I can’t stop crying this morning.  Sometimes, it all just overwhelms me.  My baby boy needs open heart surgery.  I see it, more and more: He is so tired lately.  He is basically sleeping like a newborn again.  What once would have elicited joy now inspires panic: His sats were at 93 this morning when I walked into his room.  This means the pressure in his collaterals are too high.  Or perhaps his body is compensating by creating more.  Either way, it either bumps up the timeline for surgery or makes the surgery more complex.  He’s on heart medication now.  That just makes it so real to me.

I want to bury my head in the sand.

I know he can survive this.  He might.  It will be a long and exhausting journey, but it will be precious and fulfilling, and we will be a family.

But lately, I can’t shake the thought of losing him.  Arif picked out a goodnight song we have been playing for him every night before bed: Goodnight, Sweetheart, Goodnight.  And I try to not let my brain go there, but I always picture this as being the song we play when we say our final goodbye, if it comes to that.

I will not survive losing my son.

I don’t think I could ever do it again.  If I don’t get to be his mom, I don’t think I will be a mom.  And if I’m not a mom, I have absolutely no idea who I am.

I would love to tie this all up into a neat and tidy bow and put my usual positive spin on it, but I am all out of ribbon today.



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