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

meanwhile, when you were focused on back to school, this happened

So This happened today.

The Heroin Crisis Act Unanimously Passes Through Illinois House

A friend from one of my online support groups summed it up beautifully “Today was epic! Illinois legislators passed House Bill 1, the Heroin Crisis Bill that opens up treatment options for ALL who suffer from the disease of addiction. You no longer have to be wealthy, or have “the right kind of insurance”…all you have to do is want to get into recovery, and a way will be found.”

Alex Colville,  Horse and Train,

Alex Colville, Horse and Train,

People have died. Way too many people have died, are dying now, and will die from this disease.

I don’t mean to be unkind, really I don’t, but there are days when reading about how hard it is to have your well, well and alive, well and alive, and thriving, child away at college and how much you miss them, and all the money you have to spend on their phones, books, cars, rent and so on, there are days I just can’t read your Facebook posts, or look at pictures of your kids’ dorm room, college campus, and/or sports team. Today is one of those days. Today I am missing my son, not because he is away at college and spending too much money, but because he is away in treatment half  a country away. He’s been away for over 15 months, without holiday weekends visits, or summer or Christmas  at home. I haven’t seen him since December, his sisters since last June.

And I know there are people reading this who would give anything to have their child safe and in treatment, anything just to have their child alive again.

We are very, very lucky. We had the “right” insurance, sort of. More accurately, we had insurance and the time, and the physical and mental tenacity to fight, to fight over and over and over again, for coverage that was constantly denied. I can’t even think about the money still owed.

So yeah, today was important. I am hopeful. I am precariously optimistic that things could get better, that fewer families will watch their loved ones die from lack of adequate treatment. I am also tired, and feel like my skin is way too thin, and stretched way too tight, and feel like I have no defenses left, no protection from the emotions this stirs up. Oh, and I hate this disease, I hate how it decimated my family, my son, but also my father and my brother, and all who love and who loved them.

That’s it. That’s all I’ve got tonight. No pithy wisdom, no sage acceptance or quotes about letting go and letting god. Just straight up tired, Maybe tomorrow I’ll be wise.