Saturday, February 18, 2017

Day 18 - Elisyn

This word . . it's such a simple word, but with such a complex meaning.  Waiting . . I feel like that is what we have been doing since we saw her precious face.  Waiting . . we are always simply waiting.  Waiting to bring her home . . waiting while she undergoes open heart surgery . . waiting to see how her body adjusts . . waiting to see if the medications are working . . simply waiting.  But this type of waiting has been by far the worst.  Because its the type of waiting where there is absolutely nothing you can do to help fix her.

So what exactly are we waiting for?  Well, as you know if you have followed along on Elisyn's journey, she suffers from pulmonary hypertension and is in heart failure.  So this wait . . we must wait for things to get progressively worse before they will start any further treatments or operate.

Some days it is hard to  wrap my mind around that, and other days I can find an amazing sense of peace with that.  Because I know that the alternative is way worse then our current reality.  And I think back to where we began . . inoperable . . terminal . . no quality of life.  And then I look at her today, 10 years old.  

There is life here . . and there is hope.  And hope is the only thing stronger then fear.  So we keep hope alive.  Because if she fought this hard to make it this far then we certainly can find peace in the wait.  So maybe instead of Hope Written, it should be Hope in Waiting.

This past year, we had to make a few more trips to the cardiac clinic than normal.  Elisyn's conduit stenosis has gotten progressively worse.  The question the cardiologist needed to find the answer to was how quickly she would need surgical intervention.  Thankfully, this was postponed just a little while longer. 

And so while we wait, we keep finding moments to enjoy this beautiful thing called life.


Andrea Olson said...

Thanks for sharing, Jaime!

LisaE. said...

Thank you for sharing. Hope is such a powerful word and waiting is so hard. Prayers as you continue to wait. Happy Birthday Elisyn!

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