A Rough Week

Well, it's been a week... 

We came home last Saturday and we got 72 hours.  Three whole freaking days... 

And it started again.  

I mean, those three days were amazing!  He was laughing and playing and smiling.  Getting into mischief.  We were putting him back in pants and shirts tucked in to keep diapers on and g-tubes in his belly.  (Except the g-tube had been lengthened and was often leaking, but that's a completely different issue.)

And then I fed him his afternoon meal on Tuesday, and it all broke loose.  Cue the tears and silent screams.  Spike the fever.  Complete agony.  There's nothing more heartbreaking as a mom to have your child in pain and not be able to do anything about it.  

I mean, I guess we tried.  I stopped his feeding again and started Pedialyte, but a kid can't just live on Pedialyte.  We did that through Wednesday and then started him again on half food, half Pedialyte.  I sent a message to his care team.  When his doctor called back, she recommended that we take things very slowly, a few days of half and half, and only the very basic ingredients, and then slowly expand.  

Friday night I tried to go to the high school Homecoming game.  I made it to halftime, and they won, so there's that.  But at halftime, William called and we were back to unconsolable crying and a huge code brown (kinda like a massive diaper malfunction, TMI?).  So I went home to fevers, a very sad child, and we worked to get him (and everything else) cleaned up.  More rescue meds.  Reevaluating his GI meds (again) and almost cried myself.

Yesterday was okay, and so is today.  But I hold my breath, wondering if it will continue.

Earlier on Friday I opened up Facebook to look for someone's contact information and discovered that one of our friends had died.  Little Sam also had Trisomy 18.  Another little boy, actually not too far away from us.  They live north of Salt Lake and Primary's was their medical home as well.  Such a bright, happy child, the light of his family.  I just ache.  

I still don't know why we've been spared (so far) and so many others have not.  Sam now, Joseph two years ago: both have pieces of my heart and I haven't quite figured out how to process this.  And so many, many others.  It's hard, so hard.  

So I'm sitting here in my quiet home on a Sunday afternoon writing.  I remember their moms.  Becka and I shared so many times up at Primary's.  Melissa and I didn't quite as much, but there were still several meetings.  When we went up a few Saturday's ago, Melissa waited outside the ER to greet me and make sure I was okay.  Now she's not okay, and I don't have any way to make it better.  There's a huge Sam-sized hole in their family.  It's a physical ache, a loss.  And in one form or another, will be there for the rest of their lives.  

I'm taking a crisis intervention class this semester and one thing keeps coming back to me.  A crisis overwhelms the world we think we know and shatters our conception of how things "should be."  I've said for more than 12 years, parents aren't supposed to bury their children.  It's still true, but it happens.  Way too much.  

“Grief is love with no place to go”
― Karen Gibbs,