This Crazy Life

So as anyone knows that follows our story my daughter is actually doing ok.  No, she’s not thriving.  But she is surviving.  And week by week she does something that amazes me.  It may be a small thing to most, like drinking water from a water dispenser, but compared to the battle we’ve been through everything seems so huge when I honestly thought we were going to be in and out of the hospital forever.  Her doctor and I have both talked a lot about this.  When we quit forcing recovery and quit forcing anything other than staying out of the hospital it really seems to be working.  We’ve been going on her timeframe.  We’ve been letting her be in charge.  And you know what, we’re better than we’ve ever been in the last 5 years.  So the other day on our drive home from the doctor appt I was telling my daughter about how proud of her I was and how we had talked about all these things she’s doing.  She told me about a girl she follows up tik tok that talks about harm reduction.  She said when everyone stopped forcing recovery on her and moved to harm reduction it really worked.  She didn’t want to recover.  My daughter doesn’t want to recover.  But she wants to have a life and be treated normally even if what they are doing is weird.  If they try to go out to eat just to sit and have to leave because the food in the air stresses them out.  Let them.  If they want to join in the family egg hunt for easter, let them.  They might have to wear gloves.  But let them.  Anyway, she said this girl just worked on harm reduction for several years and then she finally recovered and is in actual recovery now.  While I hope and dream of full recovery for my daughter, I’m going to concentrate on the harm reduction.  We’ve kept her out of the hospital for over a year.   And in that time she’s done so many new things that I never even dreamed possible.  So anyone out there that is struggling or has a loved one struggling and you feel like you’ve tried everything.  Maybe let them take the lead.  They may teeter dangerously close to the edge for a while, but it’s worked for us.  I can’t wait to see what else she can accomplish!