Hush Little Baby

October 2000

I had a baby

She was so very wanted.

It took many months of trying

The only of my three that was planned

She was amazing right from the start

Ok maybe not during the hours of colicky crying

But yes even then

She started everything early

She was walking AND talking by 8 month

Yes 8 months

She was so happy and smart and she shined

For many years she shined

And she loved talking to people

All people but especially older people

And I held her and rocked her and told her stories

And at some point she began telling me stories

And drawing

And creating

And then the shine began slipping

Just a little at first

A few less smiles

A little more quiet

And then BOOM

“Mom I want to die”

And I cracked

It’s been six years

And the cracks have become breaks

And now we barely speak

I’ve had to begin protecting my heart and mind

So I cook meals

Monitor medications

Make sure services are in place

Etc Etc Etc

And I shine less and less

And hurt more and more

My arms are empty and I miss my baby girl

Even when your children are grown your arms still feel them

Even when it’s the shadow of them and they are off exploring the world

But sometimes something happens

And you can’t feel them anymore

Somewhere in the brain broken and wracked by illness

My baby is there

But my arms feel empty

And what is looking at me wants nothing from me

And I’m trying to not feel it in my heart

Because my head knows it’s disease and not daughter

But

My

Arms

Feel

Too

Light

How Do You Go On? One Baby Step At A Time

Today was a good day. It was a day that was not about the mess. It was a day that nice things, good things, happened for me and by me. It was the kind of day that happens so seldomly but that without I think I’d fall over, curl up into a ball, and never get back up.

I got to work and a friend had put aside an ARC (a copy of a book before public release) of the new Angie Thomas book On The Come Up for me and shared in my excitement of Angie retweeting me.

I surprised Joshua with a trip to Lesley University to see one of his favorite authors, Jason Reynolds, and we heard him read from a work in progress.

And I didn’t think about the demons we are fighting for a few hours.

And I’m determined not to feel guilty for living in the moment and shutting out the crap that drowns me most days.

I Don’t Know How To Not Feel

I Don’t Know How To Not Feel SAD

I Don’t Know How To Not Feel ANGRY

I Don’t Know How To Not Feel GUILTY 

I Don’t Know How To Not Feel FRUSTRATED 

I Don’t Know How To Not Feel FEARFUL 

I Don’t Know How To Not Feel LIKE A FAILURE

I Don’t Know How To Not Feel 

We are in a holding pattern. Being home is hard because everywhere I look is a reminder of what we are going to be losing again when a place in a program is found. Every interaction is a reminder of what we have already lost to the thing that has had its way with my child’s brain.

Simple things aren’t. Pain is constant. And I just wish I could stop feeling it all.
At work I can pretend for a little while that it’s not happening.
I talk to fellow book lovers, people who know that there’s escape on paper and I peddle it to them.
And for a little while I pretend to feel whole. And I almost believe it.

Almost.

Hi. You may be sorry you found me...but....here goes...day 1 post 1...

I was inspired by my friend Eileen to begin a blog that isn't about my struggles with my weight or my books. I will still be doing my book blog of course but this place is different. I have things to say. Things that will often be difficult for me to say and you to hear.
But I can't keep it in. I am busting with it, these words, they are swirling in my brain and gut and drowning me.
I am trying to throw myself a rope into the world so I don't fall away completely. Something to hold onto.

Today seemed like a good day to start this...it is the first day back to school after the Holiday Break for the two of my kids who, for now anyway, live here at home...HOME...what a loaded word...


A fresh start for them and a start for me to dump all of this guilt, ugliness, pain, struggle, and hopefully a few small victories too....

And what you may be asking yourself could be so bad as all that?

For the past six years my family has lived with an illness that one of us has but fucks with all of us...the person who has it being sometimes so oblivious to the explosion and aftershock their actions cause that they are the least impacted....Mental Illness.

My now 18 year old has severe mental illness....Bipolar....Borderline Personality Disorder & some level of Schizophrenia and/or Schizoaffective Disorder.....We are WAITING....and WAITING...and WAITING...for the formalization of diagnosis now that they are 18...some of this WAITING is age...many don't want to diagnosis these things until a person is 18 no matter how clear it is that this is what is going on...and the other, the harder part of the WAITING is the wait lists, the WAITING caused by a lack of there being enough providers....

So now I say what I have been stalling in saying by giving that bit of background....but if I don't say it will be another stone in my pocket pulling me under....helping to drown me in loneliness and shame...

I am so fucking glad that school is back in session, I am so glad my poor, sick through no fault of their own, child is not in the house....Things got really fucking awful over the past 2 weeks and I am tense and ashamed...but I am glad to have this space, this quiet before the school day ends, time without the tension of their presence and my inability to help them....

And as much as I don't like my child (FUCK it is so hard to say that, and I am sure I will be judged by some for saying it)...I love this kid so damn much...these two things war inside me....

Ok so think you will stick around? I hope so...but even if you don't I will be here spilling my blood in the form of my broken and ugly words....