Really, Really Ready?

I have hated Emmeline's g-tube since they put it in.  Really, really hated it.  I spent hours and hours crying about it to anyone who would willingly listen.  As well as plenty who weren't so willing.  I hated everything about it.  The scarring, the smell, when it would get ripped out, cutting holes into clothes, the accompanying pump and paraphernalia, the reflux, oh the reflux, I hated it all.  Don't get me wrong, g-tubes can and do save lives.  Did it save Emmeline's?  I don't think so.  Josh thinks my hate for the tube clouded my judgement and that it really did save Emmeline.   Maybe it did.  I wasn't exactly thinking clearly for several years back then.  I just know how I felt deep down.  It was by far the most traumatic surgery for me and we've had many.  It is the only one where  I had an almost uncontrollable urge to burst into the OR and grab her off the table.  I spent the whole procedure sobbing in the waiting area.  I hated it.  I never made "peace" with it.  We were never friends.

Today we are meeting with a surgeon to schedule getting it removed. After all this time, it is about to be out of my life forever...I don't know if I'm ready.  Ridiculous I know.  The fact is, I don't think it saved Emmeline's life, but could it in the future? Yes.  (I literally just cringed typing that).  I have hated it for so long.  Hated it, but knew deep down that it was a HUGE safety net.  My daughter can never starve,  she will never not take her medicine, and she recovers faster from illness.  All of these things keep her safe. They aren't the biggest problem for me though.  What is?

Emmeline loves her tube.

It's been a part of her for as long as she can remember.  It's HER tube.   When we talk to her about getting it taken out she protectively covers it with her hand and says "No!  My tube!" As someone with anxiety I can understand her reservations.  This is all she has ever know.  People are telling her she doesn't need it anymore and life will be better without it but she's not buying it.  It's all she knows.  She feels safe with it.

Being a parent is hard.  I have had to make countless decisions for Emmeline because I think they are in her best interest.  Most of the time she doesn't know.  They aren't things she sees. But she'll see this one. They are always hard for me.  I do not like making decisions.  Not even little ones for myself much less life altering ones for someone else.  I had to choose to give her the g-tube and now I have to choose to take it away.  She trusts me and I can't help but feel I am betraying that trust.  I can't help but wonder.  Are we really, really ready?

1 comment:

Marianne said...

What a hard decision! Addie's little best friend has a trach tube (she has a condition where her lungs stop working when she falls asleep), and when they've talked about getting it removed in favor of a pulmonary pacemaker, she doesn't want to, because her tube is part of who she is. I am in awe of you moms who spend your days keeping your kid alive and thriving. And making hard decisions. You are amazing.