Tonight's picture was taken in April of 2009. This is the last birthday Mattie celebrated. Mattie turned 7, in 2009. To me Mattie will always be seven years old. As we approach April 4, I reflect on the fact that Mattie would be in sixth grade now and turning 12 years old. It just doesn't seem possible. I have no idea what he would even look like or be interested in now. What I do know is that Mattie's birthday week is not an easy week for us. This will be the fifth birthday we have celebrated without him and it hasn't gotten any easier and I haven't figured out any better plan on how to acknowledge the day. So ultimately what we do is usually leave town to avoid the dilemma of what to do, not to do, who will remember, or not remember. This particular photo was taken of Mattie at the hospital right outside his PICU room holding all the balloons he received over the course of the week for his birthday!
Quote of the day: Not much happens without a dream. And for something great to happen, there must be a great dream. Behind every great achievement is a dreamer of great dreams. Much more than a dreamer is required to bring it to reality; but the dream must be there first. ~ Robert K. Greenleaf
Last night, Mattie Miracle was honored by Medstar Georgetown University Hospital with the Flame of Hope Award. The award was given at the Pediatrics Gala held at the Andrew Mellon Auditorium on Constitution Avenue, in North West Washington, DC. The interior of the building is quite magical and I have a feeling Mattie was with us in spirit. Tonight's posting contains some photos from the gala, along with our acceptance remarks. However, I did want to make a couple of comments about last night. The first comment is we were very fortunate to have a table of friends and supporters with us. It made the evening extra special. As Peter said.... receiving an award wouldn't mean as much without having people we care about with us to share in that moment! I couldn't agree more.
After I delivered my speech, which you can read below, several people came up to me throughout the night to chat. As a mental health professional by training, I am used to talking about feelings, revealing feelings, and candid conversation. This is normal to me. Processing feelings and helping others is what life is all about. It is what bonds people together and brings them closer. I also believe that for people to understand who we are as a Foundation, they have to understand who we are and where we came from. What is memorable is our story, the emotions of our story and it is our story that helps to explain what drives us to our mission for psychosocial care. My portion of the acceptance speech is candid, revealing, and very feeling oriented. You will either appreciate it and be captured by these remarks or not. When I was up on stage last night, the room was large, with 500 in attendance and the way the lighting was angled onto the stage it was very hard to make eye contact with any one in the audience. Therefore, I really couldn't see who was looking at me, but I certainly could hear that the room was dead silent while I was talking.
Once I was off the stage throughout the night, I had people approach me and reveal their own personal stories of loss. My story made them feel comfortable enough to share their own story. Many of these individuals thanked me, some cried and said this should have never happened to us, and some couldn't even talk to me because they were too distraught with emotion, but just wanted to give me a hug. A woman who lost her child actually said to Peter and me........ "others don't get it and can't get it. But would we want them to get it?" A very interesting question, we thought! I may not want people to get the true dimensions of our loss, but would I like others to have more compassion and empathy???? Absolutely!
Front row from left to right: Dr. Bob Henshaw, Heidi Anderson, Phil Anderson, JD Lytle, and Tina Lytle.
Back row from left to right: Ann Henshaw, Victoria Sardi-Brown, Dr. Aziza Shad, Tad Ferris, Peter Brown, Junko Funahashi, and Tamra Bentsen.
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Peter's Speech:
Thank you ladies and
gentlemen. First, some thank
yous....
FIRST, We want to thank the Georgetown Pediatrics Board for bestowing this award upon us. It really is quite an honor, and we are humbled.
SECOND, We want to thank Mary Hoobler, the Gala's
Founder. Mary, you did a remarkable
thing by creating this Gala and you have continued to do amazing things each
year with this Gala and with your support of the Georgetown Pediatrics Program.
THIRD, We want to thank our Donors and Sponsors, who
have and continue to support us each year with their generosity. We could not
run the programs that we do and touch the lives of children and families
without their support.
LAST, We want to thank our Friends and Board
Members who came tonight to support us and are sitting right here at Table 1. Without you, Vicki and I could not do what we
do, so thank you!
..................... I am just going to say a few
words about Mattie Miracle, and then turn it over to Vicki who will say a few
words about what the flame of hope award means to us.
Mattie Miracle is a 501c3 public charity,
which focuses on the psychosocial needs and support of children and their
families living with childhood cancer.
Vicki and I founded Mattie Miracle in the memory
of our only child and son, Mattie, pictured behind us tonight, who was
diagnosed at age 6 with Osteosarcoma, and at age 7 1/2 died in our arms at Georgetown
from this disease.
Mattie battled and suffered
through 14 months of toxic chemotherapies, limb salvaging surgeries, a
sternotomy, experimental immunological therapy, and spent almost 100% of the
last 14 months of his life at Georgetown.
It was through this horrific
battle that we learned 2 important things: when
a child is diagnosed it is a family diagnosis affecting parents,
siblings, grandparents, and other family members and friends, and
that it is essential that the child and these extended family members be supported
psychologically, socially and emotionally, because
remember it's not just about the medicine.
Mattie Miracle has three primary program areas:
Awareness, Advocacy and Psychosocial Support.
Some of the program activities include:
A Food Cart for in-patient families, so that a parent doesn't have to leave the side of their sick child to get something to eat
Item drives like travel toiletries, art
supplies and Halloween candy. This past November over 2,000 lbs of candy was collected
and donated to Georgetown
A nurse support group to provide psychosocial
support to nurses and to help them process the issues they face every day as
they deliver quality care to their patients and families
We fund a Child Life Specialist Position at the hospital,
to support kids and their families through their day-to-day existence. Anyone who has ever spent any time on a pediatric unit knows the incredible things these child life specialists do
Lastly, in 2012, we kicked off a National Initiative to create a Psychosocial Standards of Care for Children and Families Living with Childhood Cancer. We have over 4 dozen clinicians, HemOncs, Nurses, Psychiatrists, Psychologists, Child life and other mental health professionals, representing amazing organizations like NCI, Dana Farber, Memorial Sloan Kettering, Nemours, St. Judes and many others, working together to develop a standard of care.
As many of you may know if you
are diagnosed, no matter where you go, you will receive a minimum standard of
medical care, because a standard has been defined for the medical treatment,
but not for the psychosocial care.
So this is what we are working to create,
and it is our mission to
establish these standards, so that all children and their families, living with
childhood cancer, get a minimum level of psychological,
social and emotional support they deserve
and need, when they hear those four awful words: Your
Child Has Cancer.
Vicki's Speech:
I am so happy
Peter could highlight some of Mattie Miracle's achievements with you. It seems
remarkable to reflect on the journey we have been on these past four years from
losing our only child to Osteosarcoma to pioneering new ground in the field of psychosocial
care for children with cancer at both the local and national levels.
In the next
few minutes it is my honor to share the personal significance, meaning, and
importance of the Flame of Hope award to us. Peter and I wear two hats. We are
the co-founders of Mattie Miracle and therefore run and oversee all its day to
day operations. Yet our other hat, and probably most important one, will always
be that of Mattie's parents!
Mattie may
not be physically alive, but his spirit is embodied within the Foundation. When
I plan a Mattie Miracle event, host a Mattie Miracle conference, or produce
Mattie Miracle materials, in the corner of my mind is always the question.............
is this representing Mattie's memory to the best of my ability? Therefore, I
would say it is very hard to balance the role of Foundation leader and also be
a grieving parent on a good day. But on a bad day, well..... that is a whole
other conversation. Which is perhaps best reserved for a completely different
type of occasion!
When Tim
Mooney, Georgetown's associate administrator, called me several months ago to
tell me that Mattie Miracle was nominated and selected by the Hospital's
Pediatric board to be the 2014 Flame of Hope recipient, I have to admit that I
was thoroughly in shock. Tim proceeded to highlight for me past recipients of
this distinguished award, and after hearing this list, I joked with Tim and I
literally said....... are you sure the board knows what they are doing by
picking Mattie Miracle!!!? With that we both broke out in laughter. But in the
next breath Tim reminded me that no one would have blamed Peter and me if after
Mattie's death we just walked away and never looked back.
Which is really
is an excellent point! Why didn't we walk away? We certainly could have!!! What
keeps us coming back?! The answer comes down to one very simple and yet
powerful word.... HOPE.
Certainly Georgetown provided us excellent medical
care, but in the end what we ultimately remember is Dr. Shad's team provided us
with Hope. Hope when really no other cancer institution had the compassion and
I might add the guts to do this. The quality of care and the hope we received
gave us 14 additional months with our son, which is something you can't put a
price on!
I would like to think that we are all born with an internal flame of hope. Periodically in our life this flame is met with various challenges and obstacles that can cause it to flicker and in some cases almost dwindle into extinction. I remember in September of 2008, Peter and I took Mattie to New York City to be evaluated by a well known cancer center regarding his treatment. Mattie was seen by two leading experts, one was an oncologist and another an orthopedic surgeon. After both meetings, Peter and I were horrified because their consensus was to do nothing. I mean absolutely nothing.... no chemotherapy and no surgery, but instead to immediately move to end of life care. Needless to say, hearing those words from two very respected doctors, made me feel like my life was over. I had no hope, and yet I had an energetic six year old staring at me, expecting guidance, direction, and next steps.
The car ride
home from NY to DC, was very solemn, it felt
more like riding in a hearse rather than our family car. Mattie was sleeping beside
me and then my cell phone rang. It was Catherine Silver, Mattie's case manager
from Georgetown. I distinctly remember what Catherine said to me. She said, "Vicki,
we heard the news from NY, and your Georgetown Family is waiting your arrival."
In essence what Catherine was saying was we don't know what the outcome will be
here either, but we are willing to try treatment and venture this road together.
That phone call that day, reignited my flame of hope. It gave me hope so that I
could help Mattie find the strength and courage he needed to continue fighting.
One of the
things we are most proud of is being able to support Linda Kim and her Child
Life Program at Georgetown. When Linda worked with Mattie, she became what I
refer to as my Medical Mary Poppins. If you have ever interacted with Linda you
would know why. Mary Poppins had her bag, Linda has her magic cart on wheels! Linda
always comes prepared and seems to have the solution to just about any
difficult problem or issue. She was Mattie's child life specialist, but Linda
was also there for me every step of the way. She kept my flame of hope alive,
in ways that are too numerous to mention here. Now almost five years later,
when I come to the hospital Linda still has a way of surrounding me with people
who knew and remember Mattie. Which may be why I always say, when I want to
remember Mattie and feel his presence, all I have to do is just walk through
the doors of Georgetown University Hospital.
Certainly
awards mean different things to people. To us, the Flame of Hope Award signifies
three things. First it acknowledges that
the work we are doing is making a difference in the lives of children with
cancer and their families, and second, it helps to reignite our internal flame of
hope.
Lastly, and probably
most importantly to us, this award contributes to Mattie's legacy. Future
generations will look at the gala program and see that Mattie Miracle was a
recipient in 2014, and wonder, ask, and hopefully want to find
out JUST WHO was the "Mattie" in the Mattie Miracle Cancer
Foundation? Thank you for helping us keep Mattie's memory alive and bestowing Mattie
Miracle with this honor!
1 comment:
Congrats Peter and Vicki!!! you look beautiful and I know Mattie is very proud of you!!!
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