I woke this morning to find devastating news about one of the first children I met through Kyle's Kamp. A 12 year old boy named Alex whose sweet face, bright eyes and freckled nose have taken up space in my heart is on hospice care now. The numerous treatments he has endured in a seven year battle have failed him. After spending the morning dripping tears, banging the counter top and shouting curse words at the ceiling, my soul is worn and tired. So I just slumped in my chair and read carefully the post of Alex's amazingly faithful mother HERE. Now, though my heart still breaks, my anger is quieted. And a woman whose faith is beyond all comprehension erases the doubt that threatened my soul. In Jenni Green's words:
"God is good and I know this with all my heart and soul. God is my HOPE in what most consider an otherwise hopeless situation. God is my LIGHT when the darkness suffocates everything else. God is LOVE when we need so desperately to know we are loved . . .We know what it's like to fight this fight without God and now to live life with Him by our side . . . we won't go back. God is good and His plans are far greater than we will ever know."
Yes, Jenni. Yes. Thank you for being Alex's mommy. Thank you for reminding me. Our hope is in Him. We won't go back.
Please storm heaven for the Green family.
Originally published June 2014 at www.kyleskamp.org:
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.
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.
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