The characters in the narrative are Linford and Stephanie Leinbach and their 5 year old daughter, Tarica. The story is epilepsy.
The past week and a half their story has reached a climax with brain surgery, a procedure they've been preparing for for weeks and months. Because Tarica's seizures were unable to be controlled with medication, the decision was made to accept the only hope of a cure: brain surgery. This decision was not made lightly, and many, many details have worked their way into opening doors and bringing confirmation and peace to the monumental choice that they at last settled on.
I'm not sure why this story has gripped me so tightly. Possibly because Stephanie and I have exchanged a few emails, and in the process of her encouraging me in my writing and me allowing her to edit a project, I felt like I gained a friend. Possibly also because I have a daughter who recently turned 6 which makes every step in their story a stark 'what if' in my mind. There's no doubt too that Stephanie's writing abilities add to my interest and intrigue as I follow the pictures she so vividly paints with her words.
All those reasons aside, I've realized there is something deeper to this story that has gripped me so tightly and not let me go. It is not just the empathy of one mother for another that has made my heart heavy and brought me to tears over a story who's characters I have never met. No, what has tugged at my heartstrings and caused me to look deep inside is the glimpses this story has given me of what faith in God is all about.
You see, the surgery that required so much prayer and so many intricate little details and miracles lining the pathway to it's decision; the surgery that was entered into with so much hope and trepidation, that surgery did not go as expected.
In a nutshell, the expected process was to remove Tarica from her meds before surgery. They would then go in, open her head, place a mat of electrodes inside, then close the wound temporarily while they did some other procedures and waited for seizures. Once seizures occured, with the help of the electrodes, they would be able to pinpoint the exact part of the brain that required resection.
All went well, exceptionally well, except for one detail. The alloted week passed, and there were no seizures. Two more days went by, still no seizures. Without seizures, there was no way surgery could be completed. Even with all the collected data and all the signs pointing to where the seizures most likely were coming from, resection without seizures was unthinkable.
What crushing disappointment; what a turmoil of questions! Can you imagine the intensity of emotion as a parent? But here is where the beautiful pictures come in of what Faith is all about.
Before surgery, we were asked by Stephanie, "When you pray, will you pray that God's will would be done? Would you pray that God would be glorified in Children's Hospital? We desire these more than her healing—or at least, we are trying to."
I imagine those of us reading all nodded our heads in agreement. Yes, yes this is the way we should ask, this is the way He taught us to pray. In the midst of the agonizing waiting and no seizures, it was not quite so easy to nod in agreement. Every part of us wanted to turn our face to the sky and demand, "Where are you, God?? What are you waiting for? Why? Why do it this way?"
The characters in our story are human. They readily admitted the turmoil - the questions, the frustration, the heartache, the bitter disappointment. Still, the beautiful pictures of Faith shone through.
In the middle of the intensity and emotion of waiting, Stephanie wrote, "But sometimes people die of cancer and are crippled in accidents. Sometimes babies die before they are born. Sometimes God allows bad to happen so that good, His good, may come of it. Sometimes God says "No."
If God always gave parents miracles, there would be no need for Children's Hospital of Pittsburgh.
We've been praying and praying for a miracle. The trouble is, I had decided that our miracle would be a hospital stay like the one in February, when she seized as if on a schedule and amazed the doctors and nurses. But we don't get to pick our miracles. If we could pick, they would be selfish wishes, not miracles. God is not a genie in a lamp or a wishing well to toss in our coppers.
I still believe God has a miracle for us, but maybe our miracle will not be seizures. Maybe our miracle will be the grace to accept what looks like God's "No" and trust that He has good in it for us and for her.
Right now, my heart says that would be a greater miracle than seizures."
And later, before going back into surgery to remove the electrodes and close Tarica's head, Stephanie related this conversation with the doctor, "If you had seen this kind of abnormal brain activity in another patient, would that patient have been seizing?"
"Oh, yes. Absolutely."
"So. . . you're saying that this case is an anomaly? This is an exception to the rule?"
"Yes. There is no reason why she isn't seizing."
I took a deep breath, let it out slowly. Goosebumps swept over me.
She should be seizing, according to the medical world. She isn't.
Whenever there is an exception, a deviation from the expected, I look for God, because there is the miracle.
This morning, for a few minutes in room EP7, I saw Him and the miracle He had for us. We had everything: a history of uncontrollable seizures, multiple failed medications, abnormal brain activity, a February hospital stay where her seizures went crazy, statistics proving seizures are all but inevitable for her.
We had everything, everything but seizures. An exception. A deviation. The unexplainable. A miracle.
I looked for God. I found Him, holding back the surgeon's blade.
It is both glorious and heartbreaking all at once."
The beauty of Faith makes my heart ache.
I have struggled with this blog post. I've started it and stopped it and brought it out again and searched for words to express what I've been feeling. Even now I feel like I've used up a lot of words and still failed in my mission.
The God we call Father is the God of the big picture. His vision is not confined to a little hospital room in Pittsburgh any more than His vision was confined to the prison cell where Joseph of old found himself. It's easy for us to look at the whole picture of Joseph now and say, "How amazing! What a beautiful story of faith and how perfectly God had all the details worked out." Had we been in Joseph's shoes, confined to the view in that prison cell, I imagine our comments would be quite different. And I am sure Joseph was human, like the rest of us, and that there was a lot of turmoil and questions asked about where God was and what He was up to. It was hard; hard, hard, hard. But that prison cell was only a tiny part of God's big picture.
I guess the elusive something that has touched me so deeply is this: My life is such a small part in God's big picture. That doesn't mean that He doesn't care about me or that I'm not important. He does, and I am! What it does mean is that this present moment - this illness, this loss, this disappointment, this pain, this darkness - is not the whole picture. It is only a very tiny part of a Big and Amazing picture that the One who is in control can see from start to finish. What a transformation that realization can bring to our lives! Because of that, though whatever we are facing feels unbearably hard, it is possible to place our hand in His and accept the way He is choosing, knowing it is the only way to make the Big Picture complete.
That, is Faith, and it is pleases Him.