Wednesday, October 30, 2013

Of Today: Shared sorrow & changed perspective

You know what's difficult?  Realizing Jonathan wasn't the only one.

A year ago I would have said the opposite -- feeling that he was all alone in his journey.

But since then I've come to know so many more, and been introduced to people through friends.  People whose children are also complex medical cases. People whose children have nearly died or have passed. People close to my friends have had young children with renal failure, who became dependent on feeding tubes, who have had NEC and retinopathy of prematurity.

And my heart breaks. I know they'll now understand our story, and I'm sorry about that.  It's not so much that I wish I couldn't relate to them, I wish THEY couldn't relate to us.

Sometimes I can tell what searches bring people to this blog, and that breaks my heart, too. It means another parent somewhere out there just found out their baby was to be born at 23 weeks, or had NEC or ROP or a PDA or any of a number of acronyms I wish I didn't now know.

And I can't tell them it will be okay. And I know the heartache that comes. And I wish we were the only ones that had to have faced it. I wish the rest of this world could now be done with this, that there weren't parents living at their child's bedside, there as often as possible, wishing and hoping that she or he would fight through another day, hearts on the line.

It makes me more empathetic, yes. But I wish there was nothing driving that empathy.

Life is put in perspective, yes. Another preemie mom brought that up this week. But somehow I wish we didn't have to learn perspective in such difficult ways.

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