Sunday, April 17, 2016

A Saddend Heart

This has been exactly my thought and kinda the end of where all my grief always leads - that if we can love this much and love is from God -- then, wow...

"What a proof of the Divine tenderness is there in the human heart itself, which is the organ and receptacle oft so many sympathies! When we consider how exquisite are those conditions by which it is even made capable of so much suffering--the capabilities of a child's heart, of a mother's heart,--what must be the nature of Him who fashioned its depths, and strung its chords."

 -Edwin H Chapin

Today I write as I mourn two losses here, in our little CHD world.

On Friday, my shining star, the child who showed me the life Gwen could have, whose mom walked so closely with me and helped me find solid footing as I planned surgery for my unborn daughter...on Friday, April 8th, Gabe Chester died.

(These words here are not what I want on this blog. I don't want to keep typing.)

It was sudden. He was enjoying his time skateboarding. All we can guess is his heart just was done - arrhythmia struck and it won (thankfully he was at a middle school near his house and his collapse was witnessed and CPR and and AED were available quickly - and therefore all was done that could have been done).

On the following Monday, a precious 2 and a half month old baby boy, Andre Showalter, a HLHS CHD Warrior suddenly passed away.

Words fail. My heart aches for each family. I feel inadequate and lacking... all I know is each child was so loved... I know each family can all survive this loss -- but how desperately, desperately I don't want them to have to endure this type of heartahce. And there it is, the familiar limits, of being human - you can't do a darn thing about it, this is an ever expanding place -- and you can't do anything about who enters; at any time, it may be someone you call a dependable friend or some new family you've yet to meet but have cared for from a distance.

In both cases, nothing indicated any issue - both children were doing so well...

And I'm starting to wonder if that is more the norm in CHD land... "the plane falls out of the sky on a clear blue day..."

The landscape of CHD has been redrawn for me. Like minecraft creating a new map, I've landed in a completely new world. And for now, all I know to do is to keep to the task at hand, even as I don't recognize this place and my doubts are heavy and my mind weary, I will keep working here, on CHD awareness, on our new MLHSV projects and on all the tasks at hand, if only because I'm too knee deep in it and there isn't any way out now but forward.

But is there anything really we can do? Does research matter? - does God just have it all planned out and he is amused that I'm thinking anything is going to help these kids have longer lives?

I guess really, MLHSV isn't about research and I know trying to offer comfort and support and ultimately, confidence, matters -- to some degree anyway... so I'll keep at it... but the world - the landscape feels foreign and all wrong - these two families were never supposed to be over here...not here...on "this" side of things.

Ten years loom and as always seems to be the case, I find myself struggling the most in the days ahead of the anniversary  - be it her birt...