Mattie Miracle 8th Annual Walk & Family Festival was an $88,000 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

Random Shots of Mattie, Family and Friends

April 26, 2013

Friday, April 26, 2013

Friday, April 26, 2013

Tonight's picture was taken in April of 2007. This photo had me cracking up for two reasons, the first is that Mattie was wearing a Christmas sweater in April and the second was Mattie's smile. This particular Mattie smile was one of annoyance. He wasn't happy with my desire to take a photo, so he gave me one of his "false" smiles. I remember that smile well. Mattie loved decorating our living room window, and in fact if you could see our window now, you would see some of Mattie's decorations still remain where he left them.


Quote of the day: My bones are tired from all the tragedy in me. ~ Peter Krause


Peter and I headed today to Baltimore to attend a palliative care conference. We were invited to present on a parent panel and the moderator was a social worker who we have worked with before. In fact, Kristen was one of the moderators of the very first panel we served on in November of 2011 at the DC Palliative Care Conference. Since that time, we have worked with Kristen when she served as one of our moderators at the Mattie Miracle Psychosocial Symposium we held on Capitol Hill in March of 2012. Kristen is also a blog reader, so we remain connected even when we do not see each other.

I think panels can be tricky things because from my perspective a panel is only as good as its members. Sometimes the members just click, relate to each other, and can build upon each other's stories. When this happens, it is like magic in which a painful topic comes alive and better yet as a parent who lost a child to cancer, it helps me feel empowered, understood, and not alone. 

We served on a panel today with three other families. As is typical, Peter and I were the only pair who lost an only child. Frankly, I am ready to write a book on the experiences of parents who lose an only child, because there are major differences in the grieving process. I usually know we stand out on most panels since we had an only child, but today the feeling was even more pronounced. When Peter and I lost Mattie, we instantly lost the role and title of parent. This is a loss that only a parent who has ONE child can truly understand. But I think what surprised me the most today, was a question one of the other moms on the panel posed to me. She asked me privately, not in front of an audience, yet nonetheless it clouded the rest of my day. She asked me if I thought about having other children. Not that this is a bad question per se, but I do think it is an inappropriate question considering we do not know each other. I sometimes also hope that bereaved parents have the sensitivity and/or insight to understand that a child who dies can't be replaced.

After this dialogue, it affected my mood. Then I heard a presentation given by two Child Life specialists. As my faithful readers know, I have great respect and admiration for Child Life. But this presentation rubbed me the wrong way, in fact, Peter got up and left the room.  However, I remained to listen. As I say to health care professionals all the time, there is one thing to clinically understand an issue and to work in that arena and yet quite another to have the LIVED experience. When you present as if you are going through the motions and talk in a check list format, not only do I think you lose your audience, but as a parent of a child who had cancer, I find the content meaningless. Within their presentation they also used my least favorite term of all times.............. NEW NORMAL!!!! As soon as I heard this offensive terminology, I began shaking my head. I almost want to go around the Country and lecture each and every person who uses this insensitive term, a term that makes sense in theory, but DEFINITELY doesn't work when LIVING through childhood cancer! There is NOTHING NEW or NORMAL to having your child diagnosed with cancer.

Thankfully Peter was on today and where I couldn't connect and step in, he did throughout the presentation. I could also tell the audience was tired (after all they had been in the room since 8am and our presentation was the last thing of the day) and I am sensitive to the energy of those around me. As the panel discussion was concluding, Kristen asked if we had any final thoughts. I shared two. First, I said that social workers, nurses, and child life specialists should feel empowered to guide their families to switch oncologists when the match isn't right for the family. I truly believe if I received that guidance and support, I would have replaced our oncologist much earlier in Mattie's care. Mattie's first oncologist caused great disagreement and at times arguments between Peter and I. We truly did not need this strife or additional stress. The second point relates to the first. On the day that Mattie died in the hospital, a spontaneous wake formed in Mattie's room. The group in attendance was composed of my parents, Brandon (Mattie's big buddy), and all of Mattie's Georgetown family. This was a miraculous experience in a way, until Mattie's first oncologist entered the room. My dad turned to this doctor and asked him what he learned from Mattie's case. After all, Mattie had a very rare form of osteosarcoma. Do you want to know how this doctor answered my father?! The doctor said he learned NOTHING from Mattie's case! So my message to the audience today was WORDS ARE POWERFUL. They remain with us always, even when the treatment is long gone. The devastation of words and how these words make us feel can either make us feel like we have been cut by a knife or supported and swaddled in a blanket. It is sad, but not surprising, that this doctor was true to form...... which was self focused and self serving even during such a solemn and heartbreaking moment in time.

Peter and I also attended a session at the conference today about legacy building. Quite frankly I did not even know what legacy building was or entailed. Kristen conducted this presentation and I learned how she has helped many children and their families build memories and a legacy for the child. In essence with legacy building, input and guidance are sought from the child. The child may have wishes on how to be memorialized and remembered. For example, one child helped to design her memorial cards and another created a list of friends who would get her stuffed animals. As I was listening to this, I realized I have absolutely NO idea what Mattie would have wanted for us, his friends, nor do I have the foggiest notion what he wanted us to do with his toys. I can only guess now and make the best decisions that work for Peter and I. When I reflect on why there was no legacy building with Mattie, the only conclusion I can come up with is the simple fact that ALL of us were fighting for Mattie's life. NONE of us accepted the fact that he was dying until it was abundantly evident. Talking about Mattie's death after his 14 month intense battle was just too painful and shocking. Not only for us but also for Mattie's care team. Sometimes people can't understand why Mattie elected to die at Georgetown. He elected this because he understood that these women cared greatly about him. They were our family who fought the battle with us each and every minute of the day. We fought for Mattie to the end, and somehow his death hit us suddenly. Though I suspect Mattie knew before any of us that he was dying.

Tonight after I was in a funk throughout the drive home, Peter reflected with me that Mattie did indeed leave us a legacy. It may not have been a written statement, but Mattie's legacy is both in tangible and intangible formats. Mattie's legacy is in his art work and Legos, which surrounds us at home, as well as in the friendships through Team Mattie that he helped to create and build for us. I do not have messages from Mattie about how he wanted to be remembered, nor messages about how he felt about me, but I have to come to peace with this. I write each and every night because this is the connection Mattie and I had with one another..... the blog is our legacy that we have built together and my words give his life meaning, purpose, and keep his memory alive.
 

No comments: