Tonight's picture was taken in October of 2006. Mattie was four years old and went to visit his babysitter's apartment. While there, Emily snapped a picture of Mattie having a great time. You can see the brightness, energy, and happiness in his eyes.
Quote of the day: A goal without a plan is just a wish. ~ Antoine de Saint-Exupery
The third annual Mattie Miracle Cancer Foundation Walk was a huge success. A success in which we met our financial goal. A goal that will help pay the salary of Georgetown University Hospital's newest Child Life Specialist, Jess Abrams.
Peter and I have been up since 5am today, worked a full day, and by this hour, I am too tired to string many sentences together. We have spent several hours digging out of the walk tonight. Peter was processing funds, my friend Karen was sorting through t-shirts and reorganizing them for storage, and I was busy trying to put away ALL walk materials. It took us hours, and I still have a way to go.
I am ending tonight's blog, with the hopes that over the next few days we will highlight the Walk. We are deeply grateful to our amazing team of volunteers, who worked intensely to set up the event this morning. It couldn't have happened without all of them, and most certainly we couldn't have met our goal without all of you.
I leave you with the speech that was shared today at the Walk by Marilyn Eichner. Marilyn is a mother of a cancer survivor. Marilyn, her daughter Danielle (a leukemia survivor), and Wade (Danielle's brother) were all speakers at the Walk, and highlighted our theme.... Love of Family.
Greetings from Marilyn Eichner--------------------------------
No one is ever
prepared to hear that their child has a life-threatening illness.
Imagine for a
moment taking your 11 1/2 year old to the pediatrician with a fever, something
you thought an antibiotic would surely treat ~ yet ~ ending up in a hospital
with that same, supposedly healthy child on life support within the first 72
hrs.
What, what is
that you say? Danielle has Leukemia, a type of blood cancer? But she's healthy,
she's only 11 1/2, she a swimmer, she's on summer vacation, soon she will be in
6th grade.The emotional trauma that came with that diagnoses would change our
lives forever. My name is Marilyn Eichner. My husband, Tom and I lived through
this nightmare with our daughter, Danielle, and her 4 siblings. I would like to
share with you briefly our story and why it is vital that hospitals/ and
treatment centers incorporate and offer psychosocial/psychological support and
intervention to families with a childhood cancer diagnoses.
As you now know
~ Danielle presented with fever and received a diagnoses of leukemia. Within
the first 3 days our daughter, the sister of Wanda, Christine, Wade, and
Rachael, would go through heart surgery, chest tubes, Kidney failure, dialysis,
seizures, respiratory failure, placement of a broviac tube to receive chemo
therapy, and eventually cranial radiation. Fear of the unknown would be
experience by all. We had no control, Danielle had no control, her siblings had
no control. People we've never meant were making life and death decisions for
our daughter. So, life as we knew it had changed forever.
How would we
cope as a family ~ honestly ~ you don't have the time nor the energy to think
about the emotional trauma your family will go through, let alone the lifelong
affects this trauma will have on our emotional well being and growth.
Literally, you and your family are at war. We all will live with trauma, fear,
anger, chaos, guilt, sadness, and abandonment for years. It truly does not take
a rocket scientist to know that any family embarking on this journey need every
means of psychosocial support available. Intervention is needed at the
beginning of diagnoses, throughout treatment, when treatment ends and sometimes
longer, if needed. As parents our main focus is our sick child, our secondary
concerns are the safety of our other children and finding family or friends to
clothe, feed, and provide a safe place for them to stay. Without their
permission, the siblings lives are changed. Their daily routines are changed,
they have no control over where they will sleep, who will tuck them in, when
can they go home, and when will things be normal again. When will we be a
complete family again? Siblings have every right to ask ~ What about their
needs, their loneliness, their fear ~ will I catch cancer? But to the sibling
these emotional feelings and thoughts are so insignificant when you're sister
is fighting for her life. Please understand emotional growth is a direct result
of your environment and their environment is unpredictable and their emotional
safety is at stake. Without consistent parental affection children develop
feelings of abandonment, and vulnerability, which can follow them for years.
Because siblings also experience years of living in chaos many live with Anger
not realizing that anger is the emotion that is not vulnerable, so intimidation
and anger are often used to keep control. Or you might have the compliant child
who learns not to share her fears, her anger, her feelings of abandonment, in
order to lessen the pain of the parents. These emotions are stuffed and
unbeknownst to their host they will re-surface years later causing more chaos.
I've briefly touched on the emotional upheaval the siblings experience and can
find themselves living with even years after their sibling treatment has ended.
Could
psychosocial/psychological intervention from the beginning have helped ~ I ask
~ what do you think? Lastly ~ The patient ~ the child diagnosed with cancer ~
who are they? (pointedly written by Erma Bombeck) They are children who are
poked at, x-rayed, smothered with love, ridiculed, punctured, spoiled,
abandoned by friends, pitied, counseled, experimented with, lied to, protected,
resented, and stared at. They are children who have been robbed of their
innocence and their childhood, neither of which they can ever recapture again.
They are children who have been sentenced to a period of uncertainty and pain
usually inflicted on the elderly who have lived rich, long lives. They are
little people who destiny has tapped on the shoulder and announced, "We
interrupt this life to bring you a message of horror." They are children
in need of psychosocial/psychological intervention.
All Money raised today, and in the
future will help provide the psychosocial/psychological services needed by the
whole family because we now know, through our family experience, a diagnoses of
childhood cancer affects the whole family.
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