We are on day 5 of ECMO and all the usual rollercoaster of emotions, ups and downs, hopes and then subsequent uncertainties. We've been here before, it's somewhat familiar, and yet never becomes much easier. It's never easier to hear your child is in critical condition, never feels ok to hear your child is very sick - sicker than they've ever been. He has survived two viruses, a massive stroke, and now 24 hours of surgery in less than a 36 hour time period. He has a mechanical mitral valve for the rest of his life that may or may not work, his pulmonary arteries have been massively reconstructed, and his aorta worked on for the 8th time in his short life. His kidneys are not working very well, his heart went into an arrhythmia for the better part of the day...it just goes on and on. But he's still here, still fighting, still has an army of medical personnel fighting with him and for him, and us walking through every moment, high and low with him. I wish pure love and devotion healed broken hearts in and of itself - Griffin would be home by now.
When people ask me how I’m doing, I never know how to answer that. How do you fit a multitude of emotions that almost continuously run rampant throughout my entire being into a concise and socially acceptable response? I almost always enter into an internal panicked filter to get to the one emotion I am feeling most at the moment, and yet I almost always say “I’m ok” or something along those lines, because I am feeling almost ALL the things ALL the time - but I really am ok. There is never a moment, no matter how despairing, gut wrenching, fearful, joyous, abounding, hopeful, ect, that I am not all the other things too; or that I am not completely cognizant and accepting of the fact that this life comes with absolutely no mutually exclusive emotions. It must be that when my mom gave me the middle name of Hope it was imbued into every cell of my body, because it is truly second nature to me. I am never without hope, and so long as I have that, how can I not be anything but ok despite the rest of it? When I serve a God who is nothing but good and loving, who has a perfect design and has given us the promise of a perfect eternity, how can I not endure the temporary suffering that will only remain here in this time?
But, even with all that, grief is not tidy, linear, or easy. There are plenty of moments my heart feels too heavy, my self too broken, and the peace that hope brings is far, far too distant.
As I was listening to the forward of the book Suffer Strong by Katherine and Jay Wolf, attempting to find new found conviction and advise on how to navigate this kind of hard a little bit better, these three words hit me like lightening: "defiantly choosing joy." If those three words do not sum up the whole of my experience in coping with all of this, I don't know any others that will.
As far back as Griffin's first open-heart surgery, somewhere along the way and completely subconsciously, I determined that if I could not control and make this better, then I would be damned if I would not control how I looked at it and what I did with it. It was not gracious or gentle or natural. It did not come from a “good” or faithful place. I was angry that I had been robbed of the illusion of control, that I had been backed into literally every metaphorical corner God could come up with. I was furious that He had allowed any of it and I was simply grasping at the only thing I had left to control - my response. I was defiant about it, every step of the way. It’s pretty silly, because in my battle for control over something, He still won. Now, my defiance is not angry so much as it's determined, because this is what He has asked of me and my family, and even in the thick of all of it I can see how I have gained SO much more than I ever lost.
So, next time somebody asks me how I’m doing I’m going to tell them “I am defiantly choosing joy” rather than just ok, because no matter how many reasons I have to be every negative thing in the book, I’ve got every reason to be hopeful despite them all.
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