Ryan was away at a work conference these last five days, and now he is home and I am so happy. Having Ryan away while the seizure diagnosis is still so fresh was a little isolating. (I’ve been so diligent about watching Joel for any sign of change good or bad on the medication, and that’s tiring and it will just be nice to have someone to share that burden with.) Plus, I missed church last week to be in the hospital with Ryan, and this week, Caleb got pink eye Saturday night and since I didn’t want to risk exposing lots of other families to pink eye, I stayed home again. I just really miss corporate worship. I have not had a chance to just lose myself in worship since Joel was diagnosed with infantile spasms, and that process, of just acknowledging where we’re at, and worshiping God with a full heart anyway is pretty important for me every time we’re in a rough season. So, I’m in worship withdrawal, and next week, it looks like we’re really going to get to go on our anniversary trip, and I am so excited, but it’s hard to imagine another week without being in church surrounded by people who love God and love us.
Joel had no seizure Saturday morning, and I was very excited, but this morning he had two sets of seizures, both of which seemed to really frustrate him. He acted like he was in pain, and he lost his balance each time his head nodded, and even just from a kneeling position on our bed, he fell completely to his face with each nod, until I had to just hold him laying down next to me, to stop his frustration. Even laying that way, he clapped his hands forcefully while crying and then rubbed his hands like they hurt. He winced when I touched his side, and really cried out if the blankets touched him. I don’t know if these seizures were worse in some way than the ones in the past or if there was some other reason he was so frustrated. Honestly, I don’t know if Joel was just frustrated or if he was in pain. It was a tough morning.
Joel’s seizures have never lasted longer than thirty minutes. Yet, while he is having these seizures, especially when he is confused, angry and maybe even hurting it’s hard to trust that they really will stop. My head knows they always stop, but somewhere in my heart is a fear that says, “what if this time, it doesn’t get better?” This is exactly what our life has been like for the last 30 months. For long stretches of time, things go pretty well, even having a son fighting terminal cancer, we often feel like things are pretty under control, but then the shaking starts. We get some new symptom, a new tumor on an MRI, a new diagnosis and we realize we can not control anything, and so we wait, confused, angry and hurting for the world to stop moving under our feet. Over and over again God has stepped in on Joel’s behalf, and He has been our sure foundation, He has put our hearts right. We know that He has always been faithful, and we have seen again and again, even when things looked the worst, that God was still in control, especially when we could control nothing. I believe that Ryan and I both trust completely that no matter what we face, God will be faithful to us, He always has been, but we are human and as flawed as God is perfect. Our faith is as weak as we are, and there will always be a part of me watching the clock, wondering if this is the time things won’t get better.
I love that God proves Himself faithful, not because we have so much faith, but because faithful is who He is. If there is one thing that has come to my heart again and again this week it is just that God said, “I am.” I’m not sure why that’s comforting, I feel like my spirit has an understanding of the importance of that statement that my mind not only can’t articulate but doesn’t even begin to comprehend. With any new diagnosis a million new questions rise to the surface, questions about the medication, short term-side effects as well as long term-prognosis, but also the impossible questions of “What if?” as we just try, however feebly, to unpack what this new infirmity for Joel might mean in terms of his quality of life, not just right now, but for years to come. Normally I evaluate each question, I try to look at each concern logically and process what I can, and ask more about the things that can’t be logically set aside. I normally take every worry or doubt one at a time until I feel sure I’m past them, but for some reason, this time around, as all the questions come, I just think “He is.” Somehow, it’s enough to just know that God is. Have we made the right decision in how to treat Joel? God is. Could these seizures have been happening longer than we knew? God is. Could everything still really be ok in the end somehow, even now? God is.
My mind does not understand why that is an answer. My mind wants to say “God is what exactly?” My brain wants to scream out, “Those two words are like an unfinished promise, I am, they just hang there in the air, begging for something to fill the emptiness, to qualify the statement, and anyway am is a preposition, you can’t end a sentence that way!” Somehow, despite my mental acrobatics, my spirit just gets it; I feel peace, and the question doesn’t matter anymore. The question doesn’t have to be singled ou, and answered. Even though “I am” was not really an answer, it was enough. I believe we wait right now in the middle of an unfinished promise. We do not know how the future unrolls from here, but we know that God is. That may be the only answer we have for a long time, and my spirit can rejoice in that, and my mind, well at this point, it could use the rest anyway.


There is one comment for this post.

  1. Jim Rutherford on July 23, 2012 8:57 am

    I have an evangelist friend who preaches a sermon titled “Jesus Is The Answer” and he starts out with story of seeing in a bathroom stall someone having scratched on the wall “Jesus is the answer” and under that someone writing “What is the question” and under that someone had written “It doesn’t matter” – and your “I am” answer reminded me of that. I usually check Joel’s site every three or four days, but, I guess being so concerned with Katie and her problems getting into China and home, I hadn’t looked in a couple of weeks until today, but I had thought about my friend’s sermon at least once or twice a day over that time. I have so many at GSL who pray for Joel everyday, and while many are already praying against the seizures, I will pass along these updates so they can pray more specifically.

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