ghost

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I love you

I got a call from a ghost today.

The call display said Montana, and  I almost didn’t answer, I don’t know anyone from Montana. The call was from a father that I didn’t know. A father that I will never meet. He told me his son was dead, and for a moment I had to think which dead son is this, which dead child is this about.

Then I understood.

This was Kevin’s father. Kevin who was dead. Kevin, the young man who made a small party my son’s first birthday in Arizona, far away from home. Kevin, who arranged for a decorated ice cream cake and twenty candles. Kevin who ordered pizzas with everything that Graham liked on them. Kevin who took pictures of Graham blowing out the candles and sent them to me because he knew how sad I was about not being there for his birthday. That Kevin who took care of my son when I could not. That Kevin who within six months of the party had relapsed, and shortly after had died.

I had sent his phone a text after he died. More of a prayer in text form. It read something like I’m so very sorry, and thank you. I was so sorry he had died, and still so grateful to him for taking care of my son. I sent it, and like a prayer, I never thought anyone would ever know about it.

I do understand that to his father when he finally got his dead son’s phone that my message would be a mystery. I imagine how many times he must of read it before he worked up the nerve to call me and ask just what I meant texting a dead person.

Today he called and we found out about each other, although we never even exchanged names. I told him that I was so sorry, that his son had been kind to mine, and kind to me, and how much that meant to me. I told him that my son was still alive and still clean and sober. I don’t know that was comforting or painful for him. I think it could be both. Maybe I should  have said in October my brother, John, and many years ago my father, Alan died of the same disease his son did. Maybe, but that’s not the same as a child. Nothing could be that.

He seemed content enough to have his mystery solved and we said goodbye, and then I sat there and cried for all of us, for those who have died, and for those of us who loved them. I cried, because there is nothing else I can do for Kevin, for John, for Alan, for any of the dead ones.

For the families and loved ones left behind, sorry is not ever going to be enough. Sorry can’t heal the kind of pain this is, but is all we can do. We say sorry and we then hold space for someone’s pain. We say sorry and we hold space in our words, in our actions, in our lives, and in our hearts for them. We let them feel their pain without judgement. We surround them in as much love as we can. This is what we do for the living,

because there is nothing more we can do for our dead.

It’s four o’clock in the morning, Damn it*

stl0006_20010216At four o’clock this morning I’d been asleep for 5 hours.

Today I took him to the airport.

Four nights ago I drove him to the hospital with an empty bottle in my pocket. Four nights ago I was already in my pajamas and wanted only to go to bed and to sleep, when he showed me what he’d taken. Four nights ago he said he reached his bottom and was ready to recover, but that’s not why I took him to the hospital.

I was not sitting in the ER once again, with my son hooked up to monitors because of the street drugs he had been relapsing on for weeks.  I wasn’t there because of the altered state he went into the previous week during his birthday dinner, in the nice restaurant, surrounded by nice families. The altered state that was caused because he had stopped taking his prescribed medicine two weeks ago. I was in the ER because of cough syrup. Cough syrup he’d been drinking by the bottle, cough syrup that contained Tylenol. I took him to the hospital when I realized he’d been taking massive doses of Tylenol unintentionally with the cough syrup,  because a Tylenol overdose doesn’t kill you right away, it kills your liver and your kidneys first, and it does it slowly.

So I sat there, dead tired, not because of heroin, or cocaine, but because of Tylenol. I sat there while a nurse roughly scrubbed down his arm and called him “dirty”, while she told him was going to die, while she rammed an IV needle in his arm, intentionally causing him pain. He bore it quietly. Her harsh words and her painful treatment of him. I bore it too, even while a part of brain was saying how wrong it was.

They keep the curtains open in cases of overdose, they also take all your clothing and belongings to make sure you don’t try to sneak out before your mental health is properly assessed.

This boy. This boy that the angry nurse purposely hurt. This boy used to bring me dandelion bouquets, used to sit for hours on my lap while I read him story after story, this boy who always tried so hard to fit in. This beautiful boy was still there in the hospital bed, with the sore arm, with all his belongings taken away. My little boy, who I could still occasionally glimpse in a gesture, in an expression, he was still in there.My boy, who’s brain chemistry has worked against him for the last ten years was still there, still trying. He has been fighting against a mind that contains beasts and horrors and realities only he can see. A mind, that when he became overwhelmed with its noise, he tried to quiet with drugs, and they worked. The drugs settled his mind, the drugs helped him make friends, let him feel like he belonged and was accepted. How can you blame him? He was 15, and his brain worked in ways that none of us could comprehend.

I saw that he was in pain, and I tried to fix it. I tried everything I could think of, sports, clubs, mentors, social workers, doctors, life coaches, tutors, psychiatrists, psychologists, peer groups, retreats, camps. I tried, but none of these worked as well as drugs and so the drugs won. I lost my boy by degrees, and he became the kind of patient a nurse thinks it’s okay to shame and to hurt. He became someone I didn’t know anymore. He became the young man in the hospital bed before me.

I stayed till 3:30am. I stayed while another mental health assessment was done. I stayed till I knew he would be safe and survive the night, and then I went home. It was 4am when I pulled into my driveway, when I slowly got out of my car and started walking through garden to my front door. It was 4am when I noticed the songs of the night birds, and while I’d would have rather have done anything but spend a night in hospital with my drug addled son, the bird songs, an owl hoot, and my dog waiting up for me were comforting.

He was in hospital for four days. Four days that I spent negotiating with insurance, four days trying to find him something, someone, somewhere to help him. Four days crying in my car where no one could see me, four days asking for help, four days not sleeping or eating enough, and this morning I drove him to the airport.

Today he flew across the country to a residential treatment center in California called Michael’s House. He says it’s incredibly beautiful there. They’ve taken his phone now, and I won’t be able to talk to him for 7 days, but he seemed hopeful and happy tonight, so I will hold on to that.

 *Lyrics by Bernie Taupin from “Someone Saved My Life Tonight”

life with addiction, mental illness and stigma

It started about 9 years ago with a handwriting tutor.  In grade three Graham’s handwriting was terrible. I found him a handwriting tutor and drove him there three times a week until we realized it wasn’t having any effect on his handwriting. Over the next year it became clear it was something more than sloppy penmanship, it was like his brain was going way too fast for his hand to keep up. I found him a psychologist, had him tested and to absolutely no one’s surprise he was diagnosed with ADHD, and so started a long and inglorious period where I became an expert on 504 education plans, communicating with teachers, school social workers, and psychologists. I learned everything I could about the –constantly changing – prescribed medications and while I was at it I tweaked his already pretty healthy diet in an effort to improve his concentration and focus. At some point he told me he was seeing colours that weren’t there, I had his eyes checked – all normal, and chocked it up to an intelligent and creative kid’s imagination.

 During his middle school years I got even better at working with his teachers and school staff. He now had an organizational counselor who met with him a few times a week in an attempt to keep him from losing track of pretty much everything. I worried about him not fitting in, but I told myself a lot of kids have trouble in middle school and end up just fine, in high school things would be better, I was sure.

I can’t remember when he first told me he heard voices, but it was somewhere in his second year of high school. Again, I attributed it to a very active imagination and by this point his relationship with facts was off and on, so I didn’t pay too much attention to it. In high school there were many more pressing things to worry about. It wasn’t easier, it was harder, so  much harder. I got to know a lot of teachers, became very close to his guidance counselor – who eventually memorized my phone number from the sheer volume of calls he had to make – the school social worker – who still hugs me when she sees me, and I got to know, quite well 3 separate school Deans.  He struggled through school, painful to watch because he was so bright, just not in a way the he could show. Things seemed to be getting better the summer before his junior year and he was hanging with people and going out and seemed generally happy.

And then his junior year. Small things at first, some dishonesties, stories that didn’t quite seem to make sense, but he had friends and seemed to be enjoying himself, so I told myself. He was seeing a ‘very cool’ social worker who kept assuring me that everything was fine, and that I needed to back off and ‘give him some space’. Then I found a pack of cigarettes. I was appalled. This was the worst thing that I could imagine, how could a child of mine start smoking, where had I gone wrong? I got over that soon enough. Shortly after the cigarette discovery, I found out he had been selling his ADHD drugs at school and buying marijuana and cigarettes with the money. I found out he’d been stealing from just about everyone. Suddenly the cigarettes didn’t seem so bad. His new friends? Customers. He had found a way to deal with his social awkwardness.  His ‘very cool’ social worker? He knew about everything, all the drugs, the dealing. He didn’t seem so ‘cool’ anymore. All the signs pointing to something more much more serious mentally going on he attributed to me being an over protective mother, and he told me so several times.  I stopped taking him to that social worker, but some serious damage was done, from that point on Graham blamed me for taking away ‘the one guy who understood him’ and wouldn’t cooperate with any new counselor, or social worker that I found for him. Graham still talked about the voices, but at this point I assumed everything he said was questionable – and generally this was true.

His behaviour became worse and worse. One night after 11pm he jumped out his bedroom window and ran

off into the night, just because. Catherine and I were each driving around for over an hour trying to find him. It was surreal. Eventually he showed up and we never did figure out why he did it or where he went. Within a few weeks his behaviours became concerning enough that I called the police, starting what was to be a long and complex relationship with Naperville Police Department and my son. We got lock-boxes and locked up everything of value in our home – money, medications, jewelry. During all this craziness I was taking him to a recommended drug education and prevention program. That was a colossal failure, and two drug counselors later, residential rehab was suggested. I drove him to the facility in Rockford and managed not to cry until after I was in the car coming home alone. For the next 35 days I was in constant contact with the facility and the school to participate in his recovery and to keep him from failing his school year. I drove back and forth twice a week. The nights I was gone my daughters were on their own. For the next year Catherine took over driving her sister to appointments because I couldn’t.

Still we were confident that we had acted quickly enough and effectively and soon enough Graham would be well.

 

After he came home he started an Intensive Outpatient Program, four nights a week for 4 hours in Downer’s Grove. Back and forth I drove, again, the girls were left to fend for themselves. We did this for 11 months. I was also taking him to NA meetings most nights. Our life revolved around Graham his recovery program, his meetings, and his school work. I hired a private tutor and a life coach to try and save his school year. There wasn’t room for much else. He still blamed me for taking away his first ‘cool’ social worker, and wasn’t working well with anyone.

He started his senior year – having passed his junior year just barely – with plans of doing well and finishing strong (a tag line from his life coach). I got to know yet another school Dean, and we had more unpleasant adventures.  He still talked about the voices and this time I decided to see if there was more than addiction going on in his brain. More doctors, more tests, much more money, more arguments and appeals with insurance companies and we ended up with a sobering result. Graham has bipolar disorder. By this time we had taking him off all ADHD stimulant meds because of their negative effects in an addictive brain and although he had been mostly cooperative with rehab and all the doctors and testing he decided the meds for the bipolar didn’t work and he stopped taking them.

Before the Christmas break it was pretty clear that he couldn’t continue at his school and he was told he needed to attend an alternative school. He wasn’t pleased, but he adapted. A couple of months into that school, we were told he couldn’t continue to attend, that his behaviour needed a more controlled environment, and so with tremendous resistance he was sent to another very structured alternative school – where the staff “are trained to restrain” I learned during orientation.  He managed to graduate from high school. He managed this with tremendous support from countless professionals in the schools, in the recovery and medical communities, and from his family. Our lives continued to be dictated by his needs.

The day of his commencement arrived and I couldn’t believe he would actually graduate. I thought we’d done it, we’d won, from now on it would be easier, the worst was over. I was so grateful and relieved and so very proud of him. He looked so proud in his gown, I don’t think he thought he would ever graduate either.

 Sadly it was after he graduated that things got much worse.

He turned 18 right after graduation and was legally considered an adult. By the end of June we had to do the unthinkable, we told him that because of his behaviour he could no longer live in our home. The lying, stealing and erratic behaviour was more than we could bear. We gave him 45 days to change his behaviour, participate in his recovery, to start to take his medication, and at the end of the period if he had not moved forward even slightly, he would have to find somewhere else to live. To come to such a decision was excruciating, to follow through even when his behaviour had only deteriorated was worse. For the months after he moved out I was felt I was the worst parent ever. How on earth did we get to this point? It broke my heart to send him out – even though I spoke with counselors, his NA sponsors and several professionals about how to navigate this with firmness, boundaries and with compassion. That he was loved was never in question, it was the behaviour we couldn’t tolerate. There were late nights where he tried to break into the house long after I should be asleep and I would sit curled up in my room just listening to him try to get in through a locked window. We stayed in contact, sometimes I would hear from the police, sometimes from one of his friends. Near the end the police were looking for him, but because he was now an adult they wouldn’t tell us what for.  In the fall I received a phone call from one of his friends saying that he had tried to walking into traffic to kill himself and that he had been taking to Lindon Oaks. This was his second suicide attempt – the first happened at home when he swallowed a bottle of pills. There was no warning for either, they seemed to be completely impulsive. He was in ICU for the pills and straight to Lindon Oaks (LO) for walking into traffic.

This fall we started the cycle of in-patient admissions and outpatient programs. After his discharge from LO he moved back in and agreed to take medication and participate in treatment. There was more driving back and forth to Outpatient programs and to meetings. There were 3 more admissions to LO, more outpatient programs after he was discharged. He was diagnosed with rapid cycling Bipolar Disorder, an Impulse disorder, Anxiety, and with Psychosis Not Otherwise Specified. It was decided the suicide attempts happened during manic phases, which is common with Bipolar disorder. At the beginning of December I received what was becoming a very familiar call – Graham was being discharged from the outpatient program and was recommended to a higher level of care – residential specifically. I found him a bed in Chicago and drove him in on December 5th to his second residential rehab – which also specialized in dual diagnosis patients. While we were waiting in the lobby he pulled the advent calendar from his bag and ate his chocolate for December 5 – this, more than anything else broke my heart. He stayed there till the end of January with one 8 hour pass for Christmas day. While he was on a waiting list for a spot in a halfway house, I got the all too familiar call saying he couldn’t stay at Gateway anymore and they had sent him to the psych ward of Mt Sinai hospital. He had been planning a suicide attempt. Much scrabbling and a many phone calls later I found a halfway house for him in Elgin. During this time I was driving to Chicago, and in Elgin every week to participate to support him and make sure he was receiving acceptable care.

During the two months at the halfway house he had three separate psych hospital admissions, all for voices and panic attacks. He was compliant with his medications by this time, but it’s a difficult thing to balance and it can take years to find an acceptable balance between effectiveness and acceptable level of side effects. Less than a week ago I got the call from the halfway house, he could no longer stay there and was being discharged within the hour. Graham has relapsed on marijuana and LSD. From there he found his way to what would be his 6th or 7th emergency psych hospital admission. After that admission I drove him to another Gateway residential rehab in Lake Villa. Six days into to that he was back in hospital, the voices were telling him to kill himself. After a day of negotiating Gateway agreed to take him back, and within 6hours of returning he was kicked out, this time for good, the voices had told him to harm his roommate. After this hospitalization I had no more ideas or resources. When he was discharged from hospital and they called to see who was picking him up I had to tell them no one was coming, to discharge him to the homeless shelter. While we was at the Lake County shelter I helped him apply for Medicaid and started the process for Social Security Disability (we got an official rejection letter before we even finished the first application). These could both be long processes. He went back into hospital last week and was supposed to have a bed in a state run rehab, but at the last minute they turned him down, and he was discharged once again into another homeless shelter.

In the last 3 years he has had at least 8 emergency room visits, 10 admissions to hospital – a couple of months total time, 1 ICU stay for 2 days, 4 separate outpatient treatment programs – totaling 16months, 3 residential programs totally, so far 4 months. You can imagine our insurance horrors and staggering bills we owe to many separate institutions. He has also been homeless and lived on the street or in various shelters. He has slept on the street, in people’s garden sheds and the occasional friend’s couch. The time at friend’s houses never lasts long, his behaviour makes it too difficult for people to accommodate him for long.

Graham has an illness. A chronic, debilitating, life threatening illness (and no, I’m not being dramatic, we have been to funerals for children with these diseases). Mental illness and addiction don’t have ribbon campaigns, there are no fun runs, no fundraisers where everyone feels good about helping out.

During the months and months of time he spent in hospital, during the last 2 ½ years of our life Graham received 2 cards – total. He had 2 visitors who were not family. During the months I had to leave my daughters to fend for themselves it felt like there was no support from our community. We were hurting, we were so very tired, and we were on our own.

 

I write a blog. Often I write about what living with a person with addiction and mental illness is like. I wrote about how no one brings you lasagna when your child is an addict. I write quite a bit actually because I am tired of the stigma and fear associated with these illnesses. If Graham had a medical illness with corresponding amounts of hospital admissions it would have been a different experience.

There have been acts of kindness and support which helped tremendously. A friend showed up one day with two books she thought I would enjoy, and batch of homemade cookies and then just hung out for an hour and chatted. A couple came by around Thanksgiving and raked my yard and brought us pumpkin pie. During the 11 months of driving to Downer’s Grove 4 times a week several church do gooders helped out with some of the driving. Some of Graham’s young adult friends from camp mailed him homemade cookies, and 2 even went through the multiple and inconvenient steps to spend an hour visiting with him while he was in Lindon Oaks for the last time. I will never forget these acts of kindness.

Some of the things that have not been helpful :

  • ask if there is anything you can do, and then do nothing.
  • ask if there is anything you can do, and not mean it a word of it.
  • ask if there is anything you can do, and then gossip.
  • ask if there is anything you can do while wearing a fake smile and (literally) walking away (body language – it’s not always subtle) – yes, this has happened, a few times.
  • tell me “I did something right” because, at least, my girls are doing well.
  •   If you think addiction or mental illness is a moral failing, that’s fine, it really is, but please, I don’t need to hear about it

What does help

  • Treat us like a family with an ill family member, we are going through many of the same things families of

people with cancer go through, except we also deal with the negative stigma associating with mental illness

  • be a benevolent witness to the grief and the pain, this doesn’t mean fixing anything, it just means bearing witness with compassion and without judgment.  And I do mean grief – I grieve for the healthy son I thought I had, for the life I thought he would have. The hopes and the dreams I had for him will never happen, they have been replaced with much smaller more basic hopes, like I hope he survives this, I hope he finds someway to be happy with his life.

Sue Monk Kidd has a passage in her latest book – the older sister who has resigned herself to never marrying is watching her younger sister get married. She describes the feeling like walking into an empty room that you forgot was there. In the room you had planned so many things, but now it is essentially empty. It’s not a room that you visit often, and you don’t dwell there when you do, but every now and then you find it, and you remember what you had hoped it would be. When I hear about or see Graham’s old friends, and his peers I step into that room. I see all the potential that’s gone, I see just how lost my boy is.

 

  • If nothing else, be kind to my girls, they are marvelous, courageous and loving people who should not have to go through any of this

These diseases have, on one hand, devastated our family, and on the other brought us closer and made us stronger. I have sat up countless nights curled up certain that I cannot bear this a moment longer, that I have nothing left to give, that I have done everything wrong, that my life and my children’s will never be normal, will never be without this pain. And yet, each morning I get up and go through another day.

Days that are for the most part, happy and are filled with love. What I have learned is just how resilient people can be, how even when faced with disappointment over and over again, we still find ways and things to hope for. I have learned that adversity and pain can make you softer and more compassionate.

Poetry also helps, this poem in particular by Oriah Mountain Dreamer

 The Invitation

It doesn’t interest me what you do for a living. I want to know what you ache for and if you dare to dream of meeting your heart’s longing.

It doesn’t interest me how old you are. I want to know if you will risk looking like a fool for love, for your dream, for the adventure of being alive.

It doesn’t interest me what planets are squaring your moon. I want to know if you have touched the centre of your own sorrow, if you have been opened by life’s betrayals or have become shrivelled and closed from fear of further pain.

I want to know if you can sit with pain, mine or your own, without moving to hide it, or fade it, or fix it.

I want to know if you can be with joy, mine or your own; if you can dance with wildness and let the ecstasy fill you to the tips of your fingers and toes without cautioning us to be careful, be realistic, remember the limitations of being human.

It doesn’t interest me if the story you are telling me is true. I want to know if you can disappoint another to be true to yourself. If you can bear the accusation of betrayal and not betray your own soul. If you can be faithless and therefore trustworthy.

I want to know if you can see Beauty even when it is not pretty every day. And if you can source your own life from its presence.

I want to know if you can live with failure, yours and mine, and still stand at the edge of the lake and shout to the silver of the full moon, ‘Yes.’

It doesn’t interest me to know where you live or how much money you have. I want to know if you can get up after the night of grief and despair, weary and bruised to the bone and do what needs to be done to feed the children.

It doesn’t interest me who you know or how you came to be here. I want to know if you will stand in the centre of the fire with me and not shrink back.

It doesn’t interest me where or what or with whom you have studied. I want to know what sustains you from the inside when all else falls away.

I want to know if you can be alone with yourself and if you truly like the company you keep in the empty moments.

 

 

just in case you forgot he is a person

 

 

Archie Bunker, Wendell Berry and the Buddha

I’m recycling some posts because I think what what they say still needs to be heard.

I don’t when it will happen, but sometimes I get into my car, or arrive somewhere and I just sit. I don’t drive, I don’t get out of the car. I just sit and stare; sometimes I cry, sometimes I just sit and stare at the steering wheel.

Most of the time I think “I’ve got this”, but lately I know, at best, I’m keeping a stiff upper lip. I keep calm and carry on, because to admit you’re not okay invites inquires and I’m not always up to telling my story. This morning I thought I was, but then had to sit in my car for 10minutes waiting for the urge to put my head on the steering wheel and cry to pass.

 God, grant me the Serenity to accept the things I cannot change

the Courage to change the things I can, and

the Wisdom to know the difference

Carrol O’Conner did a Public Service Announcement after he lost his son to drug addiction. It was well before I had kids, but his face and voice stayed with me, and when I feel like giving up, backing down or running away I think about him and I keep going.

About his son he said:

 

“I should have spied on him. I should’ve taken away all his civil rights, spied on him, opened his mail, listened to telephone calls, everything.”
 “Nothing will give me any peace. I’ve lost a son. And I’ll go to my grave without any peace over that.”
“Get between your kid and drugs any way you can, if you want to save the kid’s life”
In his eyes, I see so much pain, remorse, grief, and also I see resolve and courage to make this statement in hopes that it would help. Help save someone’s child. And now it is helping with my own son. I hear it when I am so tired I want to give up, give up and run away, when I want to give into my own increasing cynicism and cut myself off emotionally. I hear it when I am sitting in my car, staring at the steering wheel and seeing nothing. When I don’t want to go into my own house because I am not up for the next conversation I must have. 
Damn you Mr. O’Conner, this fight is too hard. I want to give up. I want to stop deciding where to draw my line in the sand and then stay there no matter what happens. Drawing the lines are hard enough, standing firmly by them can tear you apart. Then I hear him again, and I get out of the car, I stand my ground and I don’t run away. One day at time.

Not everyday is hard. Some days I have my son back, and he’s goofy, loving, helpful, and kind, but I trust those days less now because I have learned that he lies best when he is being kind and sweet, when he looks me sincerely in the eye. I’ve learned not to drop my guard and think this is the turning point, now things will get better, because invariably I discover missing money, that the sincere face was there to manipulate and lie to me. This used to feel like a kick in the gut, a betrayal. Now, it’s part of my life, and that I’ve become used to it is the thing that makes me the saddest.

Here is where I must remember to hate the disease, not my son. Addiction is a disease and its symptoms really, really suck, but my son is still there, even when his disease has him by the throat. I must remember this, but sometimes I don’t and then I have to forgive myself for not being perfect.

I find peace where I can, like now while I write this, or in the times I sit in my car just counting my breaths staring at nothing. I meditate, do yoga and hapkido, I go to parent groups and talk to other parents like me. These things help, while I’m doing them, but in the end I still have to go home and stand by my line.

I love Wendell Berry’s poem, ‘The Peace of Wild Things’, and in nature is where I find the most peace. But even here I find my cynicism creeping in, and it is hard to remain peaceful for more than a moment.

The Peace of Wild Things

When despair for the world grows in me
and I wake in the night at the least sound
in fear of what my life and my children’s lives may be,
I go and lie down where the wood drake
rests in his beauty on the water, and the great heron feeds.
I come into the peace of wild things
who do not tax their lives with forethought
of grief. I come into the presence of still water.
And I feel above me the day-blind stars
waiting with their light. For a time
I rest in the grace of the world, and am free.

 — Wendell Berry 

“if you want to see just how much control you really have, try raising teenagers, several at a time”– my tweet 

I’m not a very good Buddhist these days (good thing I have Unitarian Universalism to fall back on), being so affected by things outside of my control (ie EVERYTHING AND EVERYONE who isn’t me). I get to control my own thinking, not necessarily my first thought, and absolutely not my emotions, but what I choose to think after that is up to me. Suffering comes from attachments, from ego, from clinging to hopes and dreams and not living with what is in front of and within you right now.

 At this point I would like to point out that the Buddha never had to raise teenagers, he became enlightened only after abandoning his wife and child. 

 I need a teacher who has managed to practice Buddhism AND live with children and teenagers, someone with a regular life. I can detach from my ego, recognize how my pride is making me envious, angry, resentful… piece of cake. Okay it took a long while and I’m still working on it, but try to detach with teenagers. When does parenting stop and enabling begin? How do my expectations of acceptable behaviour become attachment to future outcomes? How to I Be Here Now when there are forms to fill out, appointments to organize? How do I, or should I detach myself from my child’s self destructive behaviour?

 Being a parent is work, trying to be a good parent in difficult times is something the makes Atlas’ job look easy. Being a good enough parent is scary, joyful, funny, heartbreaking and utterly exhausting. It breaks your heart, but I think the only way to live with an open heart is by breaking it open, and that takes suffering, and pain, and that takes love, all the love you have. It isn’t pretty most of time, but it is worth it ( I hope….).

how to save a life

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When he was four, I carried my son into the Emergency room while he screamed in pain. He had, as it turned out, appendicitis. For the hours leading up to our dramatic entrance he had been at home not feeling well with a stomach ache which had become worse and worse. I had called a physician friend of mine and gone over his symptoms, which were basically pain, no vomiting, no fever, no right sided tenderness. I was worried it was appendicitis, but I wasn’t sure and wanted someone to tell me what to do. My friend ended up saying it was likely just a GI bug, but it could be appendicitis – ha ha!! Well it was, and his appendix burst that night before they could operate. He had peritonitis by the time they opened him up and they cleaned him out as best they could. That was the longest night of my life. I sat alone in the waiting room while the surgery they had told me would be 90 minutes stretched out for hours with no word to tell me what was going on in the OR. A week later he was sick, his stomach bloated, his incision oozing. They took him back into surgery and cleaned out the peritonitis again, this time leaving the incision open to drain. For weeks afterward the wound oozed and had to be debrided daily. There was no pain medication that helped and these sessions were essentially me holding him down while a nurse pulled out the gauze from hole in his abdomen, irrigated the open wound, repacked it with new sterile gaze. Eventually he healed, and all that is left is an impressive scar.

That was an exceptionally difficult thing to go through. When they finally took him into surgery I didn’t know for sure what was wrong, or what would happen. I was terrified and could do nothing but sit with it for hours in a small waiting room by myself. Difficult and terrifying to say the least, but at least there was something to be done. I took him to Emergency. I jumped up and down like only a mother whose four year old is in agony can until they got the on call surgeon in to see him. I held him up to, and right after surgery. I never left his side in the hospital, and when he had to get up and walk for the first few times after surgery and he cried and he screamed, I held his hand, and made him walk with tears pouring down my own cheeks. I held him down during the painful dressing changes and sang to him. I read him story after story to pass the time and to distract both of us. I felt helpless in the face of his pain and would have taken on myself if only I could have.

Now he is in pain again. He has been in pain for years.  I have done everything I can think of to help him. There have been countless doctors, specialists, counselors and therapists. There have been expensive in hospital treatments, year long out patient programs, support groups, and meeting after meeting after meeting. There have been successes, and there have failures. We have watched his peers struggles, sometimes they succeed, sometimes they fail, and sometimes they die. I can’t say it hasn’t worked. He’s still alive. He’s graduated from high school. Those are successes. But he is struggling more and more and now there isn’t a surgery they can perform to take the poison out of him. There isn’t a song or a story I can tell him to get us through this. I’ve sung all my songs, and he doesn’t like my stories any more.

There is another way we can help him, it is loving but also it is difficult. It is not an easy way, but may be the only way to get through to him and help drain the poison himself. It won’t be any less painful that before, but it could save his life.

On facebook today there was a picture of a young family. Two happy looking parents, three young beautiful children. The caption was “Father needs new cancer drug to stay alive”. You want to help this man, his family. Cancer is an awful disease and we all know and love people it has harmed or killed. There are fund-raisers for beautiful children ill with cancer. Everybody wants to save them, and they should.

Nobody has fund-raisers to help pay for an addict’s treatment. Nobody puts photos of their addicted son, daughter, spouse, parent, or friend and asks for support. They just aren’t that likable. You don’t get the same good feeling about helping them, and addiction is every bit as much of a life threatening illness as cancer. It is an illness, (more about that here) and it affects more people that most of us realize. There are treatments, and people do survive. People who become profoundly grateful and beautiful, in the way only those who have been through hell and made it back can be. They go on to help others going through this nightmare. This isn’t something that people generally share because of the stigma associated with the disease of addiction.

So. There is another program, in Utah, that would help my son. One that could save his life. And I don’t know how we will manage it. I am so overwhelmed I don’t know how to begin to figure this out. I still want to pretend this isn’t happening, but t is, and I will have to figure this out too. And one day, maybe, we may save his life.

 

“How To Save A Life”  – The Fray   http://www.youtube.com/watch?v=DF0zefuJ4Ys

Step one – you say, “We need to talk.”

He walks, you say, “Sit down. It’s just a talk.”
He smiles politely back at you
You stare politely right on through
Some sort of window to your right
As he goes left and you stay right
Between the lines of fear and blame
And you begin to wonder why you cameWhere did I go wrong? I lost a friend
Somewhere along in the bitterness
And I would have stayed up with you all night
Had I known how to save a life

Let him know that you know best
‘Cause after all you do know best
Try to slip past his defense
Without granting innocence
Lay down a list of what is wrong
The things you’ve told him all along
Pray to God, he hears you
And I pray to God, he hears you

And where did I go wrong? I lost a friend
Somewhere along in the bitterness
And I would have stayed up with you all night
Had I known how to save a life

As he begins to raise his voice
You lower yours and grant him one last choice
Drive until you lose the road
Or break with the ones you’ve followed
He will do one of two things
He will admit to everything
Or he’ll say he’s just not the same
And you’ll begin to wonder why you came

Where did I go wrong? I lost a friend
Somewhere along in the bitterness
And I would have stayed up with you all night
Had I known how to save a life

Where did I go wrong? I lost a friend
Somewhere along in the bitterness
And I would have stayed up with you all night
Had I known how to save a life

How to save a life

How to save a life

Where did I go wrong? I lost a friend
Somewhere along in the bitterness
And I would have stayed up with you all night
Had I known how to save a life

Where did I go wrong? I lost a friend
Somewhere along in the bitterness
And I would have stayed up with you all night
Had I known how to save a life
How to save a life

How to save a life

get used to it

ImageWhen I was pregnant with Catherine my first child, I worked as a nurse in a very busy pediatric hospital in downtown Toronto. It was here I was the most perfect parent, before I had my own kids, and for the most part, when I was surrounded by people were making mistakes with their own. Things I promised myself that I would never do. We liked to say our ward saw everything (it was actually nicknamed “Nam”, as in Vietnam) and even now I don’t think we were too far off. There were so many worst case scenarios, shaken babies, cancer, home births gone wrong, babies born with AIDS (when it was new and unknown), abuse, neglect…. for me they all were warnings about what not to do. There was one baby, Sheeva, that I will always remember. Her mother was beaten so badly during her pregnancy that the baby had seizures before she was born, and her short life afterwards was little more than seizure after seizure resulting in increasing brain damage until she died. Heartbreaking, and terrifying.  When I was pregnant I would take just about every normal prenatal symptom as a sign of something dire, and I drove myself insane with worry. One evening shift Catherine was hiccuping or kicking or just jerking around as fetuses are apt to do, but I was taking care of Sheeva that night and was terrified my baby was having seizures. I was not my most rational when I was pregnant, and when it comes to my children, I’m still slightly manic. I turned to Emma, a nurse with two young children, and asked in a semi-panicked state if she thought my baby was having seizures. She said, in a very Emma like fashion, “well, she might be having seizures, OR it could just be hiccups”. Somewhat calmed I asked her how she coped with the constant worry that I was experiencing and she gave me the best piece of parenting advice I have ever received, “Get used to it”.

Get used to it. There would be no magic day, birth, grade 1, adolescence, adulthood that a parent gets to say, whew! that’s it I don’t have to worry any more, there would always be something new to worry about. Am I reading the right books to them? Should I let them eat fast food? Do I make them clean their plates? Do I let them cry themselves to sleep? When do I wean them? Is so and so a good enough friend? What about piercings? tattooes? sex?? and will I screw them up forever if I make a wrong decision along the way? What if I’m doing everything wrong? What if ??

When I was five months pregnant with Catherine I had a routine blood test come back as positive for spina bifida. Actually, it was a could be positive and more testing would be required. Again I had taken care of some extremely disabled children with spina bifida and in my young “all knowing” mind had decided that I could never “deal with it” in my own child. Things were so much easier, so much more black and white when I was younger and knew the answers to everything (like all of those “should I?” parenting questions that became much fuzzier with each baby). So they sat us down and explained our “options”, which were, level 2 ultrasounds, amniocentesis, and termination of the pregnancy (we lived in Canada where termination is a medical decision), and there I was, my previous black and white world turned upside down by a blood result. Everything I has regarded as unchangeable fact was now up for interpretation. It was excruciating. In the end I wouldn’t even take the risk of amniocentesis, and opted for the ultrasounds, and my daughter was born healthy with an intact spine. The prenatal worries I had were, mostly, erased by the time Catherine was a a couple of weeks old, but now I was on to a whole new set of worries, and I realized how true Emma’s advice was.

Get used to it. Yeah, well that really sucks.

I was sitting the other day thinking I just had to get through the next two months with my son and then I would get a break, and then it occurred to me that the worries would not end when (if) he got to boot camp, that if anything I would find a whole new set of things to worry about, and when (if) he finishes there was another set of even bigger worries waiting for me. Get used to it. Damn.

So this is life when you love. You are open, and it will hurt, it will hurt a lot, and the answer is not to close yourself up in hope of protecting yourself from the pain, the answer is to stay open, to be hurt, to be heartbroken over and over again, because this is what will help you be kinder, gentler, more empathetic, and able to deal with life’s heartache, because you don’t get to be alive without heartache. Closing yourself off and hiding from life’s worries and pains makes you hard, brittle and frightened. I know, I’ve tried, and it was horrible.

“The term “kintsugi” means ‘golden joinery’ in Japanese and refers to the art of fixing broken ceramics with a lacquer resin made to look like solid gold. Chances are, a vessel fixed by kintsugi will look more gorgeous, and more precious than before it was fractured. Some say we need to cherish the imperfection of a broken pot repaired in this way, seeing it as a creative addition and/or re-birth to the pot’s life story. Others say that when something has suffered damage and has a history, it becomes more beautiful.

And so are we, more beautiful with our wrinkles, our cracked and fractured hearts, and with our worries. This is life, get used to it.

Meanwhile the world goes on

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Graham grade 3

I like sleep. I like it a lot. So waking up in the dark a full hour before I had to was not my favourite way to start the day. Waking up frightened, with a cold, hard pain in my chest even less so.

What kind of mother kicks her child out of the house? Don’t answer that. I have several excellent, well thought out answers lined up beside me right now. I don’t like any of them. In fact, I have been glaring at their calm, all-knowing, smug faces for several months now. It’s no good. I don’t like where I am now. Sorry, I really really fucking hate where I am now and the decisions I have to make. That sounds better. I have two more, very difficult months in front of me and I’m already so very tired.

I love my son.  I don’t always like the young man who lives with me now. The one who lies and steals, the one I have to keep things locked up around. My family has to keep things under lock and key and we’ve not done anything wrong. It’s exhausting, but how can I send him out?

He “ships out” on October 14th. My son, Canadian like the rest of us, has enrolled in the Untied States Marine Corps. Not a future I would have picked for him, but more and more it is looking like the only chance he has to straighten himself out. Now I’m in the somewhat ironic position of trying to keep him qualified so he can, in fact, go to boot camp. How did I get here??

Do I ruin his best hope by kicking him out? What’s fair? I have two other children who do not deserve this life in limbo lock down. We have all put our lives on hold for almost three years tying to help him, and for what??

The thought of putting him out makes me physically ill. It makes me cry. It makes my chest ache. But shouldn’t it? Shouldn’t this be really fucking hard? What does it say about you if it is not?

My oldest daughter leaves for school half a country away this month. I’m sad, proud, scared, happy and about fifty other emotions about it. I’m not forcing her out. She’s growing and leaving on her own, and while it’s not an easy transition, it is an expected one. One I can talk to empathetic friends about. Who do I talk to about my son? Where is the “What to Expect When” book with its handy check boxes and explanations of life changes and physical symptoms?? There’s no Worst Case Survival article on this. Alligator attacks and quick sand, but no steps to take to ensure you will survive sending your 18 year old son out of your home. If only all I needed to do was to stay calm and lie flat.

Maybe that is the point. There is no right way to do this. Maybe you’re not suppose  to be calm. This sort of thing is suppose to hurt like hell if you’re doing it right. Meanwhile the world goes on.

Wild Geese – Mary Oliver

You do not have to be good.
You do not have to walk on your knees
For a hundred miles though the dessert, repenting.
You only have to let the soft animal of your body
love what it loves.
Tell me about your despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air,
are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting –
over and over announcing your place
in the family of things.