I'll be honest - Alexis' first year is a bit of a blur. I was there, but I was certainly not present. The ache of grief that I felt lingered for most of that year. Figuring out how to care for her and the reality of what life was going to be like for her, for us, was so incredibly overwhelming.
I remember the days following that phone call. We hung out with friends and I remember sitting on the couch holding my baby girl, wishing so desperately I could just cry and scream and tell them all what was going on, but I sat silent. I felt both numb and in excruciating pain at the exact same time. The words just wouldn't come.
I've had the opportunity to share my story since then. As I sat writing out what I wanted to say, there was a side of me that wanted to start with, "I'm Amber and my life is your worst nightmare." I dwelled on those words for days before finally backspacing my way out of it. I wanted to say that because my life, my children, my story was my worst nightmare. For a good chunk of time, that's how I felt; that's how I lived. Finding out Alexis had CF was my nightmare. Coupled with everything else we had been through in the years prior; please. I was a ridiculous mess.
But even last night, as I sat in the midst of new friends hearing bits and pieces of their stories, I couldn't help but feel thankful for mine. There is something so beautiful about the way Jesus rescued me out of that pit of darkness. Believe me, there are still dark days and I know my story is far from over, but when He makes you realize that your nightmare is actually your biggest blessing, that's something to celebrate.
So here we are, two years post diagnosis and Alexis is doing incredibly well. She still does treatments and takes medicine every day. She loves Sofia the First, mommy's makeup and she always wears shoes. She loves to dance with Brother and go swimming. She is a total joy! We go to the CF clinic every three months and it's been a good while since we've received any discouraging news. I don't think too far into the future because I don't need to. We live one day at a time, celebrating every single breath.
I know. You don't know how I do it, right?
That's okay. I do.
It is only by the grace of God. It is only because His mercies are new every morning.
Maybe my life really is your worst nightmare. Maybe I'm okay with that.
God is still God. God is still good.
Where there is fear, there is faith. Where there is heartache... there is hope.