Saturday, February 6, 2016

Saturday, February 6, 2016

Tonight's video was taken on February 18, 2009. It was clearly the night time, as you can hear our sound machine (sounds like rain) running in the background. We used a sound machine to drown out the beeping of machines and the chaos in the hallways of the PICU. However, I captured Mattie on video because when he did not want to be touched or have his broviac catheter accessed. When Mattie felt this way, he would try to curl up in a ball. Which wasn't easy for him given his extensive limb salvaging surgeries. In the video you can hear me talking, but I honestly can't recall who was in the background talking with me. It had to be one of Mattie's nurses, but I can't place her voice. 


Quote of the day: Death laughs, no one else does. ~ Amy Neftzger

Peter and I spent most of the day at home. However, by late afternoon we walked and even went out to dinner. On our walk home, we passed the White House. I couldn't get over what I was seeing because the fountain (closest to the gate) looked like it was colored GOLD. Since the childhood cancer community couldn't get the President to light the White House gold during childhood cancer awareness month, this has become a hot topic and sensitive issue for those of us touched by childhood cancer. So I chuckled to Peter and said.... this must be an accident, because the fountain looks like it is lit in Gold lights. 

I received this comment today on the blog from one of Peter's clients in Oklahoma. Melody said, "While Peter was in Oklahoma, he showed us his new office space. While I love the idea of just being able to talk to the person next to you without having to move an inch, I hated the no personal items policy. Glad he put the kabash on it! Love the windowsill! Fat chance there isn't a picture of Mattie on his desk :) Been following the blog for years! Glad I found the comment box."


I was thrilled to receive Melody's comment tonight. For many reasons. The first of which is Peter loves traveling to Oklahoma. When Peter travels there, the first thing I hear about is how nice people are on the plane. Which to me is unheard of traveling coast to coast. Peter tells me that people have chats and conversations with each other and I honestly laugh because on each coast of the United States, I think we are trained NOT to engage with those around us. I am not saying it is healthy, but it seems to be our reality. Yet I love connecting with people, so I have a feeling Oklahoma would be right up my alley. 

Peter always has a wonderful visit with his colleagues in Oklahoma and this particular visit that he just came home from this week sounded very special. The group went out to sing Karaoke together, and it just sounded like a wonderful way to further relationships and get to know one another better. Clearly not all business travel is pleasant, so when Peter comes back energized this captures my attention.

Of course what captured my attention is that Peter told me that several of his Oklahoma friends read the blog. I am very touched and honored to hear this and again it tells you about the importance of personal connections in Oklahoma. I think I am living in the wrong state! I appreciate Melody's comment because when I heard about Peter's office having a NO personalization policy of one's desk space, I laughed. I laughed because when you spend, in Peter's case 12 hours a day, in a space it is important that you can make your space comfortable and identify it as your own. After all not having an office with four walls and a door is a major adjustment, but asking one to work in a sterile, white washed, no character environment is unreasonable. Naturally decorating with some taste and discretion is important. But it was nice to hear Melody's perspective and to know our feelings weren't unusual.... and she is right.... there is definitely a photo of Mattie (well a few!) on Peter's desk.  

Melody, if you are reading this.... you and your colleagues have made my day! Thank you for reading the blog and following our grief journey with me. Hopefully one day I will meet you in person. 

Friday, February 5, 2016

Friday, February 5, 2016

Tonight's picture was taken on February 5, 2009, seven years ago today. Which is hard to imagine in and of itself. Mattie was pictured with Sally, the story book lady. Sally is immensely talented and one of the only visitors Mattie NEVER turned away. Sally made stories come alive and allowed the children to actively take part in each tale. Whether that was playing a part, making noises and sound effects, or you name it. Sally had a way of totally getting to know each child, so every time she visited she knew instinctively what motivated and intrigued each child. 


Quote of the day: The loss of a loved one is like that of a limb; time may heal the anguish of the wound, but the loss cannot be repaired. ~ Robert Southey


I went out to lunch today with a friend who I have gotten to know quite well this year. We got connected through mutual friends on Facebook. In any case, over lunch my friend asked me who do I talk to about Mattie? This wasn't a clinical question, it was more of a simple and honest question about who hears my tales about Mattie when he was well and of course also listens about the pain and anguish associated with Mattie's cancer battle and death? She asked excellent questions, but my answer truly isn't simple. 

It isn't simple because I would say the loss of a child is not a topic anyone really wants to hear about for a long period of time. I noticed it scared many people away in the first year after Mattie died, and then of course if you survive the first year, most people think that life moves on and things get better over time. However, that of course isn't the case as anyone who has suffered a traumatic loss knows. The loss walks with you always, but you learn to live with this feeling. 

When I got home today, I found Mr. Falcon perched on our bird feeders. He maybe beautiful, but he scares away all our birds. He is just a mean looking thing, don't you think?! 

He is awaiting his next prey! The piercing eyes, the talons, and that beak are all very intimidating to me!

Thursday, February 4, 2016

Thursday, February 4, 2016

Tonight's picture was taken on February 18, 2009. This was classic Mattie! Mattie was in his PICU room building something out of Popsicle sticks and at the same time was eating a cupcake. Mattie was the ultimate multi-tasker. Some people who do more than one thing at a time, don't do either task well. Mattie however, could concentrate on multiple things at one time and the products of each were excellent. 


Quote of the day: As I walk through the redwood trees, my sneakers sopping up days of rain, I wonder why bereaved people even bother with mourning clothes, when grief itself provides such an unmistakable wardrobe. ~ Jandy Nelson

Today is World Cancer Day. Typically when cancer is discussed we think about adults. But we can't forget about our children. Cancer is the #1 killer of children by disease, and every three minutes a child around the world is diagnosed with cancer.

Over the past 20 years only three new drugs have been approved for use in children, while most children are treated with drugs from the 1950's and 1960's. Cancer is much more than a physical disease. We can't forget that 59% of children treated develop a mental health issue and PTSD is well documented in parents whose children have completed treatment.

MORE FACTS:

1. Every day 46 children are diagnosed with cancer (American Childhood Cancer Organization, 2014).
2. Each day, 7 children die from cancer (Surveillance Epidemiology and End Results Cancer Statistics Review/ National Cancer Institute, 2012).
3. As a result of treatment, 59% of children have a diagnosable mental health issue (DeMaso & Shaw, 2010).
4. Childhood cancer threatens every aspect of the family's life and the possibility of a future, which is why optimal cancer treatment must include psychosocial care (Institute of Medicine, 2008 - Cancer Care for the Whole Patient).
5. The provision of psychosocial care has been shown to yield better management of common disease-related symptoms and adverse effects of treatment such as pain and fatigue (Jacobsen et al., 2012).
6. For children and families, treating the pain, symptoms, and stress of cancer enhances quality of life and is as important as treating the disease (Institute of Medicine 2015 - Comprehensive Care for Children with Cancer and Their Families).
7. Childhood cancer survivors reported higher rates of pain, fatigue and sleep difficulties compared with siblings and peers, all of which are associated with poorer quality of life (Children's Oncology Group Long Term Follow-Up Guidelines, 2013).
8. Changes in routines disrupt day-to-day functioning of siblings (Alderfer et al., 2010). Siblings of children with cancer are at risk for emotional and behavioral difficulties, such as anxiety, depression, and PTSD (Alderfer et al., 2003). 
9. Symptoms of post traumatic stress disorder are well documented for parents whose children have completed cancer treatment (Kazak et al., 2004).
10. Chronic grief has been associated with many psychological (e.g., depression and anxiety) and somatic symptoms (e.g., loss of appetite, sleep disturbances, fatigue), including increased mortality risk (Alam et al., 2012).

Today I hosted a birthday luncheon for my friend, Ann. I selected a restaurant overlooking the Potomac River, which was the perfect choice since it was grey and cloudy today. Yet being in this bright, open and picturesque restaurant seemed to help how we all felt. 

The table was garnished with all sorts of flowers which also made it feel like it was spring in February! Around the table with me were many of our mutual friends from Mattie's preschool. It is an interesting dynamic for me to be surrounded by women, in which our commonality is our children. That is how we met, however, I am the only one in the group whose child is no longer living. It is natural that these women would talk about their children, their happenings in their lives, and the issues associated with raising teenagers. Nothing of which I can relate to anymore. Which to put it bluntly is hard. But as a bereaved parent, I could either curl up in a corner and ignore the world (which I do on occasion) or try to function in the every day world. 

For years I knew Ann's favorite dessert is a white chocolate raspberry cheesecake from the Cheesecake Factory. So I asked this restaurant whether I could bring a cake in from the outside. They accommodated my request. 

Our waiter, Anthony, was lovely! He took this photo of us. From left to right (standing) are:
Mary, Catherine, Tina, Jane, Dawnee, and me. Of course Ann is our seated guest of honor.  

Wednesday, February 3, 2016

Wednesday, February 3, 2016

Tonight's picture was taken on February 6, 2009. Mattie was in the child life playroom of the hospital and working on building a volcano. Back when I first started writing the blog, I tried to show only the most flattering photos of Mattie. Photos that may not have shown the reality of what we all were dealing with. I did this because it was hard enough for our support community to accept that Mattie had cancer, but seeing what we experienced on a daily basis most likely would have scared people and even turned them away from reading the blog. The reality was Mattie's limb salvaging surgeries left him quite disabled and traumatized. After surgery and healing, Mattie would never have been able to lift his arms up over his head. His range of motion was severely limited and this frustrated him greatly. As you can see here, the only way Mattie could lift his hand was he had to practically lift his body. Yet when Mattie was involved in activities, he could get absorbed in them and for just a little while he was a child again. 



Quote of the day: Grief is in two parts. The first is loss. The second is the remaking of life. ~ Anne Roiphe


Today I went to see my dentist. While talking to the hygienist, I updated her on all my physical issues since she saw me six months ago. She has known me for quite some time and as I was reporting to her about all the problems I am dealing with, we both had to laugh. We laughed because it just doesn't seem possible that while trying to address one medical issue, the treatment produces many others. 

What came to my mind while talking to her was "This is the house that Jack built." This is a British classic, and a nursery rhythm we read to Mattie often. I included it down below because even to this day it makes me laugh. Basically Jack builds a house, and in the house he has malt (barley). However, there is a rat that eats his malt, so a cat is added to the mix to solve that problem. But it doesn't end there, because the dog bothers the cat. So it is a cumulative tale that makes you chuckle. Yet the analogy of Jack is perfect to my medical conditions.


This is the house that Jack built.

This is the malt that lay in the house that Jack built.

This is the rat that ate the malt

That lay in the house that Jack built.

This is the cat that killed the rat

That ate the malt that lay in the house that Jack built.

This is the dog that worried the cat

That killed the rat that ate the malt

That lay in the house that Jack built.

This is the cow with the crumpled horn

That tossed the dog that worried the cat

That killed the rat that ate the malt

That lay in the house that Jack built.

So what am I talking about? Well I suffer from chronic migraines. I do not know what a headache free day looks like and I haven't for 14 years. I have tried all sorts of medications to address this issue and the medication that I have been taking for the past two years to try to prevent extreme pain caused me to develop kidney stones. Stones that I got every three months. So I had to stop that medication because I couldn't manage the headaches and the kidney stones. However, it should be noted that such side effects only happen in a small percentage of people. In the Fall I had surgery to remove a mass in my breast. The surgery went well but from it I developed costochondritis, which is inflammatory of the ribs. It is very painful and takes months to heal. I was given an anti-inflammatory medication to help speed up the healing process and alleviate pain so I could function on a daily basis. Well don't you know that I would be in the 3% of people who develop periphery neuropathy (numbness) as a side effect of this medication. So now I have the headaches, costochondritis and neuropathy in my legs and arm. If it wasn't happening to me, it would actually be hysterical! Needless to say, I opting for a medication free existence in order to have some sort of quality of life back. 

Tuesday, February 2, 2016

Tuesday, February 2, 2016 -- Mattie died 333 weeks ago today.

Tonight's picture was taken in February of 2009. I mentioned Mattie's footprint on the blog a few days ago. This footprint was taken by his art therapists in clinic. They added it to a welcome sign in the pediatric unit of the hospital. A friend of Facebook sent me this photo today. It is not a photo I have because I was standing on Mattie's left side and this mom was standing behind Mattie. Frankly I did not remember that this mom was even in clinic with me that day! This welcome sign has Mattie's footprint on the right hand side, and on the left hand side is a hand print. But the hand print belongs to Morgan, who at the time was a baby undergoing treatment for leukemia. 


Quote of the day: Death is never easy when you know the people doing the dying. ~ Oliver North

In May 2015, Vice President Biden's son, Beau, died at the age of 46 to brain cancer. Since that tragic loss, VP Biden is committed to finding better treatments and an end to this complex disease. Naturally as a parent advocate, I know MANY parents who have lost children to cancer. However, not having VP Biden's political position we do not have access to the resources to make our requests a reality. 

Yesterday there was an hour long twitter session in which advocates and others could have a dialogue with Dr. Francis Collins (the NIH director) about this Cancer Moonshot initiative. 

This photo was circulating all over the internet. While the cancer community is thankful to VP Biden for his personal commitment to a cancer "moonshot," this moonshot MUST include childhood cancer.

Of course we at Mattie Miracle take it one step further that in addition to funding and supporting biomedical research, this initiative must also support psychosocial research to care for children and families throughout the cancer trajectory.

Research highlights the importance of psychosocial care for managing pain, adherence to treatment, and overall quality of life. It is time to step up and truly address comprehensive cancer care which means addressing the WHOLE patient and their FAMILY MEMBERS.

Yet when you look at the White House fact sheet (https://www.whitehouse.gov/the-press-office/2016/02/01/fact-sheet-investing-national-cancer-moonshot) for the Cancer Moonshot initiative, look at what is glaringly missing..... Psychosocial Research and Care. 

The idea that a concerted government push can lead to a “cure” for cancer is nearly a half century old, stretching back to President Nixon’s failed “War on Cancer.” The chances of reaching a moment of victory as the analogy “moonshot” suggests seem entirely unrealistic.

“This is not about getting to one point in a certain period of time,” said Dr. Harold Varmus, a Nobel laureate and former director of the National Cancer Institute. Unlike in 1971, when President Nixon launched his cancer war, researchers now understand that cancer is not one disease but essentially hundreds. The very notion of a single cure — or as Mr. Obama put it, making “America the country that cures cancer once and for all” — is misleading and outdated (NYT article:

http://www.nytimes.com/2016/01/14/health/moonshot-to-cure-cancer-to-be-led-by-biden-relies-on-outmoded-view-of-disease.html?action=click&contentCollection=Politics&module=RelatedCoverage&region=Marginalia&pgtype=article).


$1 Billion Planned for Cancer Moonshot:

http://www.nytimes.com/2016/02/02/us/politics/dollar1-billion-planned-for-cancer-moonshot.html?_r=2

Monday, February 1, 2016

Monday, February 1, 2016

Tonight's picture was taken on February 4, 2016. This was a typical physical therapy scene with Mattie. Just like him, it wasn't boring. In order to inspire Mattie to participate in physical therapy, it took a team of us to motivate him. Walking even a couple of steps was exhausting and painful. After all, Mattie wasn't just rehabilitating, he was recovering from limb salvaging surgery (in which three limbs were replaced with prosthetics) and Mattie was still undergoing chemotherapy. As you can see, Mattie had Anna (his physical therapist) pushing his IV pole, and behind him were Jessie (one of Mattie's art therapists) and Linda (Mattie's child life specialist). Notice all the colorful plastic cones attached by a string to Mattie's walker. All designed by Mattie!


Quote of the day: Closed eyes, heart not beating, but a living love. ~ Avis Corea

Today was a warmer day, but grey, rainy, and rather depressing. The highlight of my day was meeting my friend Dawnee for lunch. We were celebrating her birthday, which occurred last week during the blizzard.

Dawnee is another friend I made thanks to Mattie. In 2004, we submitted a preschool application to the Resurrection Children's Center. Dawnee was the assistant director of the school at the time and that was the first time we met one another. Then life got busy and complicated with Mattie's illness and we lost track of one another. Fast forward to 2013, I was planning a birthday party for another friend and I invited Dawnee to the party. That birthday lunch reconnected us.

Dawnee introduced me to this restaurant in Falls Church, VA and Peter actually took me to it for my birthday last year. I enjoyed it so much that I decided this would be the perfect spot for today. No matter what the weather is outside, this restaurant has floor to ceiling windows which seem to make even a grey day brighter!   

Sunday, January 31, 2016

Sunday, January 31, 2016

Tonight I am posting two photos because of the nature of what I am writing about below. I figured seeing the actual photos before they were transformed would be helpful! 

The photo of Mattie and me was taken on February 14, 2009. The last Valentine's Day we celebrated together. Mattie was in the hospital and worked with his art therapists to surprise me with all sorts of gifts. I was banned from the child life playroom for quite some time and then called back in when Mattie was finished. Mattie gave me this hand cut heart paper crown and a box filled with valentine's. I naturally saved all these items. Mattie's art therapist captured this moment in time. 

This photo of Mattie and Peter was taken around Peter's birthday in November 2008. The last birthday Peter celebrated with Mattie. Mattie was scheduled to have his second limb salvaging surgery the day before Peter's birthday, so we decided to celebrate Peter's birthday early. Mattie was adamant that he wanted to create something for Peter and when we asked him what... he said a birthday cake. But one out of model magic. So he designed it and colored it. When he gave it to Peter, I snapped a photo of them together. It is one of my favorites of them together. This cake sits on the bureau in our bedroom. 




Quote of the day: Sometimes, when one person is absent, the whole world seems depopulated. ~ Allphonse de Lamartine

Our facebook friend, Timothy Beck created several creations for us today! The photo you saw of Mattie and Peter above was transposed onto this cherry. 

This was Mattie and I on Valentine's Day. What I love about this photo is the close up of us. It shows what Mattie did with me always which was to touch noses and stare into my eyes! Though the photo above is of the same subject matter, this close up to me captures the emotions of the moment. 

Tim and I had been writing back and forth on Facebook today and I suggested Valentine's Day themed creations. He sent me several heart templates to choose from, and this was one of the one's I selected. I like this template because of the wood. Mattie loved trees and I remember on almost every walk we took with him, he brought home a branch. 

I just love this whole composition and told Tim that..... These are OUR colors... red and orange and it seems like the perfect symbol of my life now without Mattie. I hold the memories we had together tightly in my hands. 

Tim viewed this creation that he did as a reject because of the open heart cutting off part of me. However, despite the fact that I am cut off, I like what this creation symbolizes.... a parent with an incomplete or hollow heart.

Saturday, January 30, 2016

Saturday, January 30, 2016

Tonight's picture was taken on February 4, 2009. Anna, Mattie's physical therapist, came up to the pediatric unit to give him physical therapy. Mattie was truly disgusted with our request for him to do this, so in order to inspire him, Anna and I decided to turn the shoe on the other foot. We said that Mattie could make us exercise, but then we wanted him to join in. He seemed to like that idea a lot. Anna and I got down on the floor and did a physical therapy twister. Mattie was calling the shots and LOVED it! Anna and I practically did just about anything to get Mattie to participate in physical therapy, because at the time we thought after treatment Mattie would have the chance to rehabilitate and regain his strength. 


Quote of the day: The whole world can become the enemy when you lose what you love. ~ Kristina McMorris


Peter and I were invited to an open house today at Sinai Hospital in Baltimore.
Dr. Aziza Shad, who once ran the pediatric HEM/ONC program at Georgetown University Hospital is now the Chief of Pediatrics at Sinai. How do we know Aziza? After all she wasn't Mattie's oncologist. It turns out that Aziza is the doctor who assisted us when Mattie was dying. She was with us on this journey until the end and made the tough but RIGHT call to give Mattie propofol to induce a coma. Basically to assist in his horrific dying process. These are moments and care you never forget. Aziza was also the person who encouraged me to have Mattie die in the hospital rather than at home. Ultimately Mattie is the one who made the decision and HE CHOSE the hospital. But Aziza was 100% correct, we needed a hospital not just for treatment but for end of life care. There is no way any of us or hospice could have handled Mattie at the end of his life. We needed extreme measures and a trained hospital staff on hand. Of course this was not just any staff, these were professional we had come to know, trust, and respect over the course of 14 months. 

Aziza held an open house today for many of her Georgetown supporters at Sinai Hospital. This open house was lovely. It wasn't staged or programmed but truly warm and inviting, which enabled us all to interact with one another and share ideas about what we could bring to Sinai. Mind you, Peter and I knew most of the parents sitting around the table today, so it was like a mini reunion. 

One of the issues we surfaced at the gathering was the Psychosocial Standards of Care and how we can bring these standards to Sinai. What impressed us was the doctors and administrators were interested in our work and truly understood the importance of family center care, which includes psychosocial care for the patient and the family. I wasn't necessarily going to bring this up at the meeting, but literally Aziza asked me in a room full of people... "Vicki what are your thoughts?" Meaning did I have something to say. She did not do this with anyone else, so I greatly appreciated her vote of confidence and belief in what amazing work we just accomplished with getting the standards published in a top tier medical journal. 

We had the opportunity to have a tour of the outpatient clinic and inpatient pediatric unit at Sinai. This is a typical patient room. It was designed with the family in mind and the spaciousness, cleanliness, and brightness caught my attention immediately!

This was one of their family lounges on the pediatric inpatient unit. 

What I fell in love with was this space..... The child life playroom! It was so inviting, bright, and engaging. 

The hospital has 26 patient rooms and has 3 child life specialists, which is EXCELLENT!

After our tour, we got together with Aziza Shad (in the center in red) for a photo with all our Georgetown friends (families with children treated at Georgetown). 

You may look at my arms and think they look funny. But what you can't see is that my left hand is wrapped around my body holding Marilyn's hand (who was standing behind me). I met Marilyn very early on in Mattie's treatment process. She is a nurse by training, and her daughter is a cancer survivor. She came by one day on the pediatric floor to talk with me. She had tried other times, but I wouldn't engage in conversation. That one day, she got a hold of me, and I appreciated being connected with her. We have remained friends ever since. In fact, in 2011 her daughter (a cancer survivor and now an art therapist at a children's hospital in Chicago) and her were our guest speakers at our annual Walk. 

Friday, January 29, 2016

Friday, January 29, 2016

Tonight's picture was taken on February 2, 2009. Mattie was in the clinic at Georgetown University Hospital and on that day his art therapists were telling us that they were creating a welcome plaque for the inpatient pediatric units at the hospital. They thought it would be great to get actual hand prints from the children on this plaque. So they asked Mattie if he would provide his hand print. Mattie was LESS than interested. However, when I suggested he provide his foot print, he was ALL FOR IT! I snapped a photo of Jenny and Jessie painting his foot and the actual result is down below. This plaque remains on display at the hospital and every time I visit the inpatient units, I get to see Mattie's footprint! Since the inpatient unit was so special to Mattie, and was like our second home to us, I appreciate seeing a part of Mattie remaining at the hospital (even though most people do not know that this footprint belonged to Mattie).


Quote of the day: It is the capacity to feel consuming grief and pain and despair that also allows me to embrace love and joy and beauty with my whole heart. I must let it all in. ~ Anna White


Recently Peter and I were contacted by a doctoral student in California who is working on a degree in psychology. She is also a certified child life specialist with over 11 years in that field. We get many requests from students, asking for help finding subjects for their studies. I ALWAYS help them, because I remember those days when I too was struggling to find subjects for my dissertation. 

However, while reading this woman's study description, and learning that her focus was on remembrance items used by bereaved parents, I took personal notice. I felt her research questions APPLIED to us directly and that Peter and I would have a lot to say on the matter. So I wrote back to her and told her that I would publicize her study but that I also wanted to participate.

Last weekend, during the blizzard, Peter and I spoke to the researcher on the phone. She interviewed me for 90 minutes and then Peter for another 60 minutes. She wanted to know about Mattie before cancer, Mattie throughout his cancer battle, and then we discussed legacy items and what they meant to us.

Both Peter and I have real issues with the phrase LEGACY items. Why? Soon after Mattie died, we went to a conference in Baltimore. One of the sessions was conducted by social workers and they discussed the importance of legacy work with their child patients and families. In many cases, these social workers had an opportunity to talk with the child about his/her pending death and together created items to be remembered. These items could be the children's wishes, what they wanted their parents to do after they were gone, how they wanted to be remembered, etc. Needless to say with Mattie we hadn't stopped treatment long before we determined he was dying. There was NO TIME to discuss his death, much less process this news. Frankly though creating legacy items may work for some children and families, I do not think it does for everyone. After hearing this conference presentation, we both left feeling very GUILTY. That we hadn't given Mattie a voice and that we did not work harder to secure his wishes. It was truly a conference session that put us in a funk and even to this day the notion of legacy items still makes us uneasy. It evokes that conference, the feeling we left with, and of course the reminder of what we did not do.  

This researcher understood our feelings, but what intrigued me was her study focused on legacy items we had..... hand and foot prints. She was particularly interested in hand/foot prints created as Mattie was dying. Yet as we talked for 90 minutes, a lot was revealed. Things I may have understood on a subconscious level, but had never had the opportunity to express to someone. 

When she asked about hand/foot prints created while Mattie was dying, I immediately thought of the RED BOXES underneath our dining room breakfront. What is in these boxes? The hand and foot prints created two hours after Mattie died, in his PICU room. I remember Mattie's child life specialist and art therapist placing Mattie's hands and feet in these clay blocks, but honestly I do not remember how they introduced this notion to me. The researcher wanted to know if they had a talk with us about legacy items and whether we desired to create these prints. I truthfully do not remember having such a conversation. Just that the prints happened. I believe this was probably the case because I had expressed to these women in passing that I was saddened that I never created a hand/foot print with Mattie when he was alive. So I really believe this was their reaction to my sentiments expressed on a different occasion. 

But the question maybe..... why are the prints in boxes and NOT displayed? My answer to such a question is that seeing these prints would not bring me joy or comfortable but instead great sadness. They were taken after watching Mattie go through five hours of torture before dying. There was not enough pain medication in the world to relieve Mattie's pain and he was basically drowning in his own fluids. Which was frightening to watch and hear! Mattie had trouble dying and the only way he finally did die was he was put into a coma with propofol and we sat with him while he flat lined. It was awful and therefore these prints remind me of that night/morning. Yet I can't throw the prints away. It gives me some sort of peace knowing they are there and we did them, but I don't want to see them. 

Then we have this hand print which is on display in our living room. This print was taken by a friend of mine the night before Mattie died. Mattie was not cognitively aware of the fact that this print was being taken of him. My friend did the print and Peter and I watched. The researcher asked me how I felt about this print and my reaction, which surprised me was.... NOT good. I do have it on display because my friend and Mattie's art teacher worked hard (to clean it up and paint it) on it. But honestly it too reminds me of a painful scene and it isn't a meaningful  representation of Mattie because he wasn't actively engaged in its production. Part of the joy I had while Mattie was at the hospital was that I could SEE him create things. I could hear his discussion about his projects and observed how he played with them. This wasn't the case with this hand print, and in a way the true spirit of Mattie is not reflected in this piece. 

So I tried to encourage the researcher to understand that legacy pieces really need to be made when the child is battling cancer and BEFORE one learns of the terminal status. Pieces that Mattie made during his cancer battle, I happen to LOVE! They remind me of him and they are items I do reflect on. ALL HIS ART PIECES are Mattie's true legacy. 

This hand and foot print, I absolutely forgot about, until Peter mentioned them to me. Naturally I see them everyday, since they sit on an Italian music box that houses Mattie's ashes. Yet when the researcher asked me about his hand and foot prints, these models did not come to mind. Even worse I can't remember when or how we created these items together! 

Lastly we have this footprint. I described this plaque in the beginning of tonight's blog. Seeing this footprint does make me smile, and I believe it does because of how it was created. I can picture that moment in the clinic and the fun Mattie was having as his foot was being painted. That fun, laughter, and spirit was Mattie. 

I realize we were helping this researcher obtain data for her study, but I found it helpful too. Mainly because it is rare to have someone just talk about Mattie, our feelings around his death and the objects that surround us. It wasn't like I did not know how I felt, but it was good to verbalize them and to be able to use our insights to help future families. The one thing Peter and I both mentioned in our conversations (and mind you we did not chat with each other about our thoughts prior to the call) is that psychosocial professionals need to alert parents who just lost a child that how they feel at that exact moment may not be how they feel months or years from now with regard to creating a hand/foot print. I don't particularly find the hand/foot print helpful, yet I am glad I have it because I can't say it wasn't done. I may not have been able to say that years ago, but I can say that now. So talking about time and legacy items with family members is crucial and our second point was it matters WHO has this legacy item conversation with family members. It can't be someone on the periphery of care, but instead a professional who was very involved with the child and family, and who is trusted. 

Thursday, January 28, 2016

Thursday, January 28, 2016

Tonight's picture was taken in February of 2004. Mattie was almost two years old and out for a weekend adventure with us. Mattie preferred being outdoors, and it did not matter the temperature or time of year. He never articulated with me while he liked being with nature, but he seemed happier and more at peace there. Early on in Mattie's life he contended with sensory issues, specifically focused on sound, smells, textures, and most definitely people coming into his personal space. Being outside, many of these sensory issues weren't an issue. So despite the fact that I am always cold, I learned to adapt in order to give Mattie the things he needed to develop. 



Quote of the day: Here is one of the worst things about having someone you love die: It happens again every single morning. ~ Anna Quindlen

Yesterday my friend Christine sent me several photos by email. She has been organizing her photos and placing them into albums and she wanted me to know that Mattie was remembered in these albums. 

Mattie and Christine's son, Campbell, were the closest of friends in kindergarten. The wonderful part about all of this is Christine and I also liked each other and became friends. So it was wonderful that the boys just gravitated to one another. 

I thought I saw every possible photo of Mattie, but I have NEVER seen these two. They are total surprises to me and I can't even figure out where Mattie was and what he was doing. I know he was on a playdate with Campbell and I assume it was at Campbell's home. But I love the karate like chop that Christine caught on camera!

It is a wonderful gift when someone out of the blue shares memories like this me. It helps me see that perhaps Mattie has touched more people than just Peter and I, and someone else is helping me actively keep his memory alive. 

This photo was taken at the Accotink Cardboard Boat Regatta in Springfield, VA. This event happens every June. Mattie went with us, and his friend Campbell and his sister. We all had a great time and our thinking was one day Mattie and Peter would build a cardboard boat together. 

This photo was taken in the child life playroom at the hospital. We were celebrating Mattie's 7th birthday. His last birthday with us. He was surrounded by his closest friends: Campbell, Livi (Campbell's sister), Charlotte (who Mattie called his girlfriend), Brandon (Mattie's best buddy at Georgetown, as they battled cancer together), Zachary and Abbie (both of whom Mattie met in preschool).

A close up of Mattie and Campbell. Campbell is the fellow with his head down, covered in silly string.

This photo was taken at Campbell's sixth birthday party! Mattie was having a great time that day with sprinklers, a moon bounce, and time with his friends.