The Knowledge That I Can't Unknow
At Kyle's Kamp meetings we have all kinds of plans. All kinds of ideas. All kinds of knowledge to share. I've learned a lot in the last couple of years about childhood cancer. As we talk over each other and our voices bounce off the walls of our little office, we have to remember to keep the focus of our mission in mind. Of course, the ultimate mission of childhood cancer organizations is that we would some day be a useless group of passionate people looking for somewhere else to focus our ideas and knowledge. We all want the end of this road. We want the end of suffering. We want the cure.
There are lots of roads that lead to that place. Many organizations work for patient and family care, many for research dollars, many for scholarships for those heading into the medical profession, some for summer camps for children suffering cancer, and some for specific research into specific types of cancer. In the end, just about every single organization has "AWARENESS" in big bold letters at the top of any campaign.
At Kyle's Kamp when we think of the term "awareness" we refer to it as "making the unknown known". It's not that people don't care about children with cancer. Of course, they do. They just don't know what they don't know. And we have to give them the knowledge. So we type up statistics and we send out emails. We post on social media, we promote rallies and we hold conferences. We scour studies and throw out facts.
*Only 4% of federal research dollars are spent on childhood cancer.
*7 kids die of cancer a day in the United States
*Childhood cancer is the number one killer of kids by disease in the United States
*In the past 20 years the FDA has approved only 2 new drugs for pediatric cancer treatment.
People, I can be in the middle of a serious superfreak meltdown, certain that I am hopelessly lost and yet my car can pretty much find its way all by itself to any darn baseball field in Virginia. If I can't remember the name of that guy that sat behind me in math class in 7th grade, it's highly likely that within an hour, I will be able to find out not only his name, but also the names of his wife, his children, his pets and whether or not he flipped out when Russell Wilson threw the ball on 2nd down instead of handing it off to Marshawn Lynch. And yet, children with cancer in 2015 are often times receiving the same medicines that children did in the 1950s. What in Sam Hill is up with that?
This kind of knowledge can make me coconuts, but honestly, it is not the statistics, the facts, or the numbers that nag at me in the night.
Because that's the head knowledge. And, y'all. I'm a woman. I'm a friend. I'm a mom. I don't deal in head knowledge as often as I deal in heart knowledge. And it's the heart knowledge - the knowledge that I've gained from the relationships I've formed that has settled in and taken root. The knowledge learned from looking into the vacant eyes of grieving moms and sitting in funerals with teenagers and watching faces of big, strong men crumple in despair. It's a knowledge that I can't unknow.
I can't unknow the suffering. I can't unknow the damage the death of a child does to an entire family. The way it threatens the strongest of marriages. The way it irretrievably shifts the dynamics of siblings by forcing a middle child to become the oldest or leaving a twin to suddenly navigate the world alone. I can't unknow the image of a gaggle of ballplayers, who after years of playing Little League together, will take to the frozen field today to tryout for their high school baseball team without one of their own. I can't unknow how a young man had to go to his high school orientation a few weeks ago without his best friend walking beside him. I can't unknow how worry settles in any time one of the children I've met who are in remission gets a fever or a cough. I can't unknow the nurses I've met. The one who puts on a brave face and works for long hours and days and still finds the time to drive hours in the icy rain and traffic to a funeral home to hug the parents of a child lost. I can't unknow an entire community of cars lined up for miles and officers blocking streets, all for a 13 year old's funeral. I can't unknow the look on my son's face when I tell him that I don't know how to explain that I still believe that God heard our prayers and loves us more than we can imagine even if He didn't answer us the way we wanted Him to. Even if.
I am aware of horrible things now. I have some limited knowledge of what it is like to watch a child go through chemo. I have some limited knowledge of what it is to watch a child suffer cognitive effects of radiation. I have some limited knowledge of Hospice and palliative care. I have some limited knowledge of what it is to have strangers come and take your child's body away from your home. And I really did think that it would be that knowledge - the knowledge of the ugly things that as a mom, I can hardly wrap my head around, that would haunt me the most as I lay awake at night and pray for my new friends.
But out of all of the things my friends have shared with me, it is the simplest of words that a mother speaks that are the most difficult for me to forget.
"I just miss him," she whispers, "I just miss him so much."
It is so simple and yet so impossibly complicated. My friend deeply, desperately misses her child. I can talk to her of faith and the end of her child's suffering. We can discuss heaven and beauty in the ashes and counting blessings and making each day forward mean something. We can talk about making a difference for the children who are fighting now. We can lobby and raise money. But I cannot help her stop missing her child.
It is the simplest, most painful knowledge of all. This knowledge that she misses her boy so very, very much. This knowledge that the missing will not end. This is the knowledge that I cannot ever unknow.
Image from quotepictures.net
When a child is diagnosed with cancer, the entire focus of a family and even of a community shifts, as it must for a time, to the child in treatment. The aim of childhood cancer advocates around the country is to raise awareness so that these children will receive as much attention and love as possible. Through the efforts of Kyle's Kamp and organizations like it, the hope is that these patients will feel special and important, and that all of this attention and focus will move us ever closer to our ultimate goal: a cure.
Of course, these children deserve such attention, as they face unimaginable stress and challenges, so childhood cancer charities do what we can to lessen their burdens. I have seen amazing work done by countless charities to keep the innocence and fun in a childhood that cancer relentlessly attempts to steal. And every single one of us who works in this community is better for it. This work is the proof of the prayer of St. Francis of Assisi:
O Divine Master,
grant that I may not so much seek to be consoled, as to console;
to be understood, as to understand;
to be loved, as to love.
For it is in giving that we receive
All of the people who I have met working toward a cure for childhood cancer have experienced the fact of this ancient prayer. That it is in giving to this cause that we receive. That it is in loving these children that we feel love. That it is in consoling a grieving parent that we feel consoled. It is an experience I want my children to know. It is an experience I think that all children should know - healthy children and children with cancer.
In December, Kyle's Kamp was able to help cancer patients experience the truth of St. Francis's prayer. We opened a "Holiday Store" at the Children's Center for Cancer and Blood Disorders of Northern Virginia. A section of the clinic's waiting room was decorated like a Winter Wonderland with glittering snowflakes hung from the ceiling and colorful holiday scenes painted on the windows. Thanks to generous donations from countless individuals and organizations including Smashing Walnuts and Stillbrave, the shop was overflowing with gifts for any and everyone - toddlers, teens, moms and dads.
The Kyle's Kamp Holiday Store allowed children coming to the clinic for treatment to "shop" (free of charge) for their moms, dads and siblings. After the children chose the perfect gift for each member of his or her family, volunteers wrapped the presents for them. And, of course, we let them choose a little something for themselves! The children then left the clinic after their appointments, arms full of brightly colored packages, to surprise their families with the gifts they had picked out all on their own. Children who did not have appointments scheduled that week were able to stop by the Kyle's Kamp office the following weekend to shop for their families.
Yes, these children receive a lot of attention, a lot of focus. And they deserve it. They also deserve to be the givers. Each child chose each gift with a lot of thought and a lot of love. They felt proud of the gifts they could place under their tree for the family members who love them so well.
For it is in giving that we receive. Yes, indeed, it is.
Hope has finished her shopping - just needs her sleigh and some reindeer!
Tara's got something for Dad!
It's so hard to choose!
Vincent spreads Christmas cheer!
A little more Christmas cheer from Vincent
One of our Volunteer Elves Hard at Work!
Sabrina shops 'til she drops!
Alex's family had to take turns promising not to peek as he chose gifts for them!
Kyle and Sabrina know that hugs are the very best gift of all!
Kyle's Kamp would like to thank the wonderful volunteers who helped out at the clinic and in the office and the following individuals and organizations for their generous donations to the 2014 Holiday Store: Cub Scout Pack 1459 from Poplar Tree Elementary, Stillbrave, Smashing Walnuts, Home Depot, Deloitte, Melissa Allard, Christine Kerr, Cherye Moore, Heather Marohn, Winky Burks, Tanya MacInnis, Gail Ritter, Linda Claymier, Tracy Dean, Christine Remy, Donna Speckhard, Chris & Sandy Rupp, Jackie Graham, Sandra Yokum, Linda Long, Kelli Johnson, Sarah Mahoney, Julia Koehler, Mary Martin, Kevin & Tracy Mawyer, Tom Mitchell, Traci Wrobel, Gail Palmer, Muffin Pelligrino, Sydney Rollison, Tina Rollison, Susan Rouse, Alexis Schaffer, Lisa Shaw, Cindy Skinner, Chris Waltrous, Teresa Wright, Liz Saum, Chris & Krista Woods, Ann Schuneman, Gloria Haines, Marilyn Maticic,Scarlett Haymore, Lynette Meglio, Lynda Gibss and many, many more.
Giving Thanks in All Circumstances
For those of us involved in childhood cancer charity work, our requests are many. We have so very many prayers, so many needs, so many pleas. We pray for steady hands and wisdom for surgeons and doctors. We hope for innovation and breakthroughs in medical science. We beg that scans be clear. We lift up names of little ones in hopes they will tolerate treatments with less side effects. We plead comfort and peace in decision making for parents. We ask for more time and less pain. In the midst of all this, we pray the biggest prayer of all: Please God, bring the miracle. Please, bring the cure.
And as I pray these big prayers, He points me to seek out His people. We, at Kyle's Kamp, ask a lot of these people. We reach out to friends and family members, to neighbors and business leaders. We can be persistent, relentless and perhaps a little annoying. We send letters, texts and emails. We post on Facebook and Twitter. We hold lunch strategy sessions and committee meetings.
We need help. We need volunteers. We need money. We need the people.
And frankly, sometimes all of us get caught up in the needs of the daunting circumstances we find in this work. But as we move closer to Thanksgiving we are called to give thanks in all circumstances. While certainly there is much we still want in our fight against childhood cancer, we are even more certain that the victories we have seen this year in our organization prove that there is much we have been given. While the circumstances of childhood cancer are brutal, we are able to recognize many blessings. These blessings are the ordinary men, women and children in our community who do extraordinary things by giving generously, abundantly, and graciously for children that are not their own.
Kyle's Kamp would like to thank the following people for their work to help answer the pleas and requests of our organization.
Dr. Zach Casagrande, Northern Virginia Orthodontics
Westfields Business Owners Association
The Lombardozzi Family
National Rifle Association
Southwestern Youth Association
Chantilly Youth Association
The Washington Nationals
Northern Virginia Travel Baseball League
Glory Days Grill - Stone Ridge
On behalf of all children fighting cancer and their families, Kyle's Kamp would like to wish all of our volunteers and sponsors a very Happy Thanksgiving. We are enormously grateful for your generous and selfless hearts.
Helping Super Strong Siblings Smile
I am one of three children - the middle child - sandwiched between an older brother and a younger sister. I am enormously grateful for my siblings, especially as I get older. I am increasingly aware of how they have affected the person that I am and the way I see the world. Each of us occupy a different region in the country - one in the West, one in the South and one in the East. And yet, these fifty states seem not so widespread to me when I know that those two - the original and first humans who I could call "my people" - are walking the same Earth, breathing the same air and sleeping under the same moon as am I each night. There are times, fortunately or unfortunately, that I feel like my brother and sister are about as closely wrapped around me as my own skin. I believe in some therapy sessions, this might be referred to as rampantly dangerous codependency. :-)
In an article from last year titled "The Gift of Siblings", Frank Bruni wrote, "My siblings have certainly seen me at my worst, and I’ve seen them at theirs. No one has bolted. It’s as if we signed some contract long ago, before we were even aware of what we were getting into, and over time gained the wisdom to see that we hadn’t been duped. We’d been graced: with a center of gravity; with an audience that never averts its gaze and doesn’t stint on applause."
In the last year of volunteering at Kyle's Kamp, I have met not only children with cancer, but the brothers and sisters who fight alongside them. They are younger and older, boys and girls. Grant, Robert and Maddie. Troy, Jake, Ian and Abby. Ceci, Matthew and Cole. All healthy, vibrant children. All who desperately need our prayers and help. In the midst of those meetings, I often think of the unique gift of my own siblings, the special way that our hearts are joined and the comfort I feel at the assumption that we will grow old, holding our family together even as generations come and go behind and in front of us.
The Rupp Kids: Gavin, Ian and Abby
The brothers and sisters of children fighting cancer cannot count on that comforting assumption. In addition to the obvious distress that a sibling will feel if the patient dies, these children suffer significantly during the diagnosis and treatment of the cancer patient.
Kyle catches a nap on his big brother, Robert
The emotions hurtling through a sibling's heart run the gamut from fear, anxiety and sadness to guilt, anger and jealousy. A sister might fear for her sibling, but in many cases will worry that mom or dad or even she, herself, will "catch" cancer. A brother might feel envy that his sibling receives special attention, gifts and individual time with his parents, all the while feeling guilt for these very reasonable and common thoughts. Many children might feel they have lost their own identities - always being associated as the "sister of . . ." or "the brother of . . ." When the focus of an entire family and in many cases of an entire community shifts to literally saving the life of one of its members, small children feel conflicting emotions that the most mature of adults could not be expected to navigate without help.
For these reasons, Sandy and Chris Rupp, parents of Gavin Rupp who was lost to brain cancer in 2013, have designated that funds raised at the Kyle's Kamp Gavin Rupp Open golf tournament will honor Gavin's brother and sister, Ian and Abby, and the many other siblings of cancer patients in the Washington, DC and Northern Virginia area. These funds have helped Kyle's Kamp to support existing programs and create new ones to meet the needs of the brave and dedicated brothers and sisters who have found themselves partners in a battle in which no veteran warrior would easily engage.
The Rupps with patients, siblings and golfers at the 2014 Gavin Rupp Open
Through Kyle's Kamp's SibStrong Smiles program sisters and brothers of these patients are finding support in many ways.
Dr. Amanda Thompson, of Children's National Medical Center says, "Because of Sibstrong, we have been able to create resource libraries at both the downtown and Northern VA campuses focused on siblings of children with cancer. We have a monthly ‘Sibling Spotlight’ that features a special boy or girl, nominated by their parent or their brother or sister in treatment, who deserves to be recognized as a hero; that individual gets their picture and story posted in clinic and is rewarded with a certificate and Target gift card. We have been able to create sibling comfort care bags for siblings who are grieving the loss of their brother and sister. And we have launched the SibStrong Smiles Wish Program, where nominated siblings receive a small wish that recognizes that they are part of the cancer journey, that they are not forgotten, and that they are special too. We’ve conducted two wishes to date—one involved a horseback riding lesson and meeting with Elsa from Frozen and the other involved a dance lesson and karaoke machine. This is a unique program, made possible by the Gavin Rupp Open, that has been invaluable to our patients and families."
Sweet Super Sibs Miss G. and Miss I. take pony rides together
Sisters and brothers of sick children just wish to turn the clock back and return to life before cancer took over the family. Kyle's Kamp works hard to fund research so that scientists and doctors can create medicines and therapies that might one day help families go back to their life before cancer quickly. We all pray that siblings might grow old together, introducing brothers-in-law and sisters-in law, nephews and nieces into an evergrowing family. We, unfortunately, cannot grant that wish just yet. Until then, we will continue to be dedicated to every member of the family in its journey against cancer.
Ceci visits her little sister, Sabrina
These days, we at Kyle's Kamp are praying mightily for a super strong sibling named Troy who is rarely away from the side of his brother, Mathias, as he fights osteosarcoma. It is in seeing Troy's love for his brother that I am watching how this disease robs more than just the patient of a childhood. Cancer takes the light and ease out of the world for many healthy children. SibStrong Smiles aims to help put some of that light back into their hearts, if even for just a bit. It is our mission that this will renew some of their hope, some of their joy and some of their strength so that they can go back home and pour all of those good things into their suffering sibling. Troy and children like him are doing a mighty work. A mighty work they did not choose, they did not plan. A mighty work which they cannot do alone. Please pray for Troy as he falls in step to march alongside in battle with his first and best friend.
Mathias provides some homework help to Troy
If you would like to know more about how to help sisters and brothers of cancer patients by assistance with granting wishes or in other ways, please contact Tracy Mawyer at firstname.lastname@example.org.
Well, it's that day again. September is here. It's the first day of school.
I get stuck on this day between glee and gratitude and fret and fear. Between the hope of new beginnings and time to myself and the torment of the ridiculously fast passage of time. I relish the way this season in my life opens me up to vast possibilities: write a book, run a marathon, take a new Bible study class, have a lunch date with my husband. At the same time, as I watch a boy turned man saunter out the door, I curse my inability to go back to soggy Cheerios stuck in blond curls and a pudgy Pampers-clad bottom snuggled on the couch watching Blue's Clues.
I spend much of the morning scrolling through Facebook photos of kids with bright new backpacks and shiny new shoes. Some hold signs showing that they have marched on to a new grade or even a new school. They've made their own decisions about what to wear, how long or how short their hair will be, if they will buy or bring their lunch. They are growing up, moving on and walking ever faster to the future God has set before them. And I am all at once, thrilled and heartbroken by the fact that we are forced to loosen our grip on the children He gifted us.
Most of us get to feel all of these conflicting feelings this week. And we're blessed beyond measure by that. This year, I have a new perspective. A year ago this month I first met with the Kyle's Kamp Committee to offer myself to the cause for Childhood Cancer. I sat at a table with Sandy Rupp who had lost her boy to brain cancer a mere six weeks before our meeting. I sat with Rob Hahne whose son was in his third year of battling leukemia. And I began a journey in understanding how very, very differently they must look at the first day of school.
It is not my aim to make us parents of healthy children wallow in guilt if we forget to appreciate every minute of every day. I try really hard not to come at this cause with anger toward those of us who are just living our lives and feeling our feelings as they have been given us. Our emotions as parents, no matter what small or large events are happening in the lives of our children, are valid. Our experience is ours alone. God gave us our own path and our own crosses to bear.
So today, I'm going to go ahead and have a really good cry like I always do. At the same time, I'm going to feel great relief and profound joy that I won't have to hear three squabbling boys tell completely different accounts of an argument, knowing that truth of the situation is always elusive - lost somewhere in the middle of the fray. I'm going to worry about whether or not they have friends in their classes. I'm going to wonder if they remembered that I told them to find the kid who is alone at lunch and to sit there. I'm going to hope that the spelling words won't come home until next week. I'm going to fret about the pressure that AP World History and GPAs and trying to shoot birdies on the golf course puts on a child who I am SURE was just reading The Very Hungry Caterpillar yesterday.
But in the midst of my focus on me and mine, today I will be mindful of parents who are breathing huge sighs of relief that their children are headed to school and not into radiation treatments this morning. I am rejoicing that Kyle H. who finished leukemia treatments just months ago is back at school and playing baseball this fall. I am thrilled with the fact that Tara S. finished her brain cancer treatments not long ago and gets to start school with a mouthful of new braces on her teeth. I am giggling at the photos of Little Miss Sabrina and her bouncing curls all dressed up for preschool since she was declared NED (no evidence of disease) in her last scans. These are great successes in the world of childhood cancer.
Unfortunately, this is not the experience of way too many others in our community. There is a group of high school freshman that will walk the halls of their new high school without one of their buddies. There will be an empty chair in a middle school classroom because the boy that should be there, wrapping his head around an algebraic equation, will be going to the clinic to see if he needs a blood transfusion today. Another boy will be spending what should be his first day of fifth grade in a hospital receiving chemotherapy to continue a fight he began in Kindergarten.
All moms and dads should be able to fight back tears as they watch the school bus drive away. All moms and dads should get the chance to fill out the mountain of forms that come home in the first day packet. All moms and dads should be wringing their hands in worry over how on God's green earth they are going to pay for college.
Our children need to grow up and move on and become bigger and stronger and smarter. Their families need them, their schools need them, the world needs them. This is the way it is supposed to be for all of us and tragically, it is not.
Growing older is a gift that not everyone gets. Unfortunately, I don't decide who gets that gift or how many days they will get it. What I will decide today is to remember that each new classroom, each new bus stop, each new notebook full of blank, white pages is a blessing I have not been promised. I do not know how many more first days of school my children will be given.
So I'll feel all of my feelings today. I'll let my tears spill. I'll smile at the silence. And then, I'll get on my knees and say thank you.
Kyle Hahne on his way to his first day of 5th grade.
*September is Childhood Cancer Awareness Month. Please go to the Kyle's Kamp Facebook page to find out about some amazing events you can attend to support kids fighting cancer.*
Connecting at the Clinic
Very often on my own blog, I gather up my thoughts by writing a Daybook. It's a writing exercise that basically provides prompts including I am thinking, I am wearing, I am wondering, etc. I started a Daybook post last week and got to the line prompting me to list what I am learning.
It is true that there are lessons to learn in every day, in fact, in every hour, no matter our age, our education, our IQ. I'm learning lessons far more difficult to learn than algebraic equations and scientific formulas. Everyday in every situation, I still have so much that I do not know. Some days it is just realizing that the learning curve on how to get grass and dirt stains out of white baseball pants is very . . .well, curvy? Some days it's learning that people, including me, make mistakes and while grace and forgiveness are hard to give, they are necessary and they are healing. Some days it's learning yet again that if I don't want to wake up with a tummy ache I shouldn't eat three sugar cookies for dinner.
And then there are the lessons God is teaching me about life and perspective and love and grace and faith through my work with pediatric cancer. Lessons that many days stem from questions that are ongoing and frustrating and seemingly without answers.
One of the newest endeavors for Kyle's Kamp is a monthly clinic visit. We come up with a theme and bring crafts and snacks to share with the children receiving treatments that day. I revel in the coloring and the glue and stickers because back in my early mothering days, the Skinner boys generally lasted about 3.5 minutes at the craft table. I jump at the chance to do art work and play board games. We chat with parents. We play "make dinner" with a little boy who puts a banana in the pretend coffee pot in the pretend kitchen. Kids come in and out and all of their names make it to my prayer list and take a place in my heart. And I try to imagine as they scoot in with IV attachments or skip in with ports or wheel over in chairs that there is not madness happening among the silliness of making "banana coffee" and not darkness happening among the glitter and jewels and brightly colored stickers.
I try to hover in happyland and distract a three year old with Thomas the Tank Engine trains as medicine is injected into his port. I try to ignore hearing the words Zofran meanwhile silently begging it to do its job to ward off nausea so that a five year old can join me in reading Dr. Seuss. I shut my ears to little ones crying as medical tape is ripped from their young skin. I say a prayer for each of them and I convince myself that I will walk the path God has chosen for me that day with ease and comfort and a measure of detachment and pretend.
And then. There is always that one. There are the ones who I know as soon as I glimpse them. My heart will bear the scar of this one. This one will take up residence in my very soul. Only spending just a few minutes with this one will cause me to fake a need to go to the bathroom where I will grasp the edge of the sink and squeeze my eyes shut to force tears back into their ducts. This one will bring me to my knees in pleading prayer on the cold, tile floor of the restroom. I don't want them to tell me I have to leave. I don't want them to tell me that I can't handle this. So, I get up off the floor and I check my eyes in the mirror and take a deep breath. My God is big enough for this if I am not, I tell myself again. He will make me bigger. My God is sure enough to handle it when I question Him and rail at Him and ask Him how everything in this place can possibly be happening. He can handle all of my doubts and all of my anger and all of my tears about that one little boy who is now part of my heart.
That one had rolled into the art room in his wheelchair wearing a Pittsburgh Steelers shirt. Though he didn't have hair, I knew he was fair haired like my boys. My first thought: Well, this one? He could be mine. Is it because there is something in the shy smile that reminds me of my Kyle? Something about the little nose that reminds me of my Drew? Something in his humor that reminds me of my Joe?
His smile is infrequent, but wide and bright. His blue eyes are soulful and mature past their age. A smattering of light freckles cross his nose. A pink bandana is tied in defiance around his bald head with the logo shouting Cancer Fears Me. In both his looks and demeanor he could be any one of my three boys. He is reserved, but polite. He is intense, yet easy to be around. He is quiet, but engaging. Perhaps he is a little angry. For certain, he is tired. Absolutely, he should be both of these.
After he takes care of my friend, Randi, in numerous games of Connect Four, I take my place across from him and make no mistake, I intend to win. I concentrate and look him deep in the eyes telling him that I didn't even let my own kids beat me at games, even when they were preschoolers. No mercy. He goes on to beat me about 15 times, finding ways to create four in a row that no one else in the room notices. Later he leaves for another area of the clinic for some other procedure, something I do not want to know about, nor have the right to ask about, so I breezily wave good-bye, sigh deeply and turned to see who else might want to color or play or pretend.
Later that night Drew falls asleep on the way home from our after-practice dinner out and I drive a little more slowly home. I sit in the car an extra few minutes in the driveway and watch him sleep. I turn up the radio and count his breaths in and out of lungs clear of tumors. I thank God for his full head of hair, his two strong legs that run and jump and hang over the side of the seat, his little feet growing bigger and almost now touching the floor board. I think of my new friend whose face takes shape in my mind's eye right next to that of my healthy, vibrant child. I know what God is doing here.
He's telling me it's okay to be mad and it's okay to not understand. It's okay to feel ill equipped to handle these new tasks I've taken on and it's okay to wonder if I can do this because really who can handle this? Really, who in the world? These nurses are handling it. These parents are handling it. These children are handling it. They have no choice. I found that I have a choice. I can realize that I can't make everything perfect, that I can't fix things and that there must be some acceptance, though frustrating, that knowledge is finite this side of heaven.
For me the most important lesson that God is showing me in the moment that I watch Drew sleep is that guilt for my healthy boy is misplaced. Gratitude and obedience are the only two responses He requires of me. Being gratefully obedient to His call to be a wife, a mother, a friend and yes, a girl who sits and plays with trains and makes crafts and jokes across table as she loses at Connect Four again.
I will follow Him in grateful obedience knowing that the children will take place in my heart right next to my own. My heart will be full and also will bear bruises and scars. And the questions will remain. I will always keep learning, if not always finding the answer. Some day I will know it. I will sit at His throne with all those who found out the answers before me and some of those will be children. I think there is knowledge to be gained there that no human mind can comprehend. There won't be a learning curve. It will just be known. I'll know the truth - the truth that Gavin and Gabriella and Ben and Shayla and Michaela and so many others already know. And we'll all be free. Until then I'll keep learning lessons, bearing scars, pleading miracles and I'll absolutely, positively work on my Connect Four skills.
Alex, next time I'm at the clinic, I'll meet you at the craft table for a rematch. Bring it, buddy.
If you would like to help prepare and/or donate supplies for Kyle's Kamp's Clinic Visits, please contact Randi Gladstone at email@example.com.
About a Boy
There are a few reasons I got involved with Kyle's Kamp. My husband went to high school with Rob Hahne and played ball with him. My oldest boys took hitting lessons from Rob. My littlest took his very first baseball clinic, "The Bambinos", with Kyle Hahne when he was four years old. We followed Kyle's journey after he was diagnosed with Leukemia. We prayed for the Hahnes and my boys' teams played in the last two Memorial Day tournaments.
Then there was Gavin. I've written about Gavin. Countless times. I wrote about lots of things before Gavin and I've written about many things since. I will continue to write about things that move me whether it's a quote from my pastor or the new JCrew catalog or any other manner of things. But I cannot deny the effect on my life and my writing of the story of Gavin Rupp, the boy who was so much like my own. And the story of his family, so much like my own. And the story of the buddies with whom he played, so much like the boys who pile into my car when it's my turn to drive to practice and who have sleepovers in my basement and eat all the pancakes before I can blink.
Gavin and the loss of him. That's what made me email Rob and say, "I'm in. What do I do next?"
One thing Rob asked me to do was write for the Kyle's Kamp website. And when I write, Gavin always comes to mind. But, Gavin is not a myth. He is not a Lifetime Movie script. He was not just a boy with cancer. Gavin was a boy. He was a boy in a family with a mom and a dad and three kids. The boy had a group of friends who loved baseball. His dad coached his baseball team. His mom ran kids all over town here and there. He was smart and funny and my guess is that sometimes he could drive his mama nuts and bug his brother and sister. Sound familiar? Gavin was everyone's kid.
I wish I could just tell the story of a boy who loved baseball. I wish I could just tell the story of how he and his team were one of the top fundraising teams in the Kyle's Kamp tournament last year and how they won the chance to play at Nats Park because how cool is that? If your son is on a 13u-16u team playing in the tournament this year, the chance at that field of dreams is wide open. I wish that the story of a once in a lifetime chance to play on a major league field and sit in a major league dugout and see your 13 year old face up on the major league jumbotron was all there was to this story. Because that? That's a darn good story.
I wish this was just simply about a boy, #15, who got that chance one year ago in the 2013 Kyle's Kamp Memorial Day Wood Bat Tournament.
Gavin stole some bases.
Gavin pitched a scoreless inning
Gavin fielded balls on the same field that Ian Desmond does..
Gavin had a hit to the outfield and then trotted out there to walk on the grass where Bryce Harper walks.
Gavin got an approving nod from his longtime coach, Coach Rupp.
Gavin and his best friend shared a "Can you even believe this, dude?!" moment.
It was a beautiful sunny day that had started out rainy and dreary. Rob wasn't sure if he might have to cancel the whole thing. He labored over the decision and finally decided to pray for sunshine and go ahead as planned. The sun broke through the clouds that Sunday and Gavin Rupp - a boy like mine, a boy like yours? Well, he had himself a day. Stolen bases, two hits, pitching lights out and crossing the plate for the first run for his team. A perfect day for a boy - any boy.
Gavin Rupp did not ever play another baseball game after that day at Washington Nationals Park. Gavin passed away two short months later from brain cancer.
I'm not trying to be melodramatic. I'm not trying to pull at heartstrings. I'm not good at fiction. Honestly, I don't have to consult my thesaurus to come up with something to make this story important.
This Kyle's Kamp Memorial Day Tournament, especially this year, is not just any baseball tournament. That day last year was not just a baseball game. It was about so much more. It was about a boy. It was about the blessing of being talented enough to steal bases and watch the ball sail into centerfield for a single. It was about the gift of a day at the ballpark that wasn't just like any other day. For Gavin and his teammates and his family, it was the beauty of the last game that God gave a ball player and his dad on the field together as his mom ignored the security guard to get closer and watched her son have a dream day from behind the lens of her camera. It was a gift before God brought that ball player home.
Gavin's team is not called the Falcons today. They are the Warriors. They are well ahead of the pack in fundraising and will most certainly play Nats Park this year again, but without #15. If your son's team gets the honor to play on that field this year, your boy could step on the grass that Bryce Harper and Ian Desmond and Jayson Werth have. He could field a ball and throw to his best friend at first base to get an out on a major league field.
Even better and even more important, this is what your boy should know about this tournament. He could walk on the same grass on which Gavin Rupp ran and fielded and stole bases in the very last game that he played because cancer stole his chance to play again. Your child can know that this tournament is different than all of the others. This tournament and the money it raises could give a child the chance to take the field again.
It will be a privilege. It will be an honor. And it will be a day he will not forget.
Just like it was for this boy. Just like it was for #15.
Photos courtesy of Sandy and Chris Rupp
The Difference Makers
Not long ago I first heard the song Difference Maker by one of my very favorite bands. After listening to it countless times, I think I've determined that the songwriter is being a bit sarcastic. There are many who love to shout their achievements at the top of their lungs, who claim to be the "friendliest of friends of God", who take more credit for their talents and their influence than perhaps they should.
I believe that God gives people their gifts. That God chooses people to put into certain situations and that God works to help us help each other. And there are those that do that work humbly and graciously, never asking for accolades or seeking the spotlight. I have been privileged in recent months to meet some of God's most humble servants. That's why when I hear this song I think of some of the truest examples of difference makers that I have ever met: the nurses and staff members at the Pediatric Cancer clinic in Northern Virginia. They would, I am sure, be reluctant to proclaim themselves "Difference Makers", but that is what they are. I am certain that all of them wake up each day just going about the work of doing the best that they can. But I am also certain that God has put them where they are to make a difference in the world, even if that difference is in the very small world and sometimes all too brief life of a child.
Back in December I wrote a post about my visit to Children's National Medical Center and how impressed I was with all the doctors, scientists, researchers and generally giant-brained folks with whom I was able to spend the day. As a mother, I know that if my child had cancer I would be clinging to these people, relying on them to be the ones to keep my child in the here and now. These individuals are remarkable. They are relentless. They are oh-so-smart.
When we talk about raising money for Childhood Cancer, make no mistake. We want answers. We want treatments. We want a cure. And 80% of funds we raise will go to that effort. This cure, this future of eradicating this horrible disease? This is where we want to be someday.
But there is the reality of where we are. When I walk into the clinic or the hospital I am not only among sick children. I am among princesses and fairies. I am among athletes and superheroes. I am among children who want to play and hope and dream. And I am among amazing people who are tasked with making all of those dreams a reality - not tomorrow, not next year, but right now in the midst of a childhood so rudely interrupted.
In addition to the amazing nurses, the hospital and clinic employ child life specialists, psychologists, social workers, music and art therapists, all of whom work toward supporting the whole child in their journey, ensuring that their childhood remains full of play and fun as much as is possible.
They might not talk in terms of t-cells and antibodies and words that are scary and wondrous all at once. They speak in less complicated terms, although to be sure, their jobs are not simple. Their education, their work ethic and their knowledge are not of a garden variety. They are remarkable. They are relentless. They are oh-so-smart. And they are absolutely crucial to the healing of a child.
As Amanda Thompson, the Medical Director of Patient Support Services, says, "We want our patients not just to survive their cancer, but to thrive in spite of it."
In December the nurses opened up a gift shop for the patients to "shop" for their siblings and parents for holiday gifts. I was told of one day when a little girl was too sick to make her ballet class. That day, all of the doctors, nurses and other staff members dressed in tutus and held a ballet class at the clinic. Last week we helped with a Dr. Seuss Day where we read books and gave out treats. There was painting and coloring and creating beaded necklaces. Future plans include a Kentucky Derby Hat making day, an Ice Cream Sundae party and a Carnival Day.
All of these people are well trained. They are professional and smart and highly educated. And I have a confession to make. When I first was going to meet with some of these folks to talk about how Kyle's Kamp could help them, I expected something different. I thought they would be able to turn off their emotions and would be able to steel themselves to the tragedies they see. That they could leave their work at work. That perhaps each patient was like a client. I wanted to imagine that they could compartmentalize their work. I wanted to imagine that they could ward off fear and grief. That their pain was lessened because of their capacity for professionalism.
I think I did that because when I looked at the ripples of pain brought by the loss of a child, I wanted to imagine that there were less scars left behind. I was wrong. I have spent some time of late with these people. Who watch children suffer. Who sit patiently with parents whose terrified eyes plead their help and beg their hope. Who welcome new patients with open arms never knowing how long they will share their lives with them. Who lose not just one child, but countless children.
They paint pictures with them. They string beaded necklaces with them They sings songs. They read books. They tease and giggle and smile. They go back each day and meet another child, all the while putting their hearts out and practically asking that child to give them a new scar. These people don't go to work and punch the clock. They love deeply. Their eyes fill when they speak of the children they have lost. They pray and they cry and they grieve.
And despite the losses they experience, these people don't want to stop showing up everyday. And to do that they need our help. The psycho-social positions like these are funded exclusively through philanthropic means. These difference makers need organizations like Kyle's Kamp and many others to keep doing the work that God has tasked them to do.
Please watch this video from Children's National Medical Center and if you are able please donate to Kyle's Kamp so that we can help all of these children thrive along their journey to survive. And while you say a prayer for sweet Rylie tonight, please remember the nurses, therapists, psychologists and social workers who cross her path each day. Please pray for the Difference Makers.
Jennifer P. Skinner
Redefining the Victory
I've found that working with Kyle's Kamp over the past ten or so months produces lots of feelings and lots of thoughts in a gal who was already a little too feely-thinky. Sometimes these feelings are compartmentalized into one hour on a particular day or one day in a particular week and sometimes they all crash into me in giant, unrelenting waves over the course of many hours and many days.
This last week of February was one of those when the waves just kept on crashing. I've been feeling lots of feelings and thinking lots of thoughts since Saturday. I've been feeling anger and fear, sadness and grief, confusion and frustration. And I've been thinking about things like battle and struggle, heroism and bravery, perseverance and hope. I've been wondering if I'll ever see the triumph in this fight that I've joined. In the end, I've arrived at today, determining that I must find a way to redefine words like courage, champion and ultimately, victory.
Saturday and Sunday the waves came in and pulled all of us who volunteer in this community under for a bit. I didn't realize it at the time, but the stomach flu jumped in on me as well and helped to pull me even further under which didn't help my mindset. Then just as I was steadying my feet from the weekend, Tuesday came and knocked me down again.
Saturday morning as my son's basketball game was winding down, I got a text from a friend informing me that a boy I had been praying for had gotten the results of the scans he had undergone earlier in the week and that the news was not good. His tumors had not disappeared. His tumors had not even stayed stable. His tumors had grown.
I hurriedly took off from the gym waving quickly to my husband and tried desperately to get to my car before the tears spilled. My husband called before I was far out of the parking lot to see what the problem was and after telling him the news, all I could squeak out was the thought that kept running through my head:
It's too much. It's too many. This is just going to keep happening.
I crawled under my covers for the rest of the next couple of days trying to recover from whatever had taken over my body and it wasn't pretty. Then news came Tuesday evening that a neighbor, a father of a boy just my boy's age, had passed after a brutal battle with cancer. Sleeping fitfully that night, I felt so much anger. I felt so much sadness. I felt fear and confusion. Though they're not enjoyable, all of those feelings are fine and appropriate for a week such as this. But shamefully, the overriding feeling of the early part of this week was the one feeling I cannot afford to feel, at least not for very long. I felt utterly and completely defeated.
Then Wednesday came with a meeting about the Diamond Dreams games. And today came with a visit to deliver blankets to children getting chemo treatments and a lunch meeting to firm up details for Casino Night. And as I looked around at the volunteers and the nurses and doctors and little children pushing their IV poles, I remembered two sentences spoken by To Kill a Mockingbird's Atticus Finch.
"Courage is when you know you're licked before you begin, but you begin anyway and see it through no matter what." and also, as important, "It's not time to worry yet."
Feelings of defeat are going to be hard to ward off in this fight. But there is no room to feel defeated. Not for long. It's not time to worry. It's not time to surrender. It's time to look at victory differently than I have in the past. The champion rarely finds the podium without having suffered some scars.
In The Fault in Our Stars , John Green writes "the marks humans leave too often are scars" and "you don't get to choose if you get hurt in this world, but you do have some choice in who hurts you."
These patients, these parents, these nurses, these doctors, these relentless volunteers - they are bound to leave me scarred. Anger, frustration, sadness, fear - these feelings will leave me scarred. But scars are no sign of defeat. They are signs of a life lived with purpose, with people and with love. And these people are so very worth the hurt I felt this week. As I move toward the victory. I might have to acknowledge that I might not see a cure for childhood cancer in my lifetime, but I will not feel defeated. I will redefine what victory looks like.
It looks like businesses donating hundreds and thousands of dollars to a silent auction. It looks like baseball coaches throwing their sweatshirts and caps off and putting on "business attire" for a night. (No tie required, boys.) It looks like nurses coming together to offer scholarships to the children they have cared for who make it to college. It looks like teenaged baseball and softball players dedicating a game to a cause that is greater than their win-loss record. It looks like a little curly haired girl being declared NED (no evidence of disease). It looks like a boy accepting bad news, but packing his bags to travel to another specialist in another state with a smile on his face and hope in his heart. It looks like "our" one and only Kyle, of Kyle's Kamp, looking strong and healthy as he gets his port taken out at the end of a three year course of treatment for leukemia.
Though children will leave and parents will grieve and our hearts will bear the marks of this difficult battle, I will still look for small victories because I know that victories do not always appear the way my culture tells me they should. My very faith testifies to me that scars are in no way indicative of defeat.
I remember the God to whom I have given my work and my life. I remember the ultimate victor, the One who conquered all the world with humility and love and forgiveness. He had scars on His hands and a slash in His side. Though broken and bleeding and bruised, there was no greater champion for humanity. He did not claim victory with a shiny gold crown and flowing, elaborate robes. He conquered the world covered with sweat and tears and blood. And He won the victory for me.
There will be a victory for me and for all of those whom I love and for all of those whom I will meet on this journey. It will come at the end of a hard fought battle. It will come with scars. But it will come.
To join Kyle's Kamp as we move toward the victory, please check out our links for Casino Night, Diamond Dreams and the Memorial Day Tournament above.
And while you do that you can listen to my very favorite song about victory right here and send up a prayer for our friend, Mathias. Fight on, buddy.
Jennifer P. Skinner
A Shift in Perspective on a Snow Day
Last Wednesday, after two full days inside, I finally took myself and my boys out of the house and into the 15 degree weather to grab an early dinner with my friend, Nancy and her family. As we sat at the table waiting for our food, we received the news that school would be cancelled again Thursday and yet again Friday, making it a full Snow Week of kids at home, cancelled meetings, cancelled basketball practices, cancelled bedtimes and cancelled routine and schedule. I have a touch of the OCD going on and love me some routine and I despise me some cold. So this is what happened when Nancy's giddy daughter told us that there was no school for the rest of the week.
Oh, the drama. I can't even lift my face out of my hands. PA.THE.TIC, right? Do you want to slap me? Don't worry. I got that slap later.
Now, my despair was not all about the kids being up in my grill all day because due to the endless Madden 2KWhatever, they are quite busy turning their minds so into mush that they forget they have a mom to bother. My problem is a lot about claustrophobia and a Texas gal's fear of driving in the snow. It's about the fact that there is plenty of fish and chicken and vegetables in the fridge, but Miss Whiney(uncomfortably tight) Pants decides to equate snow days with chili dogs and nachos. It's that darn treadmill in that darn basement and how I need pavement under my feet and real air in my lungs.
But if I am honest, it is also often about those darn kids. It's about the arguing and the snow boots and the clothes strewn about. It's about the fact that this one likes cheese on his sandwich, but this one doesn't and this one left his cereal bowl out making a milk ring on the table and this one ate the last cookie and this one or that one (but no one will admit which one) got chocolate on the new couch. It's about my guilt that I should be the mom who makes snow ice cream and homemade hot chocolate, but I.just.am.not.
Do you see? It's, as usual, all about me. It's about me and my comfort and my routine and my time. It's about me missing the blessing right in front of me. It's about me forgetting my promise to Gavin Rupp to look hard for beauty every single day.
And I knew that I would forget. And I know that I will again. And I think Gavin knows it and God knows it. And I will not beat myself up about it too much because I can ask myself What would Jesus do? all day every day, but I am not Him. (And neither, by the way, are my children. Y'all, they're just so darn loud.) But, that's okay. We just have to get a little switch in our viewpoint, dust off and try again.
And that's why my work with Kyle's Kamp is a blessing . . . a virtual snowball of perspective to the head, if you will.
After dinner Wednesday evening, I attended a meeting of representatives of six local pediatric cancer organizations. And within minutes it was if my mom came in and said, "Child, I'll give you something to whine about."
I, the sniveling, selfish, slightly bloated mother of three currently healthy children, sat next to a man whose sixteen year old daughter died of cancer a few years ago and who would give his arm (actually would cut if off - he said so and I believe him) if it would make one of the other parents in that meeting or any where around the world miss out on having his new perspective on life. He would go out in the freezing cold in shorts and a tshirt if he could spend an hour in the snow with his daughter once more.
I sat across from a man whose ten year old daughter died less than three months ago. A man who, I am quite sure, would pour chocolate all over his couch and then figure out how to make snow ice cream and throw that on the couch, too, if it would bring her back.
Next to him, sat a woman who would wake up the next morning to bundle up her three year old to get on a train to New York's Sloan Kettering for an MRI to determine whether her baby's tumors had stayed stable or grown or perhaps vanished. How about that little wrench in the routine?
A few down from her, sat a man who has been traveling the country visiting doctors and specialists with his twelve year old, all the while supporting his boy as he learns how to use a prosthetic because cancer took one of his child's legs.
At the head of the table, sat a man who would the next day make the same trek to the clinic for his son's leukemia treatment that he has tirelessly taken for the past three years whether it be in snow, wind, ice, hail or blinding sun to fight a disease that came out of no where to turn his life into something he never knew it would be. As this would be his son's last treatment, it would be a day of relief and celebration, but I was sure that the happiness of that day would hold an undercurrent of unshakeable fear that the possibility is always looming that the cycle might someday start all over again.
I stared across the table at the seat that might have held my new friend, but sat empty. I know that this friend had spent her week juggling work and kids home from cancelled school. But this friend, would all the while be trying to mother her children while fighting off waves of grief that threaten to drown her. This friend had only two pairs of boots dripping dirty snow on the floor when she should, she just absolutely should, have had three pairs. I tried to push back the thought of how desperately non-routine were these days for her. The first snow days without the big brother. The first snow days managing arguments among two and wishing desperately for that third voice, so brutally absent from the chaos.
I looked out at the street lamp's light glimmering on the snow that I had sighed and scoffed about that morning. And I recalled a line fromThe Fault in Our Stars, a book I am reading about two teenagers battling cancer:
"People always get used to beauty."
And God's still, strong voice spoke to me through those many still, strong, voices of the parents in that room saying, Do not get used to the beauty. Do not let it slip away unnoticed. Look at it now. Appreciate it now. Do something now.
So today I will start making calls to pester high school baseball coaches about our Kyle's Kamp Diamond Dreams Night. And I will get out of my comfort zone and try to solicit donations to the silent auction for our Kyle's Kamp Casino Night. And I will annoy my Facebook friends by filling up my page with information on various ways to raise as much money as possible to find some sort of beauty in the ashes of this heartbreaking reality of childhood cancer.
And those are important things to do, but more than that, at least today, I will not get used to the beauty of all three of my boys' boots stinking to high heaven in the foyer. I will not get used to the beauty of boys' giggling voices floating into my room at midnight even when I have told them to shut.it.down twenty-five times. I will not get used to the honor of pleading for God's presence to embrace the broken and grieving parents I have met in the past several months who are desperate to see His hope again. I will open my eyes and my ears and I will bundle myself up against the cold wind and I will remember that this life is unsure and non-routine and chaotic and that it is good and hopeful and impossibly beautiful.
I am trying again, today, Gavin. I will pull my hands away from my face and look. I will not get used to the beauty here, friend. Not today.
Jennifer P. Skinner
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