Keeping It Real

First I want to say I meant every word I said yesterday with all my heart.  But no matter how passionately I believe that Little Man is a glorious gift – not in spite of his FASD – but just exactly as he is, some days I fail.  I fail to see his gifts.  I fail to live in the moment with him.  I fail him. 

We had one of those last night.  Little Man has to endure a fairly unpleasant clean out process every so often because of the damage to the nerve cells in his digestive system.  This is not an optional thing.  It’s not vitamins or some therapy that I hope will be helpful to him.  It’s required to prevent some nasty, even potentially fatal, complications from his digestion issues.  (I’m trying to avoid a lot of overt poop talk here but if you want to understand more read about it here.) 

I hate doing it. He hates having it.  He insists he won’t.  I insist he must.   Last night we both insisted down to the bitter end which resulted in him having the treatment and me having the crap kicked out of me.  Sometimes things go more smoothly.  Mostly they don’t though.  It’s bad enough he has to endure the treatment.  He shouldn’t have to manage my losing my temper over it too.  But I’m human.  Getting kicked and scratched until there’s blood drawn hurts.  I raised my voice.  A lot.  I told him “You hurt me.”  “Yes, I am mad at you.”  And he cried.

It wasn’t long before he was back to his sunny self. I told him I was sorry for yelling.  He told me he was sorry for hurting me.  We kissed and snuggled for story time before bed.  We talked about it again this morning; about how important it is he have his clean out so he doesn’t get sick, about how it would go easier for him too if he didn’t fight with me during it, about how even if it goes very badly and I am angry I still love him forever and always.  He seems fine about it now but how much did I add to his fear and stress about it next time? 

I can’t know the answer to that.  And no matter how I try I can’t be perfect.  So I draw comfort from things like the advice from Mary Anne Radmacher “Speak quietly to yourself & promise there will be better days. Whisper gently to yourself and provide assurance that you really are extending your best effort. Console your bruised and tender spirit with reminders of many other successes. Offer comfort in practical and tangible ways - as if you were encouraging your dearest friend. Recognize that on certain days the greatest grace is that the day is over and you get to close your eyes. Tomorrow comes more brightly...” 

Taking the Bad with the Good

That's what life is made of isn't it, the light and the dark and all the shades between? We've had developments at both ends of that continuum this past week. I don't know about you but I like finishing on a high note so let's just get the low point out of the way first shall we?

Those that know us will recall that Little Man has ongoing issues with being able to pass his stools. To short cut for those that don't, Remember those old "Buns of Steel" exercise commercials?  I don't know off the top of my head what metal is stronger than steel but all of Little Man's lower digestive tract is made of whatever it is.  Without an enema he will never give a shit. Seriously. Never.  (Sorry for the rude language but really how could I let that one go by?)  we've been to all kinds of specialists and tried more therapies than you can imagine. Where we are at is what we've finally come to as the best of the bad choices we have.

In spite of being the best of the worst, the weekly dosing needed to cause a bowel movement is still a truly miserable time for all of us.  He lets loose both ear and heart shattering screams during the administration process.  After that he wants me to kneel by the throne and hug him while the medication does its thing. Aside from the unpleasant location and the unbelievable stench that comes with passing a weeks’ worth of waste, there's the extra helping of guilt that layers on when he wants me to comfort him from the misery I just inflicted. 

 And now, just as of last week, to make the whole business more painful (literally) he has officially become too strong for me to manage on my own. I hobbled away from our last encounter with 3 bruises, each more than 2 inches in diameter, that blossomed into a gruesome black green yellow combo and a fairly impressive knot on my head. Thankfully, I was able to complete the procedure without inflicting any return damage but I'm pretty dang sure that this has just become a two man job from here on out.  Trying to find the silver lining in this my darling husband pointed out that all the physical therapy Little Man has been doing is really starting to show results in improved strength and gross motor control.  I let him live.  I'll need him for next week's unpleasantries after all.

Moving on to the more pleasant developments, Little Man has started TYING.HIS.OWN.SHOES!!!  This is huge for us, like beyond just my faux all caps shout.  It needs to be in letters 50 feet tall covered in glitter.  Most folks faced with serious fine motor control issues and problems with motor planning would just go for the Velcro or slip ons but that is not an option for us.  Little man has some real problems with his feet and he has to wear custom orthotics (you don’t even want to know what those suckers cost) and lace up shoes to insure his foot problems do not get worse.  We’ve been working on shoe tying for, well forever really, but seriously with his OT at school and in private sessions and at home for a year and a half now.  And suddenly one day he just did it.  I am so proud of him!  Not just for the new skill but for the patience and perseverance to keep at it for so long.  He just rocks!