diabetes

Eternal spring

March 4, 2013 by Billy Coffey 4 Comments

I’m standing in front of a wall at the Kluge Center, an offshoot of the University of Virginia’s Children’s Hospital. My family and I travel here every three months so the friendly doctors and nurses can do some unfriendly things, namely poking and prodding my daughter to make sure her diabetes is still under control.

I’ve never been a fan of hospitals. They tend to be drab and dark and they have a smell that can only be described as suffering. But it’s refreshingly different here. As this facility is exclusively for children, there are bright colors and fish tanks and a huge playroom complete with a Helen, the nice lady who doles out to the patients construction paper, crayons, and plenty of oohs and aahs.

I’ve come to learn that sometimes you have to be a good actor in order to be a good father. You have to embellish from time to time. You have to sometimes convince your kids that some things are fun when they most definitely are not. Things like school. And broccoli. And coming here to get poked and prodded.

But my little girl’s a trooper. She’s tough (like her old man) and also soft-hearted (also like her old man). She must live twenty-four hours a day with a disease that has no cure and can at a moment’s notice strike, but she also wears a perpetual smile and thinks God gave her diabetes so she can write books for diabetic children. Still, it’s not fair that my daughter has to suffer through this. Not to me. Not fair that her tiny arms are bruised by four shots a day and her fingers pocked by the scars of glucose checks.

The sound of her laughter turns my head. She and her little brother are playing in the big plastic castle that is part of the playroom. She’s the princess in distress, and he’s the knight trying to save her from the dragons. My job usually–saving her from the dragons. But the ones I’m protecting her from are real.

I go back to studying the wall. Which, as it turns out, is really a window. But the view of the grounds and the railroad tracks across the street has been replaced by a better one. Taped to the window is artwork from the tiny patients who pass through here every day, many of whom are afflicted with things far worse than my daughter’s broken pancreas. Though her diabetes is incurable (and let’s all pray that will change), it is manageable. Medical science has come a long way, and I at least have the comfort of knowing she can lead a somewhat normal life. For some of the children who colored these pictures, that’s not the case. And that makes staring at them much harder.

What kind of a world do we live in where children are stricken with disease and die? Where the most innocent of people suffer? It seems so unfair. So…wrong. We all have a right to live. A right to grow and learn and love, a right to create a life for ourselves and find our God-given purpose. But that’s just not going to happen for some of these children. What’s worse is that many of them realize this.

But I’m puzzled. Confused by the knowledge that though many of them know the realities of their lives, they are still joyful. These crayon-scribbled pieces of paper do not convey a sense of despair, but of joy. These are not obituaries, but love letters to life. Rainbows of every color shoot across the pages of many. Sunshine beams down on brightly greened grass. Flowers sprout and grow in fields of golden hues. Stick figures smile and laugh and hug.

These are pictures of lives embedded in eternal Spring.

Pictures drawn and colored by children who may be dying, but who are more alive than I am.

True, their innocence may be protecting them. Many can’t process what’s happening to them and don’t feel the need to question or blame. What they don’t know can’t hurt them.

A blessing, I think, in this case. To be ignorant of life and death.

And then I spot in the middle of the display a small sheet of paper. Written in pencil are the words of a twelve-year-old girl named Sarah. Words that make me question just how ignorant these children really are, and shame me with both a smile and a tear:

“The world is a beautiful place and everyone should shut up and enjoy it once in a while.”

Yes.

Enough faith

February 25, 2013 by Billy Coffey 14 Comments

The television is largely ignored around our house for most of the day, but like all good rules it is relaxed after dinner. By then a day’s worth of school and play have left my children with as much energy as a bowl of Jell-O. Sitting on the couch and being entertained by Phineas and Ferb is all they can handle.

My daughter is generally Holder Of The Remote when I’m not around, and as my own energy level was Jell-O like yesterday evening, I had mentally checked out in the rocking chair by the living room window, content to watch the mountains rather than the TV.

I rocked as the cool February breeze blew through the open living room window, letting in the fresh air and letting escape the sounds of my daughter’s channel changing.

News: “Unemployment continues to rise across the Commonwealth…”

A preacher on the Christian channel: “…faith can heal you of your greatest pains…”

ESPN: “…spring training in full swing…”

And finally Spongebob: “I’m so cold, I can use my nose drippings as chopsticks.”

Which is where I thought she would stay. My daughter loved Spongebob.

But then it was back to the preacher: “…God loves His children and wants to prosper them…”

I kept rocking, gazing out over the porch to the mountains beyond. A slight smile crossed my face, and why wouldn’t it? My daughter had just passed up Spongebob to learn something about God.

“…He doesn’t want anyone to be sick! Disease is Satan’s doing…!”

Still, it seemed a bit odd. A bit over the top. A bit…

“You’re not healed because you don’t believe!!”

“Dang it,” I said, jumping from the rocking chair and bursting through the door as calmly as possible but not quite. I sat beside her and palmed the remote, changing the channel back to Spongebob with as much nonchalance as I could.

“How ya doin’, sweets?” I asked.

Nothing.

“Wanna watch some Spongebob?”

(nod).

“You okay?”

(nod).

But she wasn’t. I knew that. And I also knew it was too late. The damage had been done.

At bedtime when I went to tuck my daughter in for the night, I could see her tears from the doorway.

“What’s faith?” she asked me.

“Faith,” I said, sitting down beside her, “is believing that God can do whatever He wants.”

“Do you have a lot of faith?”

I’d been father long enough to know that sometimes parents must lie to their children. But I never made it a practice to do so when it comes to matters of faith, so I said, “Sometimes I do. Other times I don’t.”

She looked at me, crying. “The preacher man said I have diabetes because I don’t have faith.”

“That’s not what he said,” I answered.

“He said if I had enough faith, God would take my sugar away.”

I didn’t answer that time. Because again, I couldn’t lie—that’s pretty much what the preacher man had said.

I sat by my daughter’s bed for a long while that night, holding her hand and stroking her hair until the tears left and sleep finally came.

As I gazed down to her I wasn’t thinking about how special she was or how she struggled with her disease. No, I was thinking about how much I would’ve liked that preacher to be there to hear my daughter doubt her faith. I wanted him to see the tears he caused her to shed. And then I would’ve taken him out back and shown him what happens to adults who hurt my little girl.

The whole prosperity gospel movement is still going strong, and there are no signs that it will slow anytime soon. Check the bestseller lists. Turn on your television. They’re everywhere, standing in front of thousands of people in their thousand-dollar suits and pretty smiles, prophesying that God is just chomping at the bit to make you as rich and successful and healthy as they are.

I don’t normally rant, and I never judge. But as I sat there looking down at my daughter, I knew without a doubt that there was a special place in hell reserved for people who manage to contort God’s word to equate faith with wellness and piety with affluence.

I can understand their appeal, I really can. A God who wanted nothing more than to heap material blessings on anyone who paid enough attention to Him makes religion seem a little more palatable. A little more…human. And their theology is mixed with just enough truth to make it seem right.

But if you think it is, if you think that’s how God operates, then I’ll invite you to spend a day with my daughter.

Maybe then you’ll see that God isn’t after our comfort or our health as much as our faith and our trust.

The Why and the What

November 30, 2011 by Billy Coffey 23 Comments

If you’ve been around here for very long, chances are you’ve caught me discussing my daughter’s diabetes. Talking about it, wrestling with it, trying to find the reasons behind it or trying to find out if there’s a reason at all. It’s one of those things that can be tough to figure out if you subscribe to the idea of a loving God.

To say my daughter’s disease is a part of His will leaves a bad taste in my mouth (it’s metallic, that taste, like having pennies in your cheeks).

To say that it’s meant as a blessing tastes even worse. Come stay with her for a couple days and see if you can say that. You might still be able to, but I bet you won’t be able to look me in the eye.

But to say that there isn’t a reason at all, that it’s just one of those things because life just kind of sucks sometimes, doesn’t really sit well either. That just makes me think that it all either caught God by surprise or He just didn’t care enough to do anything about it. And as jaded as her diabetes can make me sometimes, I’m not willing to abide by either of those theories.

So I usually just keep quiet about it. I focus on making sure her sugar is the best it can be. Make sure she eats the right things and exercises and gets the proper dose of insulin. I tell myself that the Why doesn’t matter because that’s something I can’t control, that it’s the What I’m supposed to worry myself with because I can somewhat control that.

Still, that Why has a way of sneaking up. It preys on my mind. I’m sure you understand. We all have our own Whys.

It was preying on my mind last night at three o’clock in the morning. The Witching Hour, some call it. That time of night when the darkness is the darkest and supposedly the veil between the worlds of the seen and unseen thin enough that they intermingle. Her sugar had bottomed out. I was trying to keep her awake enough to drink some juice and not doing a very good job. She kept nodding off, and I’d have to shake her. That’s when the Why came again.

“I’m sorry you have to do this,” I whispered to her.

She nodded—she always nods at three in the morning, that’s all she can do—and felt for the straw in her cup.

“I wish I could make it go away.”

Nod and slurp, and I figured that if she wasn’t asleep yet she would be soon, which meant I’d have to shake her awake again so she could finish. And then I’ll have to wake her again fifteen minutes later to make sure her sugar was going in the right direction.

“I know it’s not fair.”

But not a nod that time. That time, it was, “It’s okay. We love each other through it.”

She finished her juice and curled up under the blankets again. I sat there watching her, trying to figure out if what she said was just her sleep or herself. I figured that didn’t matter.

I also figured that if there really was a reason, maybe that was it. Maybe that’s why God allows so much suffering. Because through suffering we learn not just to love, but to love more.

And if this world needs anything, it is that.

(If you’d like to make a donation to JDRF, you can click on the link to your right and it will take you to their site.)

In A Gray World

May 8, 2009 by Billy Coffey 33 Comments

I’m sitting in bed on a Tuesday night that has just become a Wednesday morning, watching reruns of M*A*S*H while sipping a strong cup of coffee. My family is tucked safely into the arms of slumber, but there will be little if any sleep for me tonight.

My daughter is sick.

Stomach ache, fever and all general malaise. Usually an inconvenience for parents of small children, but a big deal to us. Our daughter is diabetic, and anything as small as a cold can either send her blood sugar through the roof or through the floor.

The presence of a fever requires a glucose check every two hours, so to stay awake I have a stack of papers on the nightstand beside me. Hidden among the local and national news is an article from ABC News that I printed off the internet. “Researchers Use Embryonic Stem Cells to Treat Diabetes,” it says.

On March 9, President Obama signed a bill that increased government funding for embryonic stem cells, which can morph into any cell and could theoretically cure a number of diseases and handicaps from Alzheimer’s to paralysis. And diabetes.

These cells are considered by many a potential gold mine for medical advancements. They could both save millions of lives and give life back to millions.

And to this father of this child, it would be an answer to countless prayers.

Of all the traits my wife displays in her life, the one I try to emulate and make my own is what she calls the black and the white. To her, life in this world is either/or. There is no middle ground and no tightrope to walk. Either you do good, or you do evil. Either you do right, or you do wrong. You either stand with the angels, or you don’t.

It’s a way of life that has served her well over the years. If I would have followed her lead earlier, my life would be missing many of the regrets I carry every day. But as I follow her lead now, I’m working on it. Trying.

For instance: my faith states that using embryonic stem cells, even for noble purposes, is wrong. To me and millions of others, these cells are life. And to manipulate them in any way cheapens that life, which is something that happens in our society enough as it is. One of the biggest reasons why there is so much violence and hate in this world stems from the fact we no longer honor life. That it is no longer considered holy and sacred.

This is what I believe.

And yet here we are, so technologically advanced that a few tiny cells could conceivably cure my daughter’s disease. Could give her the new life that her old one was, one without finger pricks and insulin shots and keytones and carb counting.

Do you know what it’s like for your child to look at you through tears and say, “I just want to go to heaven with Jesus, Daddy, because then I won’t feel so bad anymore?”

I do. And it hurts.

Faith is supposed to take care of that kind of hurt. It’s supposed to prop you up when you feel you are about to stumble. It is supposed to be your constant. Your First.

It is exactly that for me and my life, with perhaps the one exception of the little girl in the room next to mine. Trying to live by black and white is a noble task, I think. It’s good to know where you stand and what you stand for. But it’s also a hard thing. It’s hard to live by black and white in a world clouded by gray.

Because even if I feel that what our president has done in furthering embryonic stem cell research is wrong, a part of me now has hope. And I just don’t know what that says about me.
Because the day may come when I will be forced to answer this question:

If this can cure my daughter’s diabetes, will I withhold it from her because of my faith?

Or will I grant it to her because of my love?

(this post was published as a column in the Staunton News Leader on 5/8/09)