Now the Real Work Starts

What’s comin’ will come and we’ll meet it when it does.  – Hagrid

So I’m just going to get this out and then back up and explain, I think it will be easier.  Connor met his weight goal early this week.  It’s okay freak out, clap your hands, do a little dance.  Whatever you need to.  We certainly did when we were told.  We immediately breathed a huge sigh of relief and then we stopped, and remembered that we were a long way off from the end of this particular tunnel yet.  The coined phrase at Kartini is Now the real work starts. So allow me to back up a little and explain exactly what that work entails.

As I explained to a friend the other night, the weight thing is a tricky beast.  Basically every body has a fixed point it is trying to get to.  It may waiver above or below depending on our eating and activity habits.  This fixed point is different for everybody.  Over the summer when he was labeled failure to thrive he wasn’t losing weight, but had stopped gaining weight which for kids is the same thing since they are in a constant state of growth and development.  He was checked into the Kartini clinic weighing 54 pounds, and had gone from the 25th percentile to below the 10th.  So his goal weight was based on all of these factors, and with restored weight he will begin to grow properly again.  His body stopped development in may areas to essentially keep him alive.  He hasn’t grown any taller or lost any teeth in over a year, his digestive track slowed to a crawl, and, his emotions / behavior were all out of whack as ED took over his brain.

NOW with weight restored the body will slowly begin to turn these systems back on.  Among the first will be his brain.  He has been struggling for control all along, but without being properly fed the brain stood little chance against the powerful persuasion of his illness.  (If you haven’t watched the tedx talk by Dr Laura Hill I added to the Knowing’s Half the Battle post I highly recommend you do.  It explains this fight for control incredibly well.)  Once the brain is able to fight back we can then reason with Connor where before it was akin to reasoning with a toddler.  It just didn’t happen.  We could say to him, give food a chance, food is the medicine your body needs, but it didn’t matter.

Don’t get me wrong, meeting this weight goal is a HUGE step.  Connor has been working so hard just to get here to this point.  But there are many more hurdles to overcome.  He must now maintain this weight on his own.  Which means he needs to eat.  While reasoning with him is a little easier now, it is still like walking on egg shells.  The last three nights Connor was given a break from the tube feeding.  The tube is still in place, but his care team needed to see if he could eat well enough on his own before completely removing it.  It’s been hit or miss to be honest.  I thought I was scared when we checked Connor in to Kartini.  No, that was nothing compared to the fear running through me now.  What if he can’t maintain his weight on his own?  What if he can?  Is it scarier to stay longer or to leave the security of Kartini?  I feel manic with the arbitrariness of ARFID.  Is it too much to ask for a clear set of rules for getting my child through this?  Apparently because there isn’t one.  Really isn’t that the definition of mental illness?  One day it’s this fear, and three days from now it’s something entirely different.  There is no easy answer to the question, “How are things going?” Because things are simultaneously good and bad.  Simple and complicated.

Here again the importance of taking it one step at a time intervenes and I have to admit to myself that I am not helping anything by letting my fears hijack Connor’s treatment.  I mean we’re not allowing him to do that and if this is going to work the rest of us (but mostly me) need to hold ourselves to the same standards.  Swallowing my fear leaves a bitter taste in my mouth, and a pit in my stomach.  Sometimes I feel like I am pretending, and sometimes I am.  Hey fake it till ya make it!  What it comes down to is, can we do this real work?  The answer is, no.  We cannot.  It’s all up to God and the boy now, and that is what scares me the most.   I know, that shouldn’t be scary, but it doesn’t mean it’s not.  I never said anything about this was rational.

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2 thoughts on “Now the Real Work Starts

  1. Fear is beyond worry but if you have both going… for him and for all that has hit your little family… words escape me. Thank you for letting us share in this any way you need us to.

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  2. It is exciting that he has made this huge goal. We certainly understand your apprehension about the path forward and the knowledge that it may not always be forward. We love you all and have faith that God will see you through this,every step, forward and back. Your faith will make you strong enough.

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