Lately, I find myself at a loss for words. Even now in typing this, my thoughts seem to collect for a moment and flit away the next. They’ve been churning in my mind for a week now. Hopefully they will all come out clearly…that or you’ll at least be amused at my scatterbrainedness. (is that a word?) Buckle up. Its a longer one. Here’s the first part of “Comfort”.
It all goes back to one week ago when I was preparing to speak on a parent panel at UNC. They were hosting at two-day conference by the Institute for Family-Centered Care (IFCC). As part of this panel, I was privileged to speak to medical staff and case workers at UNC about my experiences as the parent of a critically ill child, reflect on what was positive in our experiences on the PICU, and what could have been improved upon. I’ve shared our journey many times before and at much greater length in different situations, but for some reason this time struck me differently. Perhaps it was sharing it with actual PICU staff. Perhaps it was speaking those words within the same hospital that cared for our son. Perhaps it was hormones. Whatever the reason, there was something about that morning that brought so much more detail back to memory of our time with Isaac at UNC. It left the memory fresh in my mind and strong on my heart. (Thank You, Lord, for that precious little boy!)
Then Thursday came. Around 10 o’clock that night, I was out to dinner with some great girlfriends in Myrtle Beach, SC. We were laughing, sharing stories, and applauding Ailene who had preached a strong word on Joshua earlier in the evening at Barefoot Church’s Ladies Night Out. (seriously…if you haven’t gotten a copy of her study yet – get to it!) Just as we ordered our late-night dinner, my phone rang. It was my friend, Josh Baer. “Hey Josh! How’s it going?”
His words caught me by surprise and knocked the air from my lungs with the force of a semi.
“Um…Charlie didn’t make it.”
Everything stopped. In an instant, grief washed over me for my friend as all the emotions of Isaac’s homecoming flooded back. They were so fresh from speaking on the panel just the day before. No! NO! Charlie was supposed to make it! He was supposed to have the better outcome with HLHS. The cocktail of emotions was choking. Grief, sorrow, confusion, anger. Even though I knew this was a chance for Charlie simply because of his diagnosis, I had hoped and prayed dearly that it would not be his fate. Certainly not so soon.
In moments, another emotion swept in to join the mix: guilt. Why did we get so much more time with our son than our friends? Why were we able to take our baby home but they weren’t? In a moment, I was reminded of the frailty of life and how fortunate we were for every day Isaac was with us. I still don’t understand the why, but rest in knowing:
“For You created my inmost being; You knit me together in my mother’s womb. I praise You because I am fearfully and wonderfully made; Your works are wonderful, I know that full well. My frame was not hidden from You when I was made in the secret place. When I was woven together in the depths of the earth, Your eyes saw my unformed body. All the days ordained for me were written in Your book before one of them came to be.” (Psalm 139.13-16)