hope is not enough

BY EMILY DICKINSON“Hope” is the thing with feathers -That perches in the soul -And sings the tune without the words -And never stops - at all -And sweetest - in the Gale - is heard -

There comes a day when you open to Hope, examine its feathers, begin to hear its song.

23843599_10214476329163299_5196544792506332245_nWhistling very quietly you make plans for him, and even for yourself. Not big plans, small plans like a Service Dog for him, and a divorce for you. The dog will ground him, and he will keep getting better. He will work, he will find stability and he will have times where he is happy. For you, it’s just a small hope, a little house, a little life of your own, a means to live this life you imagine.

The call comes, just as it always does. The call after the successful holiday visits, after your biggest worry was how to pay for a dog for him. Aside: you mistype dog as god and consider leaving the typo. Spoiler: you never get to figure the pay for it part out. The call after everyone has assumed that he is now Better and Everything Will Be Okay and are secretly so fucking relieved because having to keep hearing about his struggles was rather exhausting, and they would like the much easier task of thinking all is Just Grand now.

The call comes and he is unstable, he is very ill and he is back in a hospital. You’ve had this call dozens of time, you still whistle and hold Hope’s feather between your thumb and first finger.

Then silence. Silence for days and days and you don’t know where he is and no one is answering your messages. The silence perches in your stomach. The silence does know how to whistle.

The new call came this morning while you were drinking coffee. The new call included the phrases,

  • He needs another level of care and they’re not it. They had Been It for four years. You thought they would Be It when he got his dog (or typo god). You thought this is where he might feel happy because you know what really sucks? What REALLY SUCKS is being 22years old and struggling with a serious illness for the last 11 years. An illness that people judge and blame you and your family for. Nobody wants that.
  • He needs a  ‘Long-Term Therapeutic Living Community”  Info: 1. they are Capital E Expensive, but 2. You have good insurance! but 3. they have very long waiting lists. Aside: He has good insurance only for another few years under his dad’s plan.
  • We’ve practically been keeping him for free / We can’t adopt him / What did YOU think was going to happen to him long-term?! This is where you mention the dog, the work, the bit of happiness and feel foolish.
  • We don’t know what more we can do for him / This is the best he can manage / He isn’t going to get better than this.

He isn’t going to get better than this.

The feather is gone and you are trying desperately not to sound like someone who is sobbing into a couch pillow between mumbled replies.

Then you hear the voice that said to you years ago that if you ever tried to leave, to divorce that you would be destitute and live in a ‘rat infested shithole’ which is now somewhat funny because of the current news. Still, how can you possibly think of divorcing, taking money for your little house when your son will need it for the rest of his life. How can you think about yourself when you realize he will not get better and you will be in charge of him for the rest of your life. IMG_20171202_011100_116.jpg

dear me

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Dear me,

Get up.
Place your feet on the floor,
one after the other.
Breath.
Stand. Walk. Wash your face.
Get up.
Rise and Shine.

Get up.
This is not over.
You are not over,
you are only just beginning.
There are no fat ladies singing,
the credits have not rolled
your movie has only just started.
You have words to write.
There are breezes lifting kites, blowing leaves
that need to be noticed;
there are songs
that need to be heard.

Get up.
Drag your pen across paper.
Write (dammit). Write despite of your broken hand,
in spite of the lifeless fingers.
Write (dammit)
with your teeth if you have to.
Get the words out.
Write about fire, stars, water,
Just write (dammit).

Stand.
Defy gravity.
Do not give them your power.
Do not give
One. More. Moment to those
who called your hopes and fears drama that they didn’t have time for.
Do not.
Do not make yourself small for other’s comfort.
Stand. Defy gravity, even as it pulls you to the earth.
Stand. Inhale. Exhale. Shine.
Be yourself,
your messy, dramatic, beautifully flawed, your lovable self.
Just be.

Stand.
You are who you love,
You are not who loves you.
Define yourself.
On a cool night walk to the beach and make a fire
burn the letters. Take
the card you have clung to and
burn it.
Give them to the fire.
Burn them all
Get up. Look up. Walk away.
Look at the stars, borrow as much light as you need.
Listen to the waves.
Walk into the arms of your friends.
Let go. Let go.
Let the rest go.

Shine.
Walk into your garden and
plant a new seed.
Stand. Shine. Watch it grow,
watch it defy gravity.
Pull the weeds.
Burn them. Burn every last weed
(like the card, like the words, let go, let go, let go)
every weed
that would choke your seed, steal its light,
hinder its growth.
The world will tell you to stop,
to dim your light.
Do not.
There are people that need more light.
Make extra.

Shine.
Feast
on chocolate, on love, on every moment of your life.
Breath.
Deeper than you’ve ever dared.
Stand.
Place your feet on the floor,
one after the other.
Walk.
Walk into darkness, into nothing and
trust each step you take.
Save your own life. One breath,
one step, one word, one seed
at a time.

Dear me,
There is no other moment.
There is only right now.
Live.
Right now.
Get up. Stand. Walk. Shine.
Be that which is you, and only you.
You are enough.
You are what you love.
You are.
Start there.
Breath.

Hope

wpid-20150312_111347_1.jpgThey do not have Congratulations on Your Continued Recovery cards, or at least they don’t have them at Walgreen’s, which is where I go to get items for his care package. I’ve already sent him granola bars, almonds, and a new book from Amazon, but I have to go to Walgreen’s to get cigarettes, cigarettes, some car magazines, a bit of chocolate, and a card. I have a system, first at Walgreen’s painstakingly explaining the cigarettes are not for me, and later at home as I pack and label his bi-monthly box with trinkets and necessities so he knows he’s not forgotten and is still loved. I cry a little each time, sometimes I cry more than a little, sometimes I keep the tears in my eyes all day without them ever falling down my cheeks. My chest feels tight, and I am drawn back into the place where hope and fear co-mingle whenever I stop my busy mind and think just of him.

Today it really feels like Spring, and as I carry my reusable shopping bag of cigarettes (because cigarettes or not, I’m still me) into the house, I stop to look at my garden. My front garden has gone from snow to mud in a week, and for days I have been crawling in this mud looking for the first signs of life. Today the  daffodils are breaking through the ground. Today I found the first buds of the Lenton Rose under the snow. Today my dog tore through the yard unimpinged by snow, and sent clumps of mud flying in his joyous wake, and today, I stood and listened to the cardinal I’ve named Oberon sing from the still bare maple tree. Today Spring is here. Today you can hear hope in the air, see it the mud, and for moments I feel it in my chest.

wpid-20150312_111708_1.jpgIn the cycle of nature there is no such thing as victory or defeat; there is only movement.”
Paulo Coelho,

There is no such thing as victory or defeat; there is only movement, and so we keep moving. As long as there is life, there is hope, and today there is life, today there is hope.

There have been other Springs, other hopes, some have lived, many died, but I’ll hold these little bits of it close, at least for today, and maybe when I’m mailing his package this afternoon there won’t be as many tears floating in my eyes, or maybe there’ll be more, but they’ll be the good kind of tears, maybe.

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and so this is Christmas

 

And what have you done
Another year over
And a new one just begun
And so this is Christmas
I hope you have fun   – John Lennon

And so it is Christmas and I  won’t be spending it with my son. Today I took him to the latest facility, to the latest attempt to save him. He won’t be home again for awhile, if ever.

We’ve been in a downward spiral for weeks (months? years? a lifetime?), and this could be our last chance at helping him. After this I’m officially out of ideas / money / hope / whatever.

and so this is Christmas

We’ll have just two stockings on the fireplace this year. I know we’re not the first family to go through something like this, but it is our first go at it.

and what have you done

I packed his bag this morning and took him in expecting a fight, expecting him to be a jerk. He wasn’t. He opened the advent calender I got him, and ate his chocolate while sitting in the waiting room. I don’t know if I’ve seen anything sadder. When it was time to go he just said thank you. I would have been easier if he had been an ass. He hugged me and I left.

Another year over
and a new one just begun

Last night I bought outside Christmas lights. Something we haven’t had in years. I bought suet wreaths for the birds and gave money to the Salvation Army. I’ll set up the lights today, hang the little wreaths and start decorating the house. It seems insane on one level to be doing anything at all, when what I want to do at any given moment is curl up and wish this all away. But life’s not like that. You keep living. You keep loving. You keep moving forward, and you keep hoping and planning for something better.

And so this is Christmas
I hope you have fun