catapult magazine

A reason to smile

by Ryan Snuffer

The pilgrim was traveling on the road to Santiago when he was forced to confront a demon that kept showing up in the form of a menacing dog. Twice he had scared it off; however, he was warned by his traveling guide that it would return, and that it would eventually have to be defeated, or it would kill him.

This scenario is described in detail in The Pilgrimage by Paulo Coelho. I read it while I was in the hospital with my daughter Hannah. After reading The Alchemist, I decided that I liked this author. I bought three more of his books to help keep my mind in a positive direction while sitting by my daughter’s bed during these long weeks at Brenner Children’s Hospital.

Hannah, my five-year-old little girl, has a rare intestinal disorder that has resulted in years of testing, hospitalizations, and seven surgeries to date (including several minor and two major surgeries). My faith has been tested like never before. More than once, I’ve stared the possibility of my daughter’s death in the face and have backed down in fear. More recently, I have faced this fear with some measure of courage.

Over a decade ago, before I had my own family, I stared my own death in the face a couple of times. Time passed and I began to believe that it was not my time. Back then, it was both fear of death and fear of fear that I struggled with. I thought that I had conquered both. Now, as I look at my precious little girl in the eyes, I fear death again. I fear suffering again. This time it is not my own, but my little girl’s. She has suffered more in the last four years than many people will ever suffer in a lifetime.

Fear can be paralyzing. The following journal entries reflect the internal struggle I went through while watching my daughter suffer.

 

March 10, 2007

“Ok Lord, I am willing to take this little girl home and nurture and bathe her and give her whatever care she needs for the next 2, 20, or 60 years if needed. I want to be able to love her in person, not just in memory, for years to come. I want to continue to get to know her better and watch her grow and learn to love You.

Yet, I pray that if things are never going to get better, for her sake that You would take her quietly and peacefully. I trust that she will be in your arms and that You will give her care in a place where she never hurts and is never hungry.”

I spoke a similar prayer about thirteen years ago about myself. I had been going through terrifying panic attacks shortly after making some decisions to give up the party scene and follow Christ. They were so frequent and so intense that I prayed on two nights that if things were never going to get better, that God would take me right then. I really didn’t want to go; I just didn’t want to continue living with constant anxiety and fear. A few weeks later, after a day of prayer and fasting, God delivered me of my panic attacks once and for all.

Up until now, I have been afraid to pray this prayer for Hannah. I love her so much and I cannot stand the thought of saying goodbye. Besides, praying this prayer for someone else almost does not seem right. Of course, Hannah does not have the maturity to understand the significance of what she is going through. I want her to live, even if her health is not ideal, as long as she can be cared for and have some quality of life. I guess my so called “better” options are in descending order: miraculous healing; complete cure; treatment that provides a decent quality life; peaceful, painless departure. We don’t always get what we want, but I see these as Hannah’s best options. I hope God agrees.

I still pray for miraculous healing. It would be an encouragement to the thousands of people who have prayed. It would be a powerful testimony of grace to a world that needs a bit of good news from time to time.

Kellie and I had a defining moment, just an hour or so ago. While holding a frail sleeping Hannah, we discussed the possibility for the first time of letting her go. We both had tears. Neither of us is ready; yet, we both feel as if we could be very close to her departure. I also feel that we could be very close to turning a positive corner. That is the way life is. Many stories of suffering have happy endings. Many do not. We know that all earthly stories do not end the way we want. They seldom do, even when there is a lot of prayer.

So, ok God, I pray for your will to be done. And I pray that your will be one that gives Hannah a happy ending.

 

March 17, 2007, St. Patrick’s Day

A few days ago Hannah was finally able to get some relief—for now. A catheter was sent into her intestines to bi-pass an obstruction. Within three days, over 3000 ml of stuff that had been blocked from coming out for over a week, came out of her gut. By this time, Hannah’s electrolytes were also getting closer to normal so she was up and trying to be a normal girl again. Hannah’s surgeon believes that she will need major surgery soon to correct what he perceives as a damaged or faulty portion of her intestine that sometimes acts as an obstruction. Looking back at her issues over the past year, this theory makes sense. I hope he is right and we can make some real progress. She will need to be on total parental nutrition (TPN) with a central line for the next month or so to get enough strength to face this kind of surgery. Did we get lucky this time? Is God showing us something? Or is this just another distraction and false hope? I guess we shall find out in the not too distant future.

 

June 13, 2007

Well, if hindsight is 20-20, then I suppose I have a more clear perspective of what we were going through a few months ago. We spent a total of five weeks in the hospital. While there, Hannah had a CT scan, two minor surgeries, one major surgery that corrected an obstruction in her small bowel, and was put on TPN. She was on the TPN for a total of nine weeks. Now she is home getting 90% of her nutrition through a G-tube. She has much more energy and has gained seven pounds and grown two inches in height. A couple of months ago, she was near death; now she is very much alive. There are still days in which she has abdominal pain. The weight gain was a direct result of the TPN. She has not gained any since we took her off. It appears for now that Hannah will not be healed completely, but may have a decent quality of life that will require years of special attention and care. Of course we are still praying for healing and aware that things could get worse once again.

I don’t know if my faith is stronger for having gone through this experience. I’m not sure that my view of God has changed for the better. I don’t believe that I’m necessarily a better person today than I was a few months ago. I do think that I know myself better as a result of this experience. I understand more clearly what I value and what I don’t. I know that life, love, and relationships are more important than anything else.

Death is something I cannot control. Our lives are in God’s hands. Fear of death will not hasten nor will it delay its arrival. When the demon of fear charges into my life, I know that I cannot defeat it. However, I also know that I will not let it stop me from loving. After all, a good book once said, “Perfect love casts out fear.” When I love, fear retreats.

Even today, Hannah’s belly hurts. She may never know the satisfaction of eating a full meal of solid foods. She suffers. As a result, so do I. Yet, I smile because she is here beside me, doing something creative with melted crayon shavings with her mother while her little brother keeps trying to mess up her work. I smile because I can love her another day.