Nothing You Could Have Said Would Be Right.

I was chatting with a well meaning person at the kid’s school today as the kids came out of class.  I was telling the kids that we were going to put up Christmas decorations and that even though our Dolly is so sick with pneumonia, I was looking forward to a low key afternoon and doing this for the first time with Dolly.

Maybe this person reads this blog, or knows someone who reads this blog, or just knows our story.  I think everyone knows about Dolly’s health issues via someone who reads this blog now.  I posted the link to this blog to FB and the whole school knows, about Dolly, and many other things.  My poor kids, they’ll probably never get invited to anyone’s house again now that everyone knows how we really live.

Anyway, I mentioned that I really wanted pics of Dolly as we put up ornaments, hung her stocking, you know, all that typical Christmas stuff.  This well meaning individual looked at me and said “You probably want all the pictures you can get, since you don’t ever know how many Christmases you’ll have.”

I nearly died.  

She could see it in my face too.  I would make a terrible poker player.  My facial expressions hide nothing, including hurt.  It hurt.  But…

It was true.

I react to being hurt by getting angry, then I shut down.  It’s not right, and I’m trying so hard not to do it this time.  During the short time we’ve had Dolly, I’ve realized that there isn’t anything anyone can say to me about Dolly that will ever be right.  It will always hurt, no matter what you say.

How awful is that?

I’m so sorry.  Having a chronically ill child is like living with a time bomb, and it’s akin to those other monumentally life changing events that everyone hopes will never happen to them, but tragically, sometimes do.  The loss of a spouse in a car accident, a late term miscarriage, a parent’s death during their children’s early childhood.  It’s tragic, but it happens.  When it does, no one knows quite what to say.

I remember working on the inpatient pediatric hematology and oncology unit and seeing the moms and dads who were just like me, who learned everything they could about their child’s treatment plan, who watched in horror as their child got sicker and sicker, who would have walked to the ends of the earth to see their baby healed.  I worked with them every day, sometimes for years.  I got to know them.  I loved them.  I still never knew what to say.  If I acknowledged it too much, it made them sad.  If I didn’t acknowledge it, it made them angry.

There was nothing I could have said that would be right.

I know that I’m just like that now.

So, just go ahead and tell me how you feel.  There’s no need to pussy foot around it.  Say what you need to say.  Love her like we love her, like every single day might be her last.  Tell us how precious you think she is.  Go for broke telling my kids how awesome they are for being willing to put their heart’s out there for their new sister.  Say whatever you feel right saying.

I might cry.  I might look horrified.  But, I’ll understand.  And I’ll appreciate that you cared enough to say it at all, even if it wasn’t exactly what I thought I needed to hear.

who loves you anyway and is very thankful for the support.  

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