This Crazy Life

We are home for Thanksgiving!  Now we have to smell proof her room(s) or it’s not going to be a good day.  But she’s home.  I don’t have to worry about splitting time between home and the hospital.  And getting to enjoy hospital food for Thanksgiving.  I get to have my family together.  Under one roof.  Even if she won’t come sit with us or enjoy our company.  We are all home.  Her doctor’s apt Monday was pretty nondramatic.  They couldn’t get blood after sticking her twice so we’re going to go back and try that again later.  Her vitals are all low, but she’s stable enough for home.  There was a mom in the waiting room that asked me if it got easier the longer we went along.  I told her I was probably not the person to ask that question to.  This is not easy.  It has not gotten easier.  She is not better.  We have miles and miles and miles to go.  I am bitter.  I am jealous.  People that come in and feed their kid and they are better in months or even a year or two.  Even if not in solid recovery they are better and don’t fight every meal, every morsel, every calorie that goes into their body whether it be through their mouth or from smell or touch.  Damn right I’m jealous.  I don’t think I’ll ever be unjealous.  This disease has taken so much from my family.  I have two other kids that are currently struggling with different things.  I’m trying to find help for them.  Our healthcare system sucks.  It’s exhausting and overwhelming to try to find help.  You would think I would be an expert at it by now.  But I’m not.  I don’t think being an expert is possible.  It sucks ass.