Learning to live without a plan

Life is said to be funny.  Sometimes that's ha ha funny.  Sometimes it's not.  When your child has been diagnosed with a mental illness, everything stops on a dime.  Everything.  You learn an entirely new vocabulary, you need an entirely new skill set.  This blog will be about the incredible heartbreak of a situation largely out of your control, and the absolute necessity of finding the humor in it, wherever you can.

My disordered child is still my child.  My baby.  Sometimes it's excrutiating to look at her baby and preschool photos and see that beautiful child who held all the promise of a happy, funny, unlimited future.  She was always amazingly strong willed.  So damn smart, it was, just incredibly delightful.  Adventurous, sweet, musical, snuggly.  She was fussy as a newborn, but soon became one of my favorite companions.  She was speaking in sentences at 13 months.  Noun verb noun.

"Michael Kelly go outside?"

Well, ok, noun noun verb noun, as she was talking about her brother and the dog.  But still, pretty amazing for a tiny kid just learning to walk.

Fast forward to middle school, and things get a bit more challenging.  Lily was never defiant.  Stubborn.  Picky.  Sensitive.  But not unkind or in your face oppositional.  If she held onto an idea or issue, she had a good reason.  Didn't mean I always understood the reason, but she absolutely had a darn good one.  She would defend a friend to the bitter end, facing down adults or anyone in her path.  You didn't hurt one of her friends and remain unscathed.

So this past summer, Lily started exhibiting an extremely high level of anxiety.  We sought help.  Lily started hallucinating.  She's a really innocent kid, and I was positive no drugs were involved.  We got her started on an antipsychiotic.  Not an easy choice, but clearly our only option when she had a scary psychotic episode.  But things were just beginning.

Lily's illness was in it's early stages.  And we're still only a few months into this.  But we've weathered two involuntary hospitalizations and numerous medication changes.  I won't revisit the hell that any of that wrought just now.  It's been terrifying.  And nothing prepares you for this with your child.

So we're on plan B, which is no plan at all, just the herculean effort to get through each day.  My support person in town isn't able to be of any support now.  And that's a whole other blog.  Now we face the suddenly bizarre issue of how to keep my job and medical benefits, and still care for my kid.  I'm single.  It's all on me.

Which brings me back around to what counts.  Sometimes I'm so effing sad, for her, for me, for her siblings.  Sometimes I'm enraged that we have this to deal with.  And I do know damn well it could be worse.  I can still wrap my arms around her, when she's calm and will tolerate my touch. 

But I surely do miss my Lily.