Tuesday, July 28, 2009

The God Gap

God's name comes up often on pediatric cancer floors. Words like "faith", "prayer", and "miracle" are part of everyday language. I admit I haven't always connect well with organized religion (Kathy is much better at that), but my faith is just as real. And these conversations are real, both about God and with God. Life is too short to waste time with words that hold no meaning.


With Tyler in the hospital, my prayers went from begging to threatening, pleading to bargaining. At times crying on the floor of the parents shower, other times screaming from the roof of the hospital parking garage.

But we survived it all, and Tyler is doing great. Sometime I just stare at him, amazed at all he have been through. I have no doubt that God was with us through this entire fight. Tyler is a true miracle.

However there is a question that has bothered me a lot. It started the day that Brad Salmons gave me a hug, and said "I am so happy Tyler is one who made it". I can't imagine the strength it took to say those words. He said them as we stood over his son's casket. Stef Tarapchak made the same statement, as I spoke with him for the very last time, both of us knowing he had only weeks to live.

So here is my question. Why does this happen? Why do miracles come and go? God does not want these kids to suffer, or their lives cut short. That concept is simply absurd. And I know these families. There is no lack of faith, or love, or fight, or determination. So where was their miracle? Why do so many have miracle cures, only to relapse and suffer over and over again? Why do so many die with the cure just outside of reach?

I know it is a big topic, but it has bothered me. And now I have a theory. See if this makes any sense.

Looking back on our experience, there were several big events that many would call miracles. However before those events, things always turned very dark. Many times hope was running out. It seemed God provided answers, but placed them just beyond our reach. It was like a large gap existed between us and the needed miracle. But then, just at the right moment, someone came along and closed that gap. This happened over and over.

If you heard these stories out of context, you would think "no big deal". But in the context of our need at the time, they were incredible. Sometimes it was information on a new drug or treatment, other times financial. Sometimes is was just a visit from a friend, a post on this blog, or even a $2 parking token for the garage. No big deal. But happening at a precise moment that provided the strength to go one more day, to narrow the gap.


I think this is deliberate. I think God deliberately creates a gap between the cure and our ability to get there. And I believe this is because the rest of us are not supposed to be spectators. We are supposed to be participants in these miracles. And I believe there is no limit to the miracles, as long as we are willing to participate.

The Bible says God gave the Israelites a promised land when they left Egypt. They had their miracle, but were afraid to fight for their land. So they ate sand and died, until a generation was willing to fight for the miracle. There are no limits. But we must participate to close the gap.

Ronald McDonald House, The Bone Marrow Registry, Make-A-Wish Foundation, PAC-2, Kids-N-Kamp, Team-in-Training, St Baldricks, Alex's Lemonade and CureSearch were all created by parents effected by childhood cancer. God could have created them at any time. What He waited for someone to participate, someone to close the gap.

And you don't have to start a foundation.

I am running the marathon to raise money for cancer research. There is a cure, but there is a gap in the funding needed to find it. I do not know how much money is needed to find the cure, but yours may be the dollar that closes the gap.


AJ's dad started a petition to get the media to focus on childhood cancer. His first target is Oprah. I do not know how many signatures it takes to get her attention. But yours might be the one to do the trick. Your signature might close the gap.

There are 11 million people in the bone marrow registry. But 70% the requests are unable to find a suitable match. Behind every request is a person fighting for life. Your bone marrow could save them, could close that gap.

Like the Bob Dylan song says, our prayers often treat God like He's errand boy, here to satisfy all our random desires. But God doesn't play that game. He demands our participation. These families can't do it on their own. We have been there. They need our support to close the gap.

You can sponsor my run, or sign AJ's petition. You can pass on information you hear about new treatments. And sometimes it's a miracle just to survive through the day. Closing the gap could be as simple as a word of encouragement.

and how about specifics...

  • Mason McLeod is hurting. There is a cure. There is an answer. But there is a gap, and the doctors can not find the answer. It is out there, and it is up to us to find it. God expects participation.

  • Zac Mason is fighting for his life. Decisions are being made between treatments at St Judes and MD Anderson. Now St. Judes is turning their backs, increasing the gap. There is an answer, and we must fight for Zac.

  • Matthew Barr continues to fight. The cancer has been held in check, but not beaten. Now insurance has cut him off. Another gap. There are solutions. God is there. But He expects our participation.


  • Rachael Tippie in now in Texas. She is fighting hard. She is doing good, but still has a long fight. We can not forget her. We can not forget any of these kids.

One night in the hospital I was reading the Book of Revelations in the Bible. It said at the end of time we will be gathered before God, and He will hand us a white stone engraved with our new name...a name known only to us. I don't know what that means, but I think it's a name that signifies all the gaps on earth that we helped close. I think that is why we are here. I think that is the purpose of this entire gig called life. To be active participants in the miracles of God. When we do, all of heaven rejoices. When we do not, all of heaven weeps. These children need our help.

"Most certainly I tell you, inasmuch as you did it for one of the least of these my children, you did it for me"

--Jesus Christ, Matthew 25


I am only one, but I am still one. I can not do everything, but I can still do something. I will not refuse to do something I can.

--Helen Keller


Dying is not what scares me; it's dying having had no impact. I know a lot of eyes are watching me suffer; and -- win or lose -- this is my time for impact.

--Miles Levin


I may have been powerless when I lost my brother to cancer, but I refuse to be helpless in what I can do to perpetuate purpose in his life, my own, and my community at large.

--Nina Levin (Miles sister)

5 comments:

Anonymous said...

You always have things worth thinking about.

Scott said...

I'm Matt's dad, Zac's grandfather. Thank you for being a friend, a mentor and an inspiration to my son. Reading your entries have given me strength when I have felt down and have helped me to keep positive during this ordeal. This post today makes perfect sense to me,
Thank you again.

Scott Mason

Anonymous said...

Kyle this website and all the information on it that you supply free for one and all is fantastic. Keep up the excellent work. And I hope your son continues to do well.

But I have one criticism for you to consider. Firstly,some background, my child died from cancer but during the treatment I prayed and prayed to God, I tried everything I could think of in this area. I always had this belief in God and despite how horrible it was I always had this underlying faith that God would never let my child die. Even at the last moment I still believed God would save my child. But God did not save my child and the truly devastating grief that I and my family suffered from our child's death is too horrible to describe. Even though it has been some time ago now, it still hurts me just as much. I struggle daily to find reason to live.

Now the point of my comment for you to consider is this. How do you think I feel when I read comments from someone like you that credits God for saving your son? Why would God save your son but let my child die?
Does this make sense to you? Do you actually believe that somehow God has favored your son ahead of my child? Do you feel that you are a more deserving person than other parents whose children die?
To put it bluntly, I find comments from parents who "brag" that God saved their child to be very hurtful, actually I find it offensive.
I find it offensive that you could possibly think that your son was more deserving to live than my child.
Of 10 parents that I know who lost a child to cancer, only one claims it was Gods will. The others have no respect for God at all now, actually most have concluded that there is no God. I would say very strongly that there is no God looking after our children. But if there is a God then I hate that God as many others in my position would agree with me.
You know what Kyle, the only thing that has saved your son to this point is the fact that you have succeeded in getting your son the right treatment. There is no God helping you and you know it. If you had faith in "God" then you would just sit back and let events take their course. But you know that you can't trust God to save your son. So please stop with the bullshit pretending that God is the reason your son is still alive. Your son nor any other child that has survived cancer is any more deserving to live than my child was or any other child that has died.

Hope you understand my point. I am sure you just never thought about what you were saying. I don't wish you any ill feeling. but just think more about what is really going on though.
Please keep up the good work!!
Sincerely,
David

Kyle Alfriend said...

Hello David-

I hope this is okay to respond to your above comment in this public forum. I wanted to respond, and have no other method of reaching you.

First, I am very sorry for the loss of your child. I have no way to understanding the loss you experienced. I came very close to losing my son, but that is no where close to being the same.

Second, I apologize for any comments that added to your pain. That is absolutely the last thing wish to do. I do not believe my son is more deserving than your child or any other. Cancer sucks on every single level. I do not believe God gives cancer or selects who survives. That concept is absurd. Every single child lost is a travesty, and no sane person (or God) could think otherwise.

You and I both question how a God could exist is a world that allows childhood cancer. I have been bothered by people who passively wait for God will fix it all. God does not fix it all. These children suffer horrible experiences. Some live while others do not. And there is no change in statistics based on faith or prayer or how “good” or “deserving” the child or parents are.

When I wrote the post on the blog, my mind was on the many people who have said just “let go and let God”. I am often criticized by those saying I don’t rely on God enough.

The message I intended to communicate (obviously I wasn’t very effective) was that we must be active in saving these kids. We can not sit back and trust God to do all the work.

You and I may not agree on God, and neither position can be proven. But we agree that no child deserves this disease. We agree that all deserve to be saved to live long lives. We agree that every one who does not survive is a horrible tragedy. And we agree that we must all act in every way we can to save these children.

Thank you for your comments, and I apologize for any way I offended you. I am very sorry for the loss of your child. I mean that, and hope it does not sound trite. I do not, nor have I ever believed that my son was more deserving. I have struggle greatly with the concept of God in this world of cancer. I do not know how my views would change had my son’s outcome been different. All I do know is that I want to work to fight this disease in everyway I can. If there is a God, as I think there is, I believe he has given me that purpose. However, if we are only here by random chance, I am still happy to spend my life fighting for that same purpose.

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