..... "in addition to pushing for cures for cancer, we should also advocate for psychological support as a standard of care for childhood cancer." I am happy to tell you that what you are suggesting already exists and like you, Mattie Miracle wholeheartedly supports this initiative to expand the message about comprehensive cancer care including psychosocial support. 

The Psychosocial Standards of Care for Children with Cancer and Their Families were developed over a three year time frame, involved 85 health care professionals from 44 institutions across the U.S., Canada, and the Netherlands. The project resulted in the largest and most comprehensive psychosocial standards research study to date in which 1,217 journal articles were reviewed.  These historic evidence-based standards define what children with cancer and their families must receive to effectively support their psychosocial needs from the time of diagnosis, through survivorship, or end of life and bereavement care.  The Standards have been endorsed by 16 professional organizations: 1) American Academy of Child & Adolescent Psychiatry (AACAP), 2) American Childhood Cancer Organization (ACCO), 3) American Psychological Association's Society of Pediatric Psychology (SPP - Division 54), 4) American Psychosocial Oncology Society (APOS), 5) Association of Pediatric Hematology/Oncology Educational Specialists (APHOES), 6) Association of Pediatric Hematology/Oncology Nurses (APHON), 7) Association for Pediatric Oncology Social Workers (APOSW). 8) American Society of Pediatric Hematology/Oncology (ASPHO), 9) B+ Foundation, 10) Canadian Association of Psychosocial Oncology (CAPO), 11) Cancer Support Community, 12) Children's Cause for Cancer Advocacy (CCCA), 13) Children's Oncology Group (COG), 14) CURE Childhood Cancer, 15) National Children's Cancer Society, and 16) St. Baldrick's Foundation. 

Currently the team is working on strategies to implement these Standards around the Country. We welcome any questions you may have about the Standards. Given your own work to help children cope with cognitive late effects, I thought you would appreciate having access to the Standards. Mattie Miracle has paid for indefinite open access to the Standards because we are passionate about changing the way cancer care is delivered to children and their families.  For we know all too well that the psychosocial issues DO NOT end when the treatment does. Below you will find some links to the Standards that you may find helpful. Thank you for all the work that you do and for calling attention to the psychosocial aspects of cancer care. In appreciation, Vicki

Helpful Links:

Standards
History
Read Them
Endorsements
Standards Update
Implementation
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Hilary wrote me back the next day and was very gracious. She let me know that she knew about the Psychosocial Standards of Care and was sorry for our loss. She then asked how she could help with the implementation process of the Standards. So I asked her whether she could write a follow up article for Scientific American highlighting the Standards and letting her audience know that Psychosocial Care is part of a Standard of Care and how advocates can ensure this by promoting these evidence based Standards. Hilary replied that she would be happy to, but that we had to check with the magazine's editor. So with that, I wrote the below email to the editor:

Dear Mr. Cook,

I received your email address from Dr. Hilary Marusak. You published a great article of hers entitled, Understanding the Psychological Effects of Childhood Cancer in Scientific American. As I said to Hilary, it is wonderful to see the psychological impact of cancer highlighted in such a well read and prestigious publication. 

I included my email trail with Hilary below so that it would help you put what I am writing into context. In a nutshell, my husband and I are childhood cancer advocates and run a non-profit called the Mattie Miracle Cancer Foundation. The Foundation was created two months after our only child, Mattie, lost his battle with Osteosarcoma. What we learned from Mattie is that "Childhood Cancer is NOT just about the medicine." In fact, there are real life psychological issues that arise from the treatment and the cancer experience in general. Which is why Mattie Miracle's mission is to enhance awareness of the psychosocial issues associated with childhood cancer and increase access to psychosocial support for children with cancer and their families. 

Naturally Hilary's article captured us as soon as we saw its title. In the article Hilary mentions....."in addition to pushing for cures for cancer, we should also advocate for psychological support as a standard of care for childhood cancer." The reason I reached out to Hilary was I wanted to make sure she was aware of the Psychosocial Standards of Care for Children with Cancer and Their Families which were published in Pediatric Blood & Cancer in December of 2015. These historic evidence based Standards were the vision of Mattie Miracle and their development was led by Dr. Lori Wiener at NCI. I have included links and more information about the Standards below. 

It is my hope that you will consider Hilary writing a follow up piece to her article highlighting the Standards, Standards which she is advocating for as being part of comprehensive cancer care. Psychosocial support as a Standard of Care is exactly why these Standards were created. It would be wonderful to share this amazing three year long research project involving over 85 psycho-oncology professionals from the US, Canada, and the Netherlands to develop Standards that will ensure optimal psychosocial care for children with cancer and their families from the time of diagnosis, throughout treatment, and into survivorship or end of life and bereavement care. 


It is an honor to e-mail a Pulitzer prize winner and we thank you for your time and consideration to this request. We believe that highlighting the Standards in your publication will enable us to reach a much larger audience to spread awareness of the importance of these Standards of Care and how the Standards can change the direction of cancer care in our Country.  In appreciation, Vicki

--------------------------------------------------------------

The editor did write me back in a very timely fashion, but here was the response:

Dear Vicki, 

Thank you for your kind note and for your important work on this issue. Unfortunately, it is not going to work to have a follow up post, but I wish you luck and appreciate your efforts. 


I am not sure your reaction to the above response, but mine was wow! I just explained that I lost my child to cancer and the work we are doing with the Foundation. Yet there was NO acknowledgment to either. Which to me is very telling. But what surprises me is that as the editor of his publication he isn't interested in correcting this oversight in any way. Which means to me that he truly has no interest in the content he was publishing in the first place. Why aren't facts of a story important anymore? This is a rhetorical question! But what this tells me very BOLDLY is that the advocacy work Peter and I do is needed if we ever are going to make any headway with psychosocial support being incorporated into comprehensive cancer care. 

July 27, 2018

Friday, July 27, 2018

Friday, July 27, 2018

Tonight's picture was taken in July of 2009. As you can see Mattie was in the out-patient physical therapy clinic at the hospital. Whether Mattie was in the hospital or out of the hospital, starting in the Spring of 2009 he was consistently doing physical therapy. Remember the goal back then was to retrain Mattie to walk so he could return to school. We had no idea that we would be facing a terminal diagnosis the following month. In this photo, Mattie was sandwiched between Anna (his therapist) and his close buddy in cancer (Brandon). Brandon was diagnosed with cancer around the same time as Mattie, so they went through treatment together. Even after Brandon's treatment was completed, he would come back to the hospital on a regular basis to visit Mattie. A true friend!


Quote of the day: The most courageous act is still to think for yourself. Aloud. Coco Chanel


I think Coco Chanel's quote is brilliant and spot on. This year Mattie Miracle launched two research grants. One hosted through the Association of Pediatric Hematology/Oncology Nurses (APHON) and the other through the American Psychosocial Oncology Society (APOS). For more info on the Mattie Miracle APOS grant, go to: Mattie Miracle Grant

For several weeks now, I have been reviewing proposals. Keep in mind that we originally received over 20 grant applications, and from there we whittled it down to 12. From that 12, we had to select one. This one recipient will get a $10,000 grant to conduct a study that will help implement the Psychosocial Standards of Care for Children with Cancer and Their Families. 

Because the grant is administratively handled through a professional association, the association has a research review committee which evaluates the scientific rigor of the proposals. However, the condition on any of Mattie Miracle grants is the simple fact that we want access to all the proposals, all the rating criteria, and decisions. 

This week, I began to see what the committee deemed important and top quality research to fund, wasn't in line with my thinking. Typically I am on the same page with this group of professionals, who I have worked with many since 2012. So when I realized that we weren't, I truly wasn't sure how to handle it. 

Never however did I waiver in my feelings about the research. I wasn't swayed by their evaluations what so ever. Instead I would say I was getting frustrated and as Peter knows, when I get frustrated, I can sit with that for a long time, until I simply get mad and then have to do something about it. 

I think this is where I differ from a pure researcher. I think research is important but not because it generates more questions and MORE RESEARCH. To me research has to produce something meaningful that will help guide clinical care. So in essence the research we wish to fund must be able to provide a model, an intervention, or strategy that will help other cancer treatment sites implement the Standards of Care. So what did I do about this conflict of difference?

Given the top leaders in the field evaluating these proposals, one could have been intimidated and therefore compliant. That's not me. So onto option two. Option two was I wrote an email to the entire review committee last night and in a professional manner explained my point of view. I felt that the committee had to hear directly from me. I wasn't going to deliver this message any longer through an intermediary. Want to know the result of this group email?

The result was I helped the committee streamline their decisions today and they thanked me for my clarity and were eager to continue working with us. So the moral of the story is to always stick with what you believe in and don't be afraid to speak ALOUD. As I mentioned to the researchers, I have the lived experience with childhood cancer and this gives me insights about what will and will not work when designing studies for this population. If ever in doubt, teacher Mattie is a live and well in me!

July 26, 2018

Thursday, July 26, 2018

Thursday, July 26, 2018

Tonight's picture was taken in July of 2009. I absolutely LOVE this photo. Mattie received this Sponge Bob figurine from a friend and Mattie decided to pose for the camera and give me his best Sponge Bob impression. Mattie knew I wasn't a Sponge Bob fan, which maybe what inspired him to like the cartoon character even more. 

Quote of the day: Parting is all we know of heaven and all we need to know of hell. ~ Emily Dickinson


Peter and I drove to Baltimore today to present a $45,000 check to Children's Hospital at Sinai. This is the second hospital we have endowed a Mattie Miracle Child Life Program Fund. Pictured with us from left to right are:

Dr. Aziza Shad (one of Mattie's oncologists, who actually was on call during Mattie's death) and Dr. Jonathan Ringo (President of Sinai Hospital)

When I was asked where we wanted to have the check presentation, I immediately said the child life playroom. The playroom always meant the most to Mattie when he was in treatment at Georgetown University Hospital. Also since we are funding a child life position, it makes sense that we embrace where this professional will be working. You will notice I was holding a photo of Mattie in this picture and our Snack and Item Cart was beside me. 

At the presentation Dr. Shad said something as did Dr. Ringo. Then I spoke on behalf of the Foundation. Given that this hospital never met Mattie, the only way I can bring him alive to for them is through my stories and conversation. 

Pictured from left to right:
Joanne Lanzo (Director, Division of Pediatric Hospital Medicine), Laura Cohen (Child Life Coordinator), Susan Daw (Director of Women's and Children Services), Dr. Aziza Shad (Chief of Pediatrics), Dr. Jonathan Ringo (President of the Hospital), Peter, Vicki, Kristen Mylotte (Child Life specialist) and Kelly Beck (child life specialist)

No check signing would be complete without Mattie cupcakes. Of course NO ONE at this hospital knew our cupcake story, so I had to explain it. When Mattie was managing with cancer, he rarely ate. So when he requested any sort of food, we gave it to him. Mattie was motivated by cupcakes. They were incentives to complete physical therapy. Which is why cupcakes are always present at our events. They mean that Mattie is with us! Notice the butterfly sugar candies on top of each cupcake. Everyone thought I bought these cupcakes today. On the contrary I baked all of them on my birthday!

After the check presentation, we pushed around the Snack and Item Cart with the child life staff. I had done this once before at the Hospital, but it was Peter's first experience today at Sinai. The staff enabled us to meet children and families and hear direct feedback about the Cart.  
Me with a dad! His child was asleep in the room, but apparently his daughter loves the Cart and really wanted to meet us. 
This young lady's name is Victory. The photo doesn't do her justice, as she has a smile that lights up a room. She wasn't feeling great today and really wanted no visitors. Until she heard that it was us with the Cart. Her mom said Victory hasn't smiled all day, until she got to see the candy on Cart. 
This is Isabella and her mom. Isabella was not happy today as she had to get a blood draw involving needles. Like Victory's mom, Isabella's mom told me the same thing. She said the Cart is the one thing that consistently provides her daughter with smiles. 
This is Noam and his mom. Another cutie with a great smile. You want to know what excited Noam? Try a blue toothbrush. He was thrilled to be able to pick one out the basket, not to mention filling up a bag filled with treats. 

July 25, 2018

Wednesday, July 25, 2018

Wednesday, July 25, 2018

Tonight's picture was taken on July 25, 2009. The last birthday I celebrated with Mattie alive. That day, he designed a lovely lighthouse birthday card for me with the help of my in-laws. Mattie knew I loved lighthouses, and I think with more time, he would have been just as fascinated with them as I am. 

But check out that smile! I honestly do not know where Mattie found the energy or inner happiness to smile. Given all he endured and the fact that cancer was rapidly spreading throughout his body, he was absolutely amazing. 




Quote of the day: The secret of staying young is to live honestly, eat slowly, and lie about your age. ~ Lucile Ball



Another gray and rainy day in DC! This marks 5 days in a row of this delightful weather. Peter took me out to lunch at Fiola Mare today. This restaurant is very close to where we live. So we literally walked to lunch alongside the Potomac River. Thankfully while walking, there was no rain. 
We had a lovely waiter today who was efficient and not obtrusive. Which has happened to us once before at this restaurant. But the food and setting are so special. 
We had a lovely four course lunch. Peter started with a stone fruit salad. Are you aware of stone fruit, being cherries and peaches, or any fruit with a  pit? Any case, Peter had a salad and I had gazpacho. 
















Then we got their famous lobster ravioli to split. 
Peter had scallops and I had halibut. As you can see I ate most of it before I remembered to snap a photo of the dish. It was delicious. 
For dessert we had a lemon spumoni, a dessert with bing cherries and ricotta gelato, as well as their complimentary birthday dessert. Lunch was my favorite part of the day! It was a lunch to remember. 
Meanwhile, tomorrow we are going to a check signing party at Children's Hospital at Sinai. For every check signing we have ever done, I always bake cupcakes. 

Mattie loved cupcakes while he was undergoing cancer treatment. In fact, we used the cupcakes as incentives to do physical therapy. So by bringing cupcakes to our check signings, Mattie is always with us. 
This year I found sugar shaped butterflies. So I added them to the top of the cupcakes. As my loyal readers know, butterflies are the symbolic creatures in nature that remind me of Mattie. 

July 24, 2018

Tuesday, July 24, 2018

Tuesday, July 24, 2018 -- Mattie died 462 weeks ago today.

Tonight's picture was taken in July of 2008. Mattie was diagnosed with cancer on July 23, and the following week, he underwent a bone biopsy. Which is why you can see Mattie and I examining his bandage. The only way that osteosarcoma becomes a confirmed diagnosis, is through a biopsy. Even a week into his diagnosis, Mattie was becoming traumatized. He was poked and prodded endlessly and also endured MRI's and other scanning without sedation. 


Quote of the day: Youth is happy because it has the ability to see beauty. Anyone who keeps the ability to see beauty never grows old. ~ Franz Kafka 




I went out to lunch today with my friend Tina. Tina wanted to celebrate my birthday. It was pre-birthday lunch and we had a wonderful three course experience at Chez Billy Sud, which is a charming french cafe in Georgetown. Tina and I are both foodies, so eating together is a fun experience. Because food is important to us. 
We both started with this chilled summer soup of corn. When I tell you it was incredible, I am not kidding. 













My entree was this wonderful trout. Actually I like trout in general, but this dish was absolutely incredible. 
We ended the meal sharing this incredible lemon olive oil cake. It may not sound good, but it was amazing. It was served with creme fraiche ice cream which was delicious. 

I have to say that even though it was another gray and rainy day in DC, having a memorable lunch made the day less blue. 

July 23, 2018

Monday, July 23, 2018

Monday, July 23, 2018

Tonight's picture was taken on my birthday, July 25, 2008. Two days after Mattie was diagnosed with cancer. I will never look at July 23, diagnosis day, the same way. I can recall the feeling of intense stress and anxiety after the diagnosis, so much so that both Peter and I had trouble sleeping for days. It was like some sort of switch went on in our bodies and we began working at an intense level like no other imaginable. 


Quote of the day: Grieving the loss of a child is a process, it begins the day your child passes and ends the day the parent joins them. ~ B.J.Karrer


I can't believe that ten years ago today Mattie was diagnosed with cancer. To me it seems like it was just yesterday. Yet the world keeps revolving and progressing forward, but we partially live in the past..... remembering. It doesn't matter how much time goes by, July 23 immediately transports us right back to Virginia Hospital Center, where Mattie was diagnosed.

Ask anyone who was diagnosed with cancer, the specifics of the moment they heard the news.... and you will definitely hear a story. It is something that is burned into your memory forever. In Mattie's case, I took him to the pediatrician on July 23, 2008, thinking he had a sprain or pulled a muscle in his arm from tennis camp. Thankfully the doctor took our complaints seriously and ordered an x-ray on the spot. The x-ray took forever to complete and I was irritated with the technician. After the x-ray, the technician told me we had to wait in a holding room. It never dawned on me why! In that holding room were other patients, all adults. There was a telephone in the room and it began to ring. NO ONE approached the phone to answer it, so I did.

A radiologist on the other end of the phone asked me my name and whether I was Mattie's mom. When I said yes, he told me I had to go right back to the pediatrician's office. I did not like that answer or his tone, so I told him I wasn't moving until he told me what he saw on the x-ray. It was at that moment, on the phone with Mattie and strangers watching me, that I learned Mattie most likely had Osteosarcoma. To this day, I still HATE phones and talking on them.

You maybe asking why was it Christmas for us on July 23rd? It was Mattie's idea! Right after being diagnosed, on our way home from the hospital, we asked Mattie what he wanted to do. He requested getting out all of our outdoor Christmas lights to decorate our deck. When your child is diagnosed with cancer, it is amazing what you will agree to and do!




On this 10th anniversary of Mattie's diagnosis, we remember our beautiful 7 year old who died too soon....who was brilliant, gifted, creative, and always humorous!












Today, I returned to the scene of the crime. The place where Mattie was diagnosed with cancer. I did not go back for nostalgia, I went for a mammogram. I am not sure why I booked this test on this anniversary date, but clearly I wasn't thinking. Never the less, they say that there is a high incidence between boys who get osteosarcoma and their moms who develop breast cancer. So I don't miss my yearly scan. 

You see that front entrance in the above photo? Well it was at that entrance that I met Peter, the day Mattie was diagnosed with cancer. I literally text messaged him at work and told him he had to get to the hospital as soon as he could. I text messaged him..... "Mattie has C." I literally couldn't write the word cancer back then!


Meanwhile this evening, I had a lot on my mind. I had Sunny in tow with his filled poop bag in one hand, along with my cell phone and his leash in the other. As I went to throw out the poop bag, I accidentally flung in the bag and my cell phone. As soon as I recognized what happened, I started screaming. Sunny did not know what was wrong! I quickly got him back home and I ran downstairs to our front desk for help. Thankfully we know all the staff that work at our complex. They mobilized quickly and had a maintenance worker come with me to our dumpster. However, they prepared me for the fact that the phone probably broke going down the shoot over three floors. If it did not break then it most likely would get compressed by the trash compactor which consolidates the trash in the dumpster. 

My phone is important to me and the thought that it broke or was shattered into pieces was too much to handle. Any case, my new hero is Jose. He went with me to the dumpster. He opened up the door of the dumpster and I had him look first. I couldn't bear to see the reality. When he told me it was absolutely fine to look, I was stunned. There was the phone..... just sitting there. No garbage around it, not a scratch or a ding. It was sitting there waiting for me to pick it up. I view this as my birthday miracle for the week!

July 22, 2018

Sunday, July 22, 2018

Sunday, July 22, 2018

Tonight's picture was taken over the July 4th weekend in 2009. Mattie was still in treatment and we did not know about his terminal status. Our friend invited us to a weekend away. It was local, at a resort called Lansdowne. Needless to say, that weekend was so horrible, that if I never see Lansdowne again that will be too soon. Mattie was very angry about the fact that other kids were living a normal life and he was stuck in a wheelchair, looking so different. He may have acted fine around friends, but toward Peter and me, he lashed out. So much so, that after about a day, we never left the hotel room. 


Quote of the day: We die as often as we lose a friend. ~ Publilius Syrus


It is another winner of day today in DC. With the non stop rain. I never liked rain before, but now being a dog owner, I truly HATE it. In between Sunny walks, I visited a friend. During my visit, my friend was telling me about a friend of hers who is like me. The friend lost a child to cancer. Needless to say my friend was telling me that at times she feels anger from her friend, directed at her! In a sense she feels that her friend is jealous that my friend has children who are alive and healthy and she does not. Needless to say my friend is feeling badly and I know personally how people can feel when I have lashed out at them. Which is why it was easy for me to understand both sides of this equation.

Is there any easy answer or solution to this? The answer is NO. However, nothing will challenge a friendship between two women greater than childhood cancer. It is a very polarizing issue I have found. What I have learned over the years is regardless of how close friends are to me, they can't possibly understand the long term effects of child loss. Losing a child, impacts every year of your life, all milestones, holidays, the future, and daily living. Anyone who wants to deny this FACT, is not facing reality or hasn't come to terms with this huge loss. Which is why time doesn't heal all wounds and in fact the only thing time does is confuse our friends and family. Because as more time goes by, those around us assume that we are managing, coping, and have found a way forward. Finding a way forward doesn't mean that we still don't get upset when hearing about pregnancies and milestones of other children. These are topics I still don't like to hear about, which is another reason I hate Facebook. Facebook is like living in Disneyland, where only the positive, the happy, and fun are rewarded with likes and loves. 

So how do you handle moms like me? How do you handle us when we lash out? Well first and foremost, I don't think a bereaved mom will lash out at just anyone. We tend to pick those we deem as safe. However, regardless of how close the friendship, directed anger is never appreciated. I have to say my friends did not deal with my anger well, and therefore, it was I who had to alter my behavior. I feel as a bereaved mom, I am constantly making concessions everyday to fit into the world. What I would have loved was if someone said to me...... "I know you are angry. I know our lives are different, and that it is hard to hear me talking about my children. I also know that you aren't really angry at me, but at the situation and your loss of Mattie." MIND YOU THIS SHOULD NEVER BE SAID ONLY ONCE!!! Because hearing it once, will not magically change the situation between friends.

Part of the FRUSTRATION that bereaved parents face is we assume those around us DON'T want to understand and also DON'T get how their words or lack of words affect us. Sometimes just expressing that the loss is real can change the whole direction of a conversation between friends. But at the end of the day, I always wonder why in a group of women, everyone feels it is perfectly fine to talk about their children in front of me. No one ever acknowledges that I can't participate in this conversation and or that this conversation has consequences on how I feel. With that said, I live in hope!