Saturday, October 24, 2015

Saturday, October 24, 2015

Tonight's picture was taken on October 23, 2007. We took Mattie to a fall festival that day and he was doing one of his favorite activities there.... going down long slides on a piece of cloth. The irony is when Mattie first saw these slides two years before, he was scared of them. It took great coaxing and to go down them on Peter's lap for Mattie to appreciate the thrill. However, once Mattie got the gist of it, he loved it and wanted to do it himself. Despite his independence, Peter was always at the top of the hill and I was always at the bottom of the hill to keep a close eye on Mattie. As Mattie's parent, I tried to be proactive and think ahead of all the possible things that could wrong and to try to mitigate them. Childhood cancer however, was never on my list until it happened. 


Quote of the day: I wanted a perfect ending. Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. ~ Gilda Radner

Peter and I went to visit Mattie's memorial tree at his school today. Our goal was to take down the big yellow bow with sunflowers that we tied around the tree in honor of Mattie's 6th anniversary of his death and replace it with a Fall themed bow. As you can see this bow would not be complete without a spider attached to it. Mattie loved all sorts of creepy crawlers, so we know he would have appreciated this unique addition. 

At Mattie's upper school today, there was a National Junior Classical League Kick Off Certamen. Certamen is Latin for "competition," and it is a quiz bowl-style competition with classics-themed questions. The teams participated in our 5th Annual Candy Drive by donating candy today at their event. 

In this photo are two members of the St. Stephen's and St. Agnes School upper level Latin Team. The young lady with the red hair, Ann Bailey, is a long time volunteer for Mattie Miracle and as you can see helped us collect two big tubs of candy today! 

This is a new one for us! Typically the candy comes rolling in after Halloween, but this year it is occurring a week before! We love to see the energy and enthusiasm our community has for the Candy Drive. 

Friday, October 23, 2015

Friday, October 23, 2015

Tonight's picture was taken on October 7, 2007. We took Mattie to a park along the Potomac River that Sunday afternoon. Peter brought a soccer ball with us to help Mattie learn some skills. Of course in tow, I brought a picnic filled with all sorts of Mattie items. It was a gloriously warm October day, we were altogether and we really did not have a major worry in the world. Who would have known that a year later we would be battling childhood cancer. 


Quote of the day: At some of the darkest moments in my life, some people I thought of as friends deserted me -- some because they cared about me and it hurt them to see me in pain; others because I reminded them of their own vulnerability, and that was more than they could handle. But real friends overcame their discomfort and came to sit with me. If they had not words to make me feel better, they sat in silence (much better than saying, "You'll get over it," or "It's not so bad; others have it worse") and I loved them for it. ~ Harold Kushner


As my friend's husband is planning her funeral, I reflected today on what it was like for Peter and I to walk through the doors of a funeral home when we had to make decisions about what to do with Mattie's body. As I told my friend, this is a surreal experience. It isn't like you dissociate from what is going on, but I would say you are consciously aware of the fact that your body is in a funeral home and you are talking and making decisions, and yet on an emotional level you are just not there. Almost as if a part of you is watching a TV movie, and you are the observer not the participant. It is classic shock and though we all may have heard and use the term shock, it is another thing to be living with it. 

We fortunately decided to cremate Mattie, because we needed time to plan his funeral. Typically in the Catholic religion funerals happen within three or so days after a death. However, we were in no condition to plan a funeral or even attend one. So we waited a month. Mattie died on September 8 and his funeral was on October 10, 2009. However, before Mattie's body could be cremated, we had to discuss the kind of metals in his body. After all he had three prosthetic limbs and metal pieces that were implanted in his body for cyberknife. I still remember this discussion and I also remember receiving ALL of these metal pieces back in a bag after Mattie was cremated. The metal pieces looked horrifying actually and it was hard to imagine them in a child's body. 

Overall however, I do not like attending funerals. I did not have this problem before Mattie died, but now I most definitely do. In fact, I won't attend a funeral unless actually asked to be there. From my perspective a funeral (though I am sure every grief and loss expert would disagree with me) is not about the person who died. That person is gone and there is no amount of praying, hoping, and so forth that is going to bring that person back or is it the time to change the dynamics of a relationship. A funeral is for the living, and if those who are alive request your presence, then it probably is important that you go, and find the strength and stamina to attend.  

My long time friend Mary Ann sent me several amazing photos today. This one shows the glorious colors of Fall. To me they highlight many Mattie Miracle colors! As I told Mary Ann, she keeps me oriented to the seasons and am always grateful for her photos that she shares with me. 

Mary Ann sent me a photo of this white rose she came across today on her walk. The rose is in memory of Janet.

Also no walk would be complete without checking in on Margaret's bush. Mary Ann and I call it Margaret's bush because when my friend Margaret died last June, Mary Ann sent me a photo of this rose bush in her memory (since Margaret was a rose lover). Now Mary Ann, captures photos of these roses during every season and shares it with me. It is one of the ways Mary Ann helps me keep Margaret's memory alive. 

Thursday, October 22, 2015

Thursday, October 22, 2015

Tonight's picture was taken in October of 2007. This was one of our favorite things to do, going to Butler's Orchard and taking a hayride to the pumpkin patch. I am not sure what Mattie loved more. The hayride, pulling a wheelbarrow with Peter as we collected pumpkins, or picking pumpkins from the actual pumpkin patch. 



Quote of the day: We understand death only after it has placed its hands on someone we love. ~ Anne L. de Stael

This morning, I learned that my friend took a turn for the worse, and started the death rattle. The death rattle, or terminal secretions, is a sound often produced by someone who is near death when fluids such as saliva and bronchial 
secretions accumulate in the throat and upper chest. This description doesn't do the sound justice because it has to be one of the worst and most terrifying sounds I have ever heard. Mattie experienced this and to me it was watching hell on earth. In addition to this gurgling and choking sound, which sounds deep and reverberates everywhere, there is usually agitation that comes along with it. Not everyone who dies experiences the death rattle, but when it is happening I have learned that death is imminent. Of course no one really prepares you for this, or warns family members... but I have learned through experience. Therefore I knew my friend was dying today or tomorrow. 

I remember after Mattie died, our oncologist assured me that Mattie wasn't in pain throughout the death rattle. That this symptom bothers caregivers more than the patient because noisy breathing occurs at a time when the dying person is unaware of it. It is truly hard to accept that the death rattle does not cause discomfort for the dying person. Mainly because when you watch someone experiencing it, it seems like they are struggling for air. I have read this fact too, and to some extent loved ones need to accept this notion because the alternative is continual disillusionment about not being able to prevent this horrific pain. 

My friend and I met in preschool. Her daughter, who is an only child, and Mattie were in the same class together. Helping this family while my friend was still alive seemed a lot easier because there were tasks that needed to get done. However, today what I realized is this family went from being a threesome to now being a twosome. Just like me on September 8, 2009 (the day Mattie died). In addition, I am a mom who lost her child, and my friend's daughter is a child who lost her mom. This whole notion was truly overwhelming today and I could have easily walked away to protect myself and my feelings. But I did not. 

I will never forget September 8, 2009, or the feeling of us packing up Mattie's hospital room for the last time and leaving in our car from the hospital. That vision lives inside of me always. Because even in that moment, I had the where with all to know our lives as individuals and as a couple had permanently  changed. But one thing I learned about grief is that you have to define it for yourself. If you aren't ready to feel something, then you shouldn't and that helping someone through grief do mean talking about what happened and memories of the loved one. Reflecting on happy memories is important and it does happen in time, but it doesn't happen right away because of the trauma experienced. One really needs to work through memories of the illness and the death. As I told this family today, facing grief and trying to cope with it is truly accomplished when you are surrounded by people you deem as safe. Because even while performing everyday tasks, if you are around people you trust and these people understand that any and all emotions are normal, then learning to face the reality of one's loss and the pain associated with become possible. 

Wednesday, October 21, 2015

Wednesday, October 21, 2015

Tonight's picture was taken in October of 2007. That weekend we took Mattie to one of his favorite restaurants in Maryland. What he loved so much about that restaurant was the fact that it had a pond with fish and turtles in front of it. 




Quote of the day: Miraculously recover or die. That's the extent of our cultural bandwidth for chronic illness. ~  S. Kelley Harrell


I always thought that Mattie's preschool was special. Mattie entered preschool in 2005. So that is ten years ago. Yet many of the moms I know and connect with today are from that school. These women helped us during Mattie's battle with cancer and now six years after his death, these same women volunteer for the Foundation. When Mattie was ill, I was focused on him and was not involved in the coordination of who brought us meals and gifts. I don't mean an occasional meal or two, I mean lunch and dinner for over a year, and gifts for Mattie practically daily. 

This week, I have established a helper list for my friend who is dying from cancer. Naturally I reached out to my preschool mom friends to ask for help for meals, running errands, and other family support. In a world in which most people have the attention span of a text message, it is comforting to know that there are those out there who understand the magnitude of illness and the impact it has on a family. Yet again these preschool moms are banding together to offer help and will practically drop things to make requests happen. To me this is blog worthy because I found with Mattie, through the worst of tragedies, you discover certain beautiful things around you that you may have taken for granted before. Or that you did not even know existed! People helping people, always gets my attention and utmost respect. 

Today I went to Mattie's school with my friend Margy to visit the memorial tree. Margy is a new friend of mine that I met through Facebook. Typically I do not meet friends on Facebook, but we have many mutual friends in common and we are both united around childhood cancer. Margy was a play therapist for many years helping children with cancer and their families, and is still very active in non-profit work. 

Margy asked to see Mattie's tree, so we met at school on this beautiful 70 degree day. While there, it was recess time and kindergarteners were running around everywhere. We even got to talk to Donna (the teacher I visit each spring to do my three part art series for her students) and Leslie (Mattie's kindergarten teacher). I very much appreciate Donna giving me the opportunity every year to interact with her students, because this is really the only contact with children I now have, and she knows that is important to me. However, seeing many happy children running around today did make me pause. For me, Mattie will always be a kindergartener, so I can't help but reflect on him on this playground.  

Margy placed this beautiful orange stone under Mattie's tree in honor of his life. Needless to say, each time we visit the tree, I will be looking for this stone. 

Margy brought the stone because she learned of the tradition of leaving a stone at a grave from one of her patient's families, who practices Judaism. There are many explanations for why visitors leave stones at a grave or memorial, but the one that I like best is that.... flowers, though beautiful, will eventually die. A stone will not die, and can symbolize the permanence of memory and legacy.

When I arrived home this afternoon from my time with Margy, I found these flowers sitting on my doorstep. My friends Denise and Dave sent them to me, just because. That to me is the nicest way to receive flowers, for no particular occasion.

Denise knows I LOVE sunflowers and how they symbolize hope, community, and compassion to me. They do because when Mattie was battling cancer, our care community always gave me bunches of sunflowers when we were home between treatments. I fell in love with the sunflower back then because to me it captured such important sentiments and feelings and added brightness into our incredibly dark world. Sunflowers can bring me right back to 2008-2009, and though that was an incredibly painful time, it also showed me the beauty of people uniting together to help my special six year old battle cancer.  

Tuesday, October 20, 2015

Tuesday, October 20, 2015 -- Mattie died 318 weeks ago today.

Tonight's picture was taken in October of 2007. Mattie was in kindergarten at this point, yet his preschool friend, John, invited Mattie to his Halloween party! As you can see, Mattie was in the lower right hand corner of this photo holding a roll of toilet paper. Myself and another mom, were being wrapped as mummies by the kids. Clearly it was a happy and memorable moment.  



Quote of the day: Sometimes your joy is the source of your smile, but sometimes your smile can be the source of your joy. ~  Thich Nhat Hanh 


A smile can be the source of joy! When I saw this quote today, it resonated with me. Today I went to visit my friend who is dying of cancer. I met this mom at Mattie's preschool in 2006, since our children were in the same classroom together. When you are sitting with someone who is so gravely ill, but they look up at you and give you a smile, I would say this captures your attention. 

I am always in amazement being in the presence of someone who is dying. First of all, my experience is they know they are going to die even before they are told about their condition, and of course before their loved ones can process and accept the news. You may think based on how TV and the movies portray people on their death beds, that this is an hysterical time. That people are crying, the person who is dying is inconsolable and that there is a great dialogue about the future and how the dying person wants loved ones to live their life without them! NONE OF THIS truly happens, unless you are a part of a soap opera. 

When caring for someone who is dying, you are trying to manage the minute by minute tasks and care associated with this life altering situation. There is really very little time or ENERGY to be doing higher order functions like thinking, reflecting, and being in touch with the feelings associated with the pending death. I also think this is the way our minds protect us because if we were absorbed in the emotions, fears, and reality in front of us, I know that it would be impossible to fulfill the role of caregiver, much less care for ourselves. 

With that said, I also know that death doesn't look the same for everyone. For some being on pain medications enables them to look restful and at peace, and then you have situations like Mattie in which no amount of drugs were going to relieve his pain or help him breathe. I attended one conference session a while back and the topic was legacy planning. Legacy planning involves families or social workers working with the patient who is dying and capturing thoughts about how they want to be remembered. The conference session I was in was detailed and showed us examples with memories and wishes captured in notebooks and through pictures. In a way having such a keepsake enables families to remain connected to their loved one, but also they know what their loved one's wishes and desires were for them. 

All I know is since 2009, I have assisted four people die, and in each case, I couldn't possibly see where legacy planning fits in. Whether a child or adult, families want to fight for the lives of their loved one and sitting back and trying to do legacy planning is counter intuitive. I do know that sitting through the legacy session at the conference made me feel sick, as did Peter. I came away from it not uplifted but instead that I failed Mattie. That I hadn't captured his wishes toward the future, that I did not do legacy planning and therefore felt guilty. 

There are resources out there to help guide such legacy conversations, but frankly in my perspective, whem helping patients and caregivers with death, you have to come into the process without an agenda. The agenda has to be run by the family and the patient. I know that Peter and I followed Mattie's lead about his desire to die at the hospital and his wishes to be surrounded by those he knew at the hospital. At the end of the day, these memories are part of Mattie's legacy. He had the where with all and insights to know his situation and advocate for his health care! For which I will always be proud of him. 

Monday, October 19, 2015

Monday, October 19, 2015

Tonight's picture was taken in October of 2008. Mattie was sitting next to Debbie, his art teacher from school. Debbie and Mattie always got along splendidly! She understood Mattie. I will never forget the commentary she wrote to us about Mattie half way into his first semester. Debbie basically described Mattie as an "old soul." She said other things, but the old soul comment caught my attention, because to me that is a high compliment. Mattie loved art and as you can see as Debbie was teaching, Mattie was listening and creating. He produced many beautiful things in kindergarten with Debbie, but he also produced Mr. Sun, the huge painting in our dining room. Mr. Sun was created when Mattie was battling cancer. It is a stunning painting and it was from that painting that we created the Mattie Miracle sun logo.


Quote of the day: The next time you want to withhold your help, or your love, or your support for another for whatever the reason, ask yourself a simple question: do the reasons you want to withhold it reflect more on them or on you? And which reasons do you want defining you forevermore? ~ Dan Pearce


The highlight of our day was finding out that two more organizations have endorsed our National Psychosocial Standards of Care for Children with Cancer and Their Families. The first is the American Psychosocial Oncology Society (APOS) and the second is the Society of Pediatric Psychologists (SPP, Division 54 of the American Psychological Association). 

APOS has been instrumental in the development of the Standards, since Mattie Miracle funded two think tanks at their national conferences. It was within these think tanks that health care professionals from around the Country, Canada, and the Netherlands got together to launch the three year long Standards research project. A project which resulted in the creation of 15 evidence based Standards that will be published in a supplemental edition of Pediatric Blood & Cancer (a top tier, peer reviewed medical journal) next month. 

Therefore, I am proud to say that the Standards are endorsed by the following three major organizations (and more are on their way!):

1) Association of Pediatric Hematology/Oncology Nurses
2) American Psychosocial Oncology Society
3) Society of Pediatric Psychology

This may not sound tremendous, but in all reality this is an historic occasion. It all began in March of 2012, when Peter and I went out on a limb and decided to host a symposium at the Capitol Hill Visitors Center to address the importance of psychosocial care by discussing cutting edge psychosocial research and hearing from parents of survivors and parents whose children lost their battle. It was at this event that we expressed our vision to have a psychosocial standard of care developed. We did not know what that standard would look like, but we felt it was vital that every child and family member have access to a minimum level of psychosocial support no matter where they were treated in the Country.

At that symposium we had key mental health researchers and clinicians serve on the scientific panel. These leaders shared our vision and after the event was over one of the leaders (Dr. Lori Wiener) reached out to me to have us consider sponsoring a think tank at the APOS national conference. A think tank that would convene health care professionals together from multiple disciplines to brainstorm this huge task and goal.  

Lori, along with our other core leaders (Mary Jo Kupst, Anne Kazak, Bob Noll, and Andrea Patenaude) assembled a team of over 60 professionals to work on the development of Standards. This was a three year long project, and what you need to understand is that... NO ONE WAS COMPENSATED for their work! Imagine asking over 60 people anywhere to work together, do tedious work, writing, evaluating, monthly phone calls, and so forth! This is unheard of! When you think of this, it really is quite a feat and worthy of an article! But it speaks to the commitment of this team and their passion and love for their profession and the individuals they serve (children with cancer and their families). These professionals share our vision, that psychosocial care is just as important as the medicine and it must be included in effective comprehensive cancer care. 

Psychosocial care is not an adjunct service or simply a nice to have. It is vital for the effectiveness of the medical treatment. It is well known that psychosocial care mitigates symptoms, pain, and enhances adherence to medical treatment. In addition, psychosocial care improves the quality of life for children and their families. The medical treatment for cancer has consequences for patients, and unfortunately the psychosocial issues do not end when the treatment does. 

The development of the Standards was a huge undertaking, as the standards are the result of the largest and most comprehensive psychosocial review of the literature to date. Seeing these Standards being endorsed by major professional organizations brings great happiness to all of us involved in this project, because what this signifies is not only the importance of their development, but the acknowledgment that they were developed systematically, following a rigorous scientific process. 

Sunday, October 18, 2015

Sunday, October 18, 2015

Tonight's picture was taken on October 17, 2008. This was NOT an pre-arranged photo! It was rather spontaneous. I took Mattie to the track of his upper school campus to meet his friend Charlotte. While there, we ran into Coach Dave (an avid Mattie supporter), who was at practice with his football team. As you can see the whole team stopped practice to snap a photo with Mattie! During Mattie's year long battle the football team did many things in honor of Mattie. They did a Mattie cheer before games, they gave him a signed football, and a big poster of this photo with all their signatures on it! 


Quote of the day: Have patience with all things, but chiefly have patience with yourself. Do not lose courage in considering your own imperfections but instantly set about remedying them -- every day begin the task anew. ~ Saint Francis de Sales

Peter is back home from his trip to Boston. Not a day too soon either, because tonight will be our first frost! Which means that all our green friends who winter indoors, have to be carried inside. So our living room is back to looking like a jungle. What is remarkable are the two trees on the right and left in this photo. They were given to me in September 2009, right after Mattie died. When I received them, they were small plants. Not even up to my knees. Now look at them! The rubber fig tree on the right is almost 8 foot tall and practically touching the ceiling! 


For those of you who spend any significant amount of time on Facebook, what I am telling you probably won't come as a surprise. Facebook for the most part is filled with (putting news feeds aside), parent updates about children -- their daily happenings, milestones, events they attend and so forth. In all reality it makes it easier for people to connect and get updates about each other in our very frenetic all too busy world that we live in. Yet what happens to those of us who have lost our children? Certainly there is the cancer community that is also present on Facebook and for some this is a very helpful outlet. However, what I find is I do not relate to either group (the healthy or the cancer community) on Facebook. 

Certainly being bombarded with happy photos of intact families minute by minute can send me right over the edge on any given day. I am truly happy for my friends who have healthy children, but I wouldn't be human if I did not stop and pause and wonder why I am not one of those lucky ones? When these feelings overwhelm me, I know that means I need to back away from the computer. 

One of the things I watched on PBS today was a special called, Mary Tyler Moore: Celebration. It featured Mary Tyler Moore's career and insight into her personal life. I did not know her only child shot himself to death, nor did I know the subject matter of the movie, Ordinary People. A movie which reinvigorated her career after the Mary Tyler Moore show ended. Ordinary People, in a way mimicked her own life, since it is about the death of one of her sons and how this fragmented the lives of all those who remained in her family. Yet in real life, her son shot himself after the movie was filmed, and I just wonder what her performance would have been like, if the opposite had occurred. If her son died before the movie was created.... my hunch is it would have been a lot harder to act her part or she would have had personal insights that would have impacted her role. 

The one hour special, Mary Tyler Moore: Celebration, can be watched here if you are interested: 
http://video.pbs.org/video/2365572188/