Tag Archives for " Pediatric Cancer "

broken and beautiful

Still "Don't Know Beans about Praying"

cottonpatchgospelBack a lot of years ago, I wrote a post about the struggle of praying in the midst of brokenness. Here's an updated version for 2020.

“Similarly, the spirit also helps us out in our weakness. For example, we don’t know beans about praying, but the Spirit himself speaks up for our unexpressed concerns. And he who x-rays our hearts understands the Spirit’s approach, since the Spirit represents Christians before God.” Romans 8:26-27 The Cotton Patch Version

Clarence Jordan (translator of The Cotton Patch Version) is right. I don't know beans about praying. Prayer absolutely blows my mind: God, the creator of the universe, wants to be in communication with me? I really can't grasp that.

But I pray anyway. I pray to music. I pray Scripture. And I pray for loved ones. (Names changed.)

  • For Alma and Beatrice and Carol, homebound by circumstances outside their control in need of more comfort than I could ever provide.
  • For Denise and Elmer, Florence and Grayson, Helen and Ian whose sons died a decade ago yet the pain is new every morning.
  • For baby Jenna in the hospital and for Karl in prison.
  • For families I know--too many--born into poverty, struggling to pull themselves up by their bootstraps, only to find they have no boots.
  • For the ailing, the lonely, the grieving, the depressed, the hurting . . .

Yeah, I gotta tell ya. I don't know beans about praying.

But thanks be to God, knowing is not necessary. Romans 8:26-27 (NRSV) says “Likewise the Spirit helps us in our weakness; for we do not know how to pray as we ought, but that very Spirit intercedes with sighs too deep for words. And God, who searches the heart, knows what is the mind of the Spirit, because the Spirit intercedes for the saints according to the will of God.” (emphasis mine)

And when I read that I sigh: a sigh of relief. I sigh because suddenly I remember, I’m not alone.  I sigh, I breathe, remembering that Alma is not alone, and Beatrice isn't and neither is Carol. The Spirit is sighing with me, magnifying those sighs, translating them into words that I can't seem to find, building them into bridges from the hearts of the hurting to the very heart of God.  I sigh knowing there's a bridge for Denise and Elmer and all grieving parents and that Karl and Jenna can cross it too. And I sigh so deep within my spirit, beyond the flood of tears that chokes my heart for those living in the grip of poverty. I sigh with relief because as I do, I find that the Spirit is already there; the bridge is already built. Everyone has brand new boots with nice long straps. I don't have to find the words to the perfect prayer; because “. . .God, who searches the heart, knows what is the mind of the Spirit, because the Spirit intercedes” for me.

Even though I don’t know beans about praying.

Ahhhhh.

grief forever and eternal

Grief: Forever. And Eternal.

Originally posted July 19, 2010
You can’t miss it. If you travel that road, you will see it. Looming over the highway for all motorists to see: a billboard-sized picture of a mangled motorcycle with the ominous declaration “Death is forever.” Every time I pass it, I get the message; I never intend to read it, it is just that prominent, that unavoidable. That . . . gripping.

And every time I see that sign three faces rush to my mind: faces that are forever never-changing. Paxten, always 3 years and 7 months old—even after his younger sister turns four and then five. Matthew, staying 12 while his twin rushes into high school. Caleb, forever 11: his younger brothers eventually matriculating to grades he never got to start. And I just wonder: How can you face forever when your boy is gone?

How can you imagine a future without your child, your parents, your beloved? I gotta tell you, I wouldn’t want to face tomorrow without my beagle, much less my people, and I’m not kidding, not even a little bit. Death is forever. And it hurts. It hurts on the big days (the ones you know will be hard): the anniversaries, the birthdays, the holidays. But it hurts on the little days too: when the family gathers and one is forever absent, when you go to the restaurant that will forever be her restaurant or his, when you go to the ball field, the bookstore, the band concert. Everywhere. Always. Forever.

I hurt so much for loved ones who are bereaved; my heart screams about fairness and longing. Yet if I hurt for them this much what must it be like for the childless mother, the lonely widow, the grieving child. I can’t bear even the thought of it. And that’s because, well, it can’t be borne—not by human hearts anyway.

At that thought, my soul stretches out, finding hope within reach. Because for me, on account of my faith, while I know death is forever, I also know life is eternal. I can rest in that assurance. So, I slip my hand into the nail-scarred hand and fall deep into Christ’s embrace. There, I feel the tears of Jesus mixing with my own. There I am reminded that even when I walk through valleys that are permanently shadowed by death, I do not walk alone. And somehow, because Jesus lives, I really can face tomorrow. Forever.

"Don't Know Beans about Praying"

cottonpatchgospel“Similarly, the spirit also helps us out in our weakness. For example, we don’t know beans about praying, but the Spirit himself speaks up for our unexpressed concerns. And he who x-rays our hearts understands the Spirit’s approach, since the Spirit represents Christians before God.” Romans 8:26-27 The Cotton Patch Version

Clarence Jordan (translator of The Cotton Patch Version) is right. I don't know beans about praying. Prayer absolutely blows my mind: God, the creator of the universe, wants to be in communication with me? I really can't grasp that.

But I pray anyway. I pray to music. I pray Scripture. And I pray for loved ones. I pray for Barbara and her two boys—their husband and father died suddenly this past January. A friend who has pitiful insurance and horrific health problems. Cathy whose younger brother died way too young leaving a wife and children. Teachers whose salaries have been cut or who have lost their jobs—particularly those among them who are single parents. A loved one in a new job. My nephew-in-love who goes off to college next year and his dad who has Parkinson’s disease. Niece Rachel who is about to start her senior year. My mother-in-law with MD. And then there’s this: my friend Kim who beat breast cancer last year just before her son, now 11, was diagnosed with terminal brain cancer—the same Kim who has just been diagnosed with colon cancer. This week, her son, who was just denied access because of his age to clinical trials that might save his life, will be going to NIH in Maryland to explore further treatment options with his dad (Kim’s husband) while Kim faces her own cancer surgery back in Oklahoma.

Yeah, I gotta tell ya. I don't know beans about praying.

But thanks be to God, knowing is not necessary. Romans 8:26-27 (NRSV) says “Likewise the Spirit helps us in our weakness; for we do not know how to pray as we ought, but that very Spirit intercedes with sighs too deep for words. And God, who searches the heart, knows what is the mind of the Spirit, because the Spirit intercedes for the saints according to the will of God.” (emphasis mine)

And when I read that I sigh: a sigh of relief. I sigh because suddenly I remember, I’m not alone.  I sigh, I breathe, remembering that Barbara is not alone, and Cathy isn't and neither is my nephew.The Spirit is sighing with me, magnifying those sighs, translating them into words that I can't seem to find, building them into bridges from the hearts of the hurting to the very heart of God.  I sigh knowing my Rachel has a bridge and my mother-in-law can cross it too cause this bridge is seriously wheelchair accessible. And I sigh so deep within my spirit, beyond the flood of tears that chokes my heart for a little boy who just wants to play baseball with his brothers and for his mother who wants to watch him. I sigh with relief because as I do, I find that the Spirit is already there. The bridge is already built. The words don’t have to be found. “And God, who searches the heart, knows what is the mind of the Spirit, because the Spirit intercedes” for me.

Even though I don’t know beans about praying.

Ahhhhh.

pediatric cancer

Defining moments (Remembering Paxten--Part 2)

Becoming a big sister.

I stood on tippy toes to reach the phone, still corded. Daddy gave me the news: “It’s a boy!”

Learning to read.

The letters were right there in colored chalk. “C-A-T means this.” My sister stood beside her chalkboard, pointing to a picture she had drawn of a cat. And in that moment, I got it.

Losing a pet.

I tried to get Pickles, our Cocker Spaniel, to come back; she kept running after the car. Straddling the banana seat on my bike, I called and called to her. But Pickles never came. “Do dogs go to heaven, Mama?” and “Will I ever stop missing her?”

Falling in love.

Colors looked brighter, music sounded sweeter. Falling in love with Jay Lawrimore had me saying all the sappy things I’d groaned at previously.

Loving Grandmama.

In the end, she didn’t know any of us. No matter: loving Grandmama for better or worse gave me sweet joy and made me a better me.

Becoming Aunt Aileen.

Holding the infant Rachel—my first born niece—in my arms made everything bad in my world dissolve. Looking at her, I saw hope. (Now I have 12 nieces and nephews—12 faces of hope.)

Becoming mommy.

Nothing. Nothing prepared me (has prepared me yet) for the joy of it.

Believing beyond Meredith’s birth.

When Meredith was born twinless, my faith quivered at its core. This one was to be two, this tiny singleton sans sister who fought for her life in NICU. Praying through the questions, working through the doubt, set new roots to my faith. (Meredith—one of my 12—is all grown up now. Thanks be to God.)

Loving Paxten

He was only 3 years and 7 months old when he died on April 6 2008. I still wish the truth were a lie--I wish that Paxten still lived on, growing bigger, getting stronger. I do not want it to be true that he's gone. Yet while losing him hurt like nothing I'd experienced before, it was loving him that changed me: Love fast, Live now, Laugh anyway, Linger a little longer. I loved loving Paxten. I love him still.

Originally posted 4-6-09

Childhood cancer

Remembering Paxten, Part I

Originally posted on April 2, 2009

On April 6, 2008, Paxten Andrew Mitchell slipped from his parents embrace into the gates of heaven. This time last year, no one was talking about Paxten getting well. He was home, with his family, with hospice. I miss him.

When Paxten was still well enough to be in the hospital, I visited him about once a week. I’d come bringing fresh Playdoh® or new dinosaur stickers. (I still catch myself looking for stickers or checking for a bargain on Playdoh® before I realize my reason for buying those things is no more.) Paxten and I would stick the stickers all over ourselves and anything else we could find; we’d sculpt new creatures with the Playdoh®. Actually I would sculpt, or Amy would, as Paxten directed our efforts. We made funny faces. We wrestled—careful not to disconnect IV cords as we played. And we laughed. We laughed a lot, Paxten & I. Eventually though, I’d have to go home to my children, often leaving Amy by herself with her boy.

In the hospital bed (it seemed huge when Paxten was in it alone), Amy slept with her boy curled into her. No doubt she did all night what she did all day—checked his temperature with her mommy hands and diagnostic kisses, glanced up at the monitors to see if everything was normal (that is, as normal as it ever got for Paxten), and readjusted his tubing so he was not lying on it. . . When Paxten stirred during those long nights, I bet he had the same conversation with his mother that he had several times every hour during the day.

“Mommy?”
“Yes Paxten?
“I Wub You.”
“I love you too, Paxten.”

Guy Sayles

One Quick Question (On God and Grieving)

Originally published on December 15, 2008. Caleb Spady died on July 21, 2009, having fought brain cancer (DIPG) for 15 months.

“One quick question,” I said to my pastor. He was heading back to his lunch table with a full cup of coffee; I’d finished my lunch and wanted a word with him before I had to leave.

“Oh hi, Aileen,” he said, more gracious than most would have been, having been caught between coffee and dessert. “What’s up?”

“A lot. For one thing I just lied to my pastor." I realized in that moment what he no doubt already had guessed. “My question is neither quick nor singular.” Guy Sayles smiled, relaxed and unhurried. I forged ahead.

Caleb Spady“My friend’s son—he’s 10—has inoperable brain cancer. He got bad news yesterday, really bad news. His mother and I were talking last night, and she asked me some tough questions. I’m only in the second semester of seminary here. I have no idea what to say.”

"I’m not sure theological degrees give you the words to say under those circumstances," Guy said, speaking the frustrating truth of pastoral care.

“My friend's question was this: ‘If God is omnipotent as we believe God is, then why hasn't my son been healed?’ Good question right? So, ya know, why?”

Setting his coffee on the counter, Guy shook his head. “Well the first thing I would ask myself is, 'Is this really an appropriate time for a theological discussion?' It probably isn't. If not, I would say, ‘I don’t know. I’m so sorry. I love you.’”

I found this to be brilliant instruction. How many times do we spout off theological treatises when it just isn't the time? The person really needs to hear, “What you are going through is awful and I’m sorry that you are going through it because you matter to me.” And we start quoting scripture, telling them about God’s will or the nature of creation. Sometimes, we need to say less in order to say more.

Guy continued. “If it is a good time for a theological discussion, then I might say, ‘Well, God doesn't always get God's way.’”

He must have noticed my hesitation because he elaborated. “When people disagree with me on this, I ask them, ‘Does God always get God's way with you?’ Of course not. If it is true with one person, it must be true with others. And if God doesn't always get God's way with people, then God doesn’t always get God's way in the world. After all, if God did, then why would Jesus have commanded us to pray for God’s will to be done? It would just be done whether we prayed or not.” (Intriguing, huh?)

“But,” Guy said, “If God is omnipotent, and we are Christians, then we believe

  • God's greatest power was displayed on the cross.
  • God's strength comes through suffering;
  • God's power is in weakness.
  • We are free when we become God's slaves.
  • We are greatest when we become the least of all.

Christianity is confusingly full of contradictions. The equations just aren't as simple as we would like them to be.”

I knew he was right. But what could I tell my friend that could comfort her, if only momentarily?

“There is one simple formula, though,” Guy went on. “God loves us. God just loves us. God always, completely, beyond-our-imagination loves us.”

“So, when our hearts are breaking. . .”

“Then God’s heart is breaking too.”

pediatric cancer

Pediatric Cancer: Be Part of the Solution

Update September 1, 2015

Since I published this seven years ago, Caleb Spady slipped from his earthly father's arms into the embrace of his Heavenly Father. He passed away 15 months after his diagnosis on July 21, 2009. Many others have been diagnosed with DIPG since then. It is a cruel and horrible disease.

But there is good news. Research is being done; treatments are being perfected. Because people are becoming more aware, more funding is available for all pediatric cancers. Don't be afraid to learn about pediatric cancer. Awareness doesn't lead to cancer diagnoses. Awareness leads to hope.

Knowledge. It really is a good thing.

September is Childhood Cancer Awareness month. Each year, Chili's holds a Donate-The-Profits day to benefit St. Jude's research hospital. This year, that day is Monday, September 14, 2015. Find a Chili's that day and eat up! Just by doing that, you'll be making a difference in the life a child.

Published on: Aug 29, 2008 

Five months ago, at a huge party to celebrate a life that we already knew would be way too short, Paxten Andrew Mitchell gave me a big hug and a kiss. As he fell into my embrace, I rubbed his fuzzy head, feeling hair there for the first time in our year-long friendship. Later Paxten wrestled me to the floor and stood triumphantly above me giggling at my weakness.

In less than a month, Paxten’s fight against cancer ended at Heaven’s gate. Now my friend Kim Spady is fighting for the life of her son Caleb, a vibrant ten year old boy with a ticking bomb in his brain called a Diffused Intrinsic Pontine Glioma (DIPG).

Caleb, like his brothers, is the joy of his parents’ hearts and the pesky younger brother to Jacob and older brother to Seth and Luke. DIPG is totally random. Kim & Ken could not have protected Caleb from this monster by having the right genetic mix or by sealing Caleb in a bubble from birth. They could not have kept DIPG from attacking their son. But now they will move heaven and earth to win the fight over DIPG. (Caleb passed away on July 21, 2009. He was 11 years old.)

Surely we can all do something to stop these random pediatric cancers from ripping open our hearts and tearing out our children. Kim believes, and I know she is right, that the first step is awareness.

Would you visit one of these links and become a little more aware?

http://www.cancer.gov/cancertopics/types/childhoodcancers

http://www.pcfweb.org/

http://www.justonemoreday.org/index.html

You don’t have to become an expert. Just learn one thing. You don’t have to spend your whole night on the internet (Kim’s already doing that). Just learn a little bit. I’ll never get another hug from Paxten on this side of Glory, but one way I can honor the gift God gave me in Paxten, is to spread the word about pediatric cancers.

Join me, okay? Together, we can strengthen the hope for a cure. Because as Kim says, “One day a child with DIPG will be healed. Maybe even today.”