Wednesday, February 6, 2013

Writing Out of Control

Blogging is a strange tension. My life is far from exciting, my children are cute but deserve some level of privacy, my marriage is healthy but non necessarily fodder for blogging. I also attempt to be real. I would hate for anyone to ever read this and think I have got it all together, or that I think that I have all the answers or that my life is all rainbows and butterflies.

Eliana is learning that stories have a beginning, middle and end. If only that was so. The middle of my story might be the beginning of someone elses. What I feel is an ending might only be a new beginning in disguise. I believe we all play a part in a bigger story, that our tails are just chapters in a larger book of which we are not the author.

But some tails are hard to write about. They are sensitive or scary or just hard to find the words for. Real life is messy and not neatly summarized in blog posts. My heart is so scattered, my thoughts are fractured, my story isn't nicely wrapped up.

Jamison had a seizure last week. Wait. Scratch that. We think he had a seizure. It wasn't a full grand mal, twitching on the floor, loosing consciousnesses kind of event. It was a strange twitch that wouldn't stop and he didn't have control over. It looked like this

So off to the pediatrician we went. That alone should tell you something, that I took my kid to the doctor. He was weighed and measured, poked and prodded and referred to a neurologist  Turns out Jamison has lost weight and not grown in the last 2 months. We now have a hospital stay in our future for a video eeg to see if we can catch the behavior and the related brain waves.

Best case? It was a one time thing and we will never see it again. The neurologist said it could be a pain response to reflux. Or it could be what the call "self stimulation" which is a tick babies do because they think it is fun and it creates neurological stimulation. We might never know what it is. He might have a clean eeg and we never deal with it again.

Or not. It could be that my son is an epileptic  It could be that we will be dealing with this for the rest of his life. He could be suffering from brain damage. He could have an ugly disorder called West Syndrome. Maybe my son won't grow up to be "normal". Maybe he will struggle to do things that come so easily to his siblings, things like walking and talking and building with blocks. Maybe...

I am a fixer. I am an information junkie. We all deal with our need to control in different ways, my way is to gather as much knowledge as I can, place it in a neat box in my head and give it a label  But I can't control this. I can't help my son. I can't fix him. I can't gather more information because I don't even know if something is wrong. I am not, by nature, someone who loses herself in worry. I place high value on competence, my own and other peoples, and that includes being prepared. I crave to be the author of a nice, neat book, complete with chapter titles and nice transitions.

But now I wait, stuck in the middle of a story.

I must live in today. I am forced to carry on, lean into the discomfort of a world outside of my control. I read a book and snuggle my kids. I rock my baby to sleep, admiring the fact he is fearfully and wonderfully made by a creator God who loves him more than I can fathom and has know what his life would look like even before I knew he would be born. I make meals, sweep floor, talk with friends, embrace the now.

I don't know how the story ends. No amount of reading and learning can cushion my life or protect me from the discomfort of the unknown. So I cling to a God who is bigger than today, who knows my tomorrows and will give me the strength to carry on because Love always finds a way, no matter how the story goes.


Dalia said...

Im thinking about you and praying for you. Im sure the wait to find out is pure torture. I think that is the hardest part of any situation, good or bad, the wait..tick tock..tick seems that even if you are busy, there is that nagging inside your head..that subconscious aching telling you to rethink, re-evaluate the "what if"..

I wish there was something I could do or say to help you get through this, but its just a matter of time. Time till you get the news that Jameson is just fine. Dont forget that babies dont come with a set of insructions and each model is different. Here's to a happy ending to your story..

Grand County Fun said...

Hi Gretchen! So glad you shared this about Jameson. I hope it will be some comfort to know that I (and a praying and intervening for you and your family. Been through some times like this with my kids over the course of the years - all with positive resolutions and I will be praying that there will a specific diagnosis and successful treatment if needed. Big, squishy hug to you and little Jameson. Love, Sue

Sarah said...

Praying for you and J. I can't imagine what the wait is like. Just sucks I suppose. Remember you have gone through stuff before. All the concerns about Annabelle, and she is a healthy little girl. Jamison is a tank and a trooper. And apparently eating right through bananas based on FB this morning.

Love you! Wish I could give you a big hug....and a bottle of wine ;-)

Kari Marie said...

Sorry I am just now reading this. Ugh. That stuff is so stressful. Definitely going to pray over you and Matt and Baby J. I will pray this is a one time fluke and that he'll chunk up nicely.

Love you!!

Kara N. said...

Please know that my prayers are with you all!
God bless you!