Monday, November 19, 2018

A Double Anniversary of a CHD Diagnosis

One thing you may notice if you follow "heart families" is that they always remember "that day." Today marks both days of "learning" the news. Eight years ago, on the 19th of November we went to find out if Lil would have a little brother or litter sister. She would have a sister we learned. But we left this appointment devastated and confused. All we knew was that something was wrong with her heart and that we needed to be seen at UVA's Fetal Diagnostic Center asap.
The Monday before Thanksgiving was our UVA appointment. That was the day we headed over the mountain for a higher level ultrasound and fetal Echo. She didn't have a name then. I was 21 weeks pregnant. I started a blog in January to keep up with the medical details and keep families and friends informed, "We knew something was wrong and we were there to find out what. Our hope was that it was nothing complicated, serious, or life-threatening."
I remember the piano. There was a grand piano in the lobby and someone was there playing it that day. Outside the second floor waiting room was a hallway open to the lobby below and I was grateful for the beautiful music to help soften the blow as we began to absorb the gravity of new direction we were facing.
The Monday before Thanksgiving 2009 was the day the happy, blissful visions of bringing a second child into the world in an instant, were replaced with total uncertainty. Our prayers were that she would make it to birth. Please, God, let her make to it birth.
I'm still grateful there WAS hope and I will always be in awe of the miracle of modern medicine. Her heart would never be "fixed." But it could be tinkered with - amazing surgeries could bring her through her childhood. All of her life she would be a CHD Warrior...but survival was possible. And so we hoped for the survival of our child and headed into the darkness.
I find anniversaries of this nature give me cause to reflect on Gwen and her life and her death...and other untimely deaths of loved ones.
And in short what I notice the most is that I experience everything differently now, and it's not a bad thing (sometimes just exhausting, sometimes it's not good, but mostly it is clarifying and simplifying to "look through tears").
My favorite book that has been my "go to," is Lament for a Son by Nicholas Wolterstorff. Every page is so spot on for me...and I'll end this long ramble with a few favorite passages from his book (which is hard to narrow down b/c I mean it when I say I love every page):
“Rather often I am asked whether the grief remains as intense as when I wrote. The answer is, No. The wound is no longer raw. But it has not disappeared. That is as it should be. If he was worth loving, he is worth grieving over. Grief is existential testimony to the worth of the one loved. That worth abides. So I own my grief. I do not try to put it behind me, to get over it, to forget it… Every lament is a love-song.”

“But the pain of the no more outweighs the gratitude of the once was. Will it always be so? I didn’t know how much I loved him until he was gone. Is love like that?” “How is faith to endure, O God, when you allow all this scraping and tearing on us? You have allowed rivers of blood to flow, mountains of suffering to pile up, sobs to become humanity's song--all without lifting a finger that we could see. You have allowed bonds of love beyond number to be painfully snapped. If you have not abandoned us, explain yourself.
We strain to hear. But instead of hearing an answer we catch sight of God himself scraped and torn. Through our tears we see the tears of God.” 
― Nicholas Wolterstorff, Lament for a Son

“Don’t say it’s not really so bad. Because it is. Death is awful, demonic. If you think your task as comforter is to tell me that really, all things considered, it’s not so bad, you do not sit with me in my grief but place yourself off in the distance away from me. Over there, you are of no help.”

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More from Wolterstorff can be found here:

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