Children's National Medical Center: Where the Yellow Brick Road Should Have Led
Dear Dorothy, Tin Man, Scarecrow and Lion,
You're gonna need a new GPS because the yellow brick road led you folks to the wrong place. If you are looking for brains, hearts and courage, I have found your destination. And it's not called Oz. It's called Children's National Medical Center. What you will find there is much scarier than flying monkeys and wicked witches. More importantly, though, you will find that the people who are facing these scary things, at first glance, look quite ordinary. Quickly, you will learn that these ordinary men, women and children have extraordinary amounts of brains, heart and courage. So extraordinary that it will take your breath away.
As a new member of Kyle's Kamp, I was invited recently to take a tour of the Children's National Medical Center in Washington, DC. Kyle's Kamp has and will continue to raise money to fund research, medical care and family support programs at Children's.
This is the first thing I can tell you about receiving the invitation. I was honored. The second thing I can tell you is that the invitation said Attire: Business Professional. Well, that was a bit stressful since I haven't worked in an office setting in nineteen years. The last time I wore business professional attire would be an era known as Jenn Skinner: The Marilyn Quayle Years. Anyway, I figured out what to wear and we went on our way.
On the tour of Children's, I encountered the most impressive brains the Scarecrow would ever hope to find. We attended a presentation by a number of the physicians including the head of oncology, Dr. Jeffrey Dome. In my head I just refer to him as Mr. Smarty Pants. The thing is that Mr. Smarty Pants was not the least bit smug and uppity about his smarty-pantsness. He was lovely and soft-spoken and grateful that we were there. The Tin Man would have been green with envy at the extraordinary heart Dr. Dome had to match his extraordinary brain.
Next, a young doctor spoke to us about the new Program for Cell Enhancement and Technologies for Immunotherapy which involves the creation of killer T-cells to attack multiple targets simultaneously on leukemia cells. Early data suggest that this treatment might have broader application to other types of cancer, possibly including solid tumors such as neuroblastoma and brain tumors.
(Yes, my face was all scrunched up as I was trying to follow the diagrams and such during this presentation. And yes, I just plagiarized every word of that scientific jargon right off of the handout they gave me.)
Whether you understand a word of this or not, this type of research is incredibly important and as incredibly expensive. These people have the brains to make this happen. They just need the money and they again, were so very grateful to organizations like Kyle's Kamp that will help them keep using their smarty-pantsness to save our kids.
We then heard Dr. Amanda Thompson talk about the Sibling Support Program which helps support sisters and brothers of children with cancer, hematological disorders and other immunological diseases. These children often feel left out as the sick sibling becomes the focus of all attention. They are impacted in specific ways and deserve an individualized kind of support and help when dealing with the death of a brother or sister. Kyle's Kamp was particularly proud to donate a significant amount of money raised during our Inaugural Gavin Rupp Open Golf Tournament to support these special kids. Dr. Thompson was elated and so very grateful. Again, big brains, big hearts.
Next, we went on a tour of the research facility. They showed us equipment that would make George Jetson's eyes bug out of his head. There were loads and loads of Mr. and Ms. Smarty Pants People running around doing amazing, important work for children. At one point, my head was hurting from trying so hard to understand t-cells, antibodies and equipment like the High Frequency Ultrasound machine. (All the cool kids call that the HIFU, by the way. You are welcome to throw that term around at your next dinner party.)
Dr. Dome then mentioned a 3D copy machine. As it was being explained I thought to myself, "Wait a second. This is quite familiar to me. How have I heard of this? Did I accidentally pick up A New England Journal of Medicine instead of a People last time I was at the dentist office? Oh, my gosh, I am totally following this. I am getting smarter just by being here!" Then my friend, Randi, whispered that the 3D copy machine was part of a storyline on Grey's Anatomy.
Our next venture was to tour the patient care area of the hospital. This is where Dr. Christopher Lawlor, he of giant brain and giant heart, shows us where patients come each day to fight their fight. The heart of this part of the hospital is obvious. Dr. Lawlor's eyes sparkle as he asks a young patient being released if he is going to make the rounds first to say good-bye to all his girlfriends. The walls in each room are bright and cheerful. There is an art therapy room full of masterpieces made by patients and siblings. There are smiling, friendly nurses. There are loving, dedicated parents.
But this place. This is where courage lives. This is where I find my feet walking the same ground as little child soldiers and exhausted mothers and fathers who would give anything to trade places with their babies. This is where the bravery of the strongest warrior pales in comparison to the courage of nine year old fighting leukemia, a twelve year old fighting osterosarcoma or a five year old fighting neuroblastoma. This is where photos of beautiful young faces, some still fighting and some that have left us, line the hallways. This is where tiny girls roll tall IV poles down the hallway. This is where little boys wait to let one kind of poison be pumped into their bodies to fight another poison. This is where the littlest among us teach the biggest among us that it's not the size of the dog in the fight, it's the size of the fight in the dog.
Children's National Medical Center was utterly fascinating to me. The scientists, the doctors, the nurses, and the young patients are focusing their minds and their hearts on an uncertain future, a very scary foe, with immense courage. And I could've and did at times feel small and insignificant in their presence. But this is what I realized. They need us. This hospital is not at the end of the yellow brick road. It's in the midst of a city full of folks taking care of their families, rushing to work, busy with their ordinary lives. They need us ordinary people to fight alongside them. They need all of us Scarecrows, Tin Men and Lions out here who feel our brains, our hearts, and our courage do not measure up to the formidable task of curing childhood cancer. We can help them. As Glinda the Good Witch says we already have the power. The doctors, the scientists, the nurses and the children are believing in their power. And their beautiful brains, their full hearts and their phenomenal courage are making me believe it, too.
Perhaps we might be able to join in this fight today. If not you, then who?
Jennifer P. Skinner
From the Outside Looking In: Stepping Out and Walking Through
At my first meeting as a committee member of the Kyle's Kamp charity organization to raise money and awareness for pediatric cancer, the founder, Rob Hahne, thanked us for our involvement in the charity, pointing out that there are not very many people that can handle this type of work. Kids suffering, kids losing their hair and sometimes their limbs, kids dying? It's just way too hard.
Can I tell you something?
I was one of those people and many days I still am that person. I am meeting amazing people through this organization. I am forming bonds with some of the strongest parents I have ever met. And I know that I am not a psychologist, a counselor, a pastor. Nothing qualifies me here. Nothing at all qualifies me to be in the presence of such fear, of grief, of pain, of suffering. How often does the feeling of inadequacy, the feeling of not being enough, the feeling of just being a regular guy or gal keep us from going, from serving, from listening to God? Maybe it doesn't happen to you. But it happens to me ALL.THE.TIME.
And I'm trying mightily to still that voice of inadequacy. It is true, of course. Nothing qualifies me to be invited into such personal space. Except for one thing. Let's make that One thing - capital O. My God is qualifying me. My God is telling me to go. He is telling me He'll be with me through every effort and He tells me in no uncertain terms: You. It's time. Go.
Now, I honestly believe that sometimes the "going" that is required of us can be only as far as the four walls of a home. Sometimes the "going' doesn't reach farther than a block, a neighborhood, a school. And that kind of going? Caring for your own people, your own neighbors? I believe that is as far as God wants us to go sometimes, certainly during particular seasons in our lives. And that can, absolutely, be enough. This year, though, God is asking me to look outside, step outside, walk through something new. And I cannot even tell you how scary that is.
My heart feels too deeply, as most women's hearts do. Will it be too hard to look? Will it be too painful to see the suffering? To sit with the grieving? My lips speak too many words, as many women's lips do. Will I say the wrong thing? Will I sit mute and dumbfounded? Can't I just sit here behind my computer and write about it? And how about this: If I look too closely, am I in danger of letting the faces of these kids infiltrate every moment of my every day? Will they crowd out my own precious children?
As I started out on this endeavor in the last month or so, I tried to set my mind. I jumbled it up with ideas, with Bible verses, with comforting thoughts and with philosophical quotes about giving and serving and helping. I racked my brain for fundraising ideas and awareness plans. I worried that I just wasn't creative enough or experienced enough to come up with an effective plan.
But then I thought this: My mind is not what I need here. My little mind can barely wrap itself around the fact that children are dying of cancer. That is why He gives us our hearts. God has done something different with my heart in the past six months. He has done it through the life of Gavin Rupp who left too soon. He has done it equally through the lives of Joe, Kyle and Drew Skinner who are still very much here. And this new heart of mine? This heart is big enough to hold the space for these children and for their parents at the very same time that it keeps space for my own children and my own husband. My heart can be big enough even when my little mind cannot conjure up a single profound or comforting statement.
So, in the last week or two, my heart and I have just shown up. I have attended a fundraiser with a mom of a sick child and have sat at the table of a mom who has buried one. These women are pained and grieved and strong and hopeful all at once. They are purposeful and lost and determined and frustrated all at once. And so my heart and I just fumble around through all of that with them. My heart and I don't have to be full of wisdom. We just have to be present. We are to sit. We are to listen intently. We are to hug and hold and squeeze tight. We are to shed tears and look deeply into eyes of pain. We are often to speak no words at all and just nod our heads. We are to try to muster a laugh together. We are to share a look, a smile, or a deep, frustrated sigh. We are to love fiercely and completely.
When my heart and I do those things, I find that I am not at all burdened by the pain of another. On the contrary, I am privileged and honored to invite someone's pain in. This is what I find when I sit with a woman in the midst of fear and loss so brutal that I can't comprehend it. I just sit and feel all of it with her. It is crushing and it is horrible. But then suddenly, it becomes graceful.
Her eyes crinkle in the sweetest way when she smiles. Her giggle floats out and lingers across the kitchen. (Oh, thank you, God, she does still smile and she does still laugh!) Her pain is still new and it is still deep. The anger is right at the surface, right under what I know is a quiet demeanor. Her grief pierces all the way into my heart. But the thing is, my heart doesn't break. My heart and I just fill up with her. And I am stunned at the gift God has given me by allowing me to be in the presence of something so real and so raw. I am humbled to realize that in her sharing, she is teaching me something - something I can turn around and teach to my children. I find that God is giving me an enormous gift. He is blessing me with what I thought I would not be able to bear.
I was afraid. I was afraid and standing on the outside, just glancing in, but trying not to fall too deeply. What I find is that He won't let us drown. All the while, I will still know that as a human being, I am completely unqualified. At the same time, I know that He created me in His image so that I might comfort as He has comforted me. And though I will fumble and trip on my words and not know at all what to say, He will continue to whisper to me this:
Go to the edge. Look over the side. Do not turn around. Step in for My people. Though your hands are shaky, still hold tight to their hands. Though your step is unsteady, still walk through to the other side with them. We will not leave them alone. I am in you and I am in them. Together we can get there. Together we will learn beautiful lessons. Together we might even find a way to glimpse joy again.
Jennifer P. Skinner
Wednesday, October 23, 2013 When Beauty Springs on a Fall Morning: The Inaugural Gavin Rupp Open
I love the summer. Oh, how I love the heat, the sun, the smell of coconut sunscreen and the inevitable need for air conditioning. I crave it when it leaves me and though I am always stunned by the beauty of my adopted home state of Virginia in the fall, often I feel a sense of loss as I watch summer fade away.
Not this time. This week our autumn dawned in Virginia with the most perfect timing in the most perfect setting. It was cool, but not too cold. The sun shone bright. The orange, yellow and red leaves were stunning. The sky was blue and clear for as far as I could see.
I watched autumn arrive Monday on the green grass of a golf course as a part of the Kyle's Kamp Gavin Rupp Open which was held for the first time this year to raise money for Pediatric Cancer patients and their families. And boy, was it gorgeous. But the autumn colors, the blinding sunshine and the glorious leaves? Well, they were nothing compared to the beauty of the men, women and children I rubbed elbows with all day. And most certainly, the exquisite landscape paled in comparison to the boy we came to honor and remember.
And in light of this world of darkness and despair, isn't that quite startling? Imperfect are we, the human race. Flawed and broken and damaged. We stumble and fall. It seems we're doing and saying all the wrong things all the time. We are selfish and narcissistic. Our culture, our news reporters and our cable talk shows scream it at us hour after hour. Oh, look at how screwed up we are. Well, I declare, we're all just a big ol' mess.
This morning I respectfully disagree. On Monday, I watched throngs of God's frail, imperfect, flawed people. And what I saw in those folks' shining eyes, in their embracing arms, in their generous hands?
I saw beauty. Beauty in a group of ordinary human beings that shone even brighter than the breathtaking glory of autumn in Virginia.
We were and are broken by the loss of Gavin Rupp. We were and are stunned by how cancer robs children of their finest days. We have heard too many stories of families plunged into grief we cannot comprehend. We are all mixed up. We are limping along, still wiping the dust from our eyes and asking our God, "What the HECK was that about?!"
I am quite sure that we will not find an appropriate answer this side of heaven.
But we, slowly and deliberately, are dusting off the ashes. We are looking for beauty. Our eyes are opened now. We are searching desperately. And this is what we found on Monday.
We found Kyle and Mathias fighting their own battles against cancer while draining putts on Hole #15 with George, Ian, Abby and Gavin's brave dad as golfers cheered them on.
We found volunteers taking off work and showing up in droves begging to be put to work.
We found Gavin's siblings charming everyone around the golf course - Abby with her sparkling blue eyes and Ian with his sweet, shy smile.
We found precious Tara continuing her own battle against cancer as she helped draw the raffle tickets and, to the great delight of the crowd, found herself with a boatload of treasures at the evening's end.
We found the hands of ridiculously generous people raised over and over to outbid each other at the auction.
We found Mr. Ayers winning the 50/50 and then promptly turning around and giving every dime right back to Kyle's Kamp
Corporate greed? Not here. We found businesses around our community stepping up with sponsorships and donated silent auction items that were coming out of our ears.
Spoiled professional athletes? Wrong again. We found Bryce Harper's loyalty to Gavin continue as he shipped multiple items to our auction even up until two days before the event.
Hey, Gavin, I do believe, that perhaps we found some beauty. Did you see? Did you see it floating up to you? It was everywhere, Gavin. It rose up above us into the sky and through the trees and hovered around your sweet family. Your parents were simply amazing. Your sister, your brother, your friends. My thesaurus has no adequate word for them. They were grace and hope and strength, buddy. We were baffled by their beauty.
So, yes, among the brokenness, among the sadness and the grief, I think we found some beauty. But we will not stop looking. We are going to keep floundering along with hope and purpose and faith. We promise you. We promise Kyle, Tara, Mathias, Gabriella, Chris, Reed, Shawn, Connor and Jackson. We promise each and every one.
We are projecting the total amount raised by a golf tournament thrown together in six weeks to be upwards of $30,000 for Children's National Hospital - for their patients and for programs for their siblings.
This is beauty. The beauty of the ordinary folks you left behind, Gavin. You, your life, your legacy. You are helping us to become something extraordinary. Something even more beautiful than the dawning of autumn on an October morning in Virginia.
Jenn Skinner is a Christian and a Texan(Texas Longhorn to be specific!) living in beautiful Virginia with her very patient and funny husband and her 3 very impatient and funny little boys/ball players, She joined the fight against Pediatric Cancer with Kyle's Kamp in 2013. She also writes about just about everything and nothing and the ridiculously abundant life God has gifted her at her blog, The View From Behind Home Plate