(STILL NEED TO EDIT – no time now)

This is hard.

I’d be lying if I said we didn’t keep getting let down nearly every time we have another conversation with one of the doctors [And there are many]. I choose to keep believing and remain optimistic, but the whiplash of emotions is exhausting. I think the word “optimism” would be better replaced with hope…or faith. It’s deeper than A bright and positive outlook yes on the future. Yes, it includes that, but it’s deeper than that and much more complex. It’s rooted in something greater than myself, whereas mere optimism often hinges on something fickle or frail. When the area in which the optimism is focused on waivers, and it will, so does the very core of the person  so does the we are doing our best to maintain is not that which is foolish or unrealistic, but rather that which we are called to walk in as followers of Jesus.

I wish I had more time to write, and one day I will, but for now that’s why I have to suffice.

As I stayed in a previous post, when we got to CHOP last Thursday and things went from 0 to 100 seemingly out of nowhere, there was nothing I could do but reach out for prayer. There’s so much to touch on and so many things I could say that would illustrate God’s unwavering grace, but the time’s not now. To put it simply, before this happened, Emma was less fussy than when Josiah was a baby meaning she looked “fine”. The presenting symptoms were subtle and easy to miss; are primary reason for going to CHOP wasn’t even the sickness. When we got here, she begin having seizures and going into respiratory failure. The seizures were barely visible on the outside, some showing zero symptoms at all. Standing in that trauma bay watching 20 to 30 medical staff working as a single machine to stabilize and ultimately save Emma’s life left me defenseless.

I started this website to allow those an opportunity to continue to follow us along through this journey. When I sent that first text, I didn’t think there would be many more to follow. Since then, the days have been relentless.

My desire is to have more time to write as the days go on. I can’t make any promises, but I’ll try my best as I’ve learned that this writing is sometimes the best use of my spare time [however little it may be]. The processing that takes place as the words and emotions begin to organize in my mind and eventually untangle at the pen is unparalleled. As I continue I articulate these things with my voice I find everything I need to move forward.

I’ve never done anything like this before, so please be patient. I will try at some point post some of the other writing from the beginning of the journey since this begins in the middle.

Really it’s just the beginning…