I attended a medicine conference at the University this past week.  Two days of information and learning.  I loved it.  Some of it was just interesting, transgenderism and cystic fibrosis, some of it left me in awe, liver dialysis post Tylenol overdose, and some of it was staggering, the link between oral care and hospital acquired non vented pneumonia.  The best session was all about central lines which is what we do in our department.  I feel energized with new knowledge and a desire to do better.  We even found new products to make our patients' lives better. 

The big guy and I leave for holidays next Saturday which I'm looking forward to.  Two weeks without an alarm clock.  I love my patients but need a break to recharge my batteries.  There will be mountains and ocean and waterfalls.  Spending time outside always make me feel better.  If I could I would start IVs outside in our healing garden.  Now that would be nice.

Katie turns twenty-three on Tuesday.  It's hard to believe sometimes.  She seems to be calmer on the new medication although she still gets anxious, the anxiety doesn't last as long.  Last week at Fort Edmonton she wanted to go on the train but as we were waiting, a group of woman and babies came to where we were sitting and got to close and loud for Katie.  One woman in particular was very close and loud.  I could feel the energy change and I know how Katie feels when that happens.  It was too much and she started slapping herself and crying.  We left, walking back to the main gate and she managed to calm down.  She also had different staff that day which makes it harder for her.  A very nice man but not her regular staff. 


It's a gray day here.  Supposed to rain which I hope it does.  We've had the driest spring in fifty years here and are badly in need of rain.  Time for laundry and cooking and cleaning, which strangely enough I enjoy.  Take care people.

I've felt like an outsider my whole life.  I don't fit in, not in my family, not with my peers, not anywhere it seems.  I do fit in with the big guy though.  He's an outsider too. 

When I was at Shirley's funeral on Monday I felt like an outsider again.  Listening to the eulogies I remembered the space between us that eventually became a chasm.  Shirley was Chinese;  her parents were refugees who came to Canada for a better life for their children.  They operated a dry cleaning business and the family lived in an apartment above the dry cleaning store.  Eleven people lived in that apartment.  Her parents spoke Chinese.  I remember one day telling Shirley how much my middle daughter hated me signing to Katie and how she refused to learn sign language.  Shirley was shocked.  I asked if she minded when her parents spoke Chinese to her in public when she was a kid and she said she hated it, but that it was different.  It wasn't different.  Kids don't want to be different.  They don't want to be set apart.  They want to belong.

Shirley belonged.  She was outgoing, smart and sociable.  She had a wide group of friends and was involved in everything.  She was also hard working, organized and very stubborn.  I was envious of her life.  I looked through my window at the constant stream of parents and children coming and going into her house and felt like an outsider again.  Shirley never made me feel like that, it was me.

As my marriage fell apart and my children went to hell in a hand basket, Shirley listened.   She didn't tell me what to do, she just listened. We didn't agree on child rearing but we respected each others ways. 

When we sold our house almost four years ago I kind of let go of everything, not intentionally but I did.  Maybe I didn't want the reminders.  That house was my home for twenty years, longer than I had lived anywhere else.  It's where my kids grew up.  I poured myself into that house and garden for years and then strangers bought the house and I was out.  I didn't like going back to visit neighbors because the new owners let my garden go to hell, which is no reason to not visit but it's the truth.

And then just over a year ago Shirley came back into my life again at the Cross.  She was different though.  We were more honest with each other.  I told her how envious I was of her life and she just laughed.  She was still stubborn but softer too.  She finally came up against something that was bigger and more resolute than she was.  Death was coming for her and would not take no for an answer.  Our conversations were sometimes like the old days and sometimes about life and death, always honest though.

Being at her funeral dredged up all these old feelings of being an outsider again.  I'm guessing a large portion of the world's population feels like an outsider at any given moment.  But I have only my own head to live in.  I've spent this past week thinking about my life.  I'm not very sociable and I used to blame it on my ex-husband or Katie but to be honest, I don't think I'm very sociable.  I enjoy spending time with people but only for short periods of time and then I need time alone.  At work I am very sociable as a nurse.  I love my patients and most of my co-workers and then I need to withdraw into solitude again to recharge my batteries.  But I need both.  I enjoy making others laugh and caring for my patients but I need time alone.  The big guy understands that. 

So here I am, still striving to understand and accept myself.  It is a lifelong process I'm thinking, at least for me. 

My work always puts my problems in perspective and helps me drag my head out of my ass.  Yesterday  one of our docs came in as a patient.  He said it was very strange being on the other end of care and that he feared he had left it too late.  Cancer is a nasty bugger.  My department has 71 people working in it.  According to the stats, 28 of us will develop cancer and 18 of us will die of cancer. 

It doesn't discriminate.  I had a patient yesterday who had cancer when she was four;  she's in her thirties now and it's back.  I've had patients as old as 92 and as young as 6.  We don't usually get children, they go to the University but children with brain tumors come to us for radiation.  It's not unusual to have patients the same age as my children. 

We have one young lady, I can't remember her age, but probably in her late twenties, she was diagnosed the day before her baby was born.  Her baby girl is seven weeks old now.  How this young woman doesn't cry every single day that she comes to us amazes me.  Yesterday I had an older woman, 75 who needed a central line.  We lay her down on the x-ray table and she started to cry.  I told her to go ahead and cry.  She was terrified of the line, didn't know what to expect and was shocked at how quick and easy it was.  She smiled when we were done. 

Another man yesterday that we put a port in was one of the nicest people I've ever met.  He was so gentle and wise.  He told us how much he loved his daughters and his granddaughter.  He shared his life view with us which was basically be kind to everyone, you don't know what they're going through. 

I get tired of bullshit at work but I never tire of my wonderful patients, even the tough ones.  Not all patients are so sanguine.  I've only had one horrendously angry patient.  His anger emanated from him in waves.  It wasn't the cancer though, I imagine he has been angry his whole life.  It was hard to stay with him though.  Brought back a lot of memories of my dad and I felt scared and defenseless again.  But that is rare. 

Mostly I just listen.  Sometimes I give hugs.  Often I give Kleenex.  And sometimes I cry as well.  As I tell my patients I am a weeper and that's okay. 

My life is pretty good on the whole.  I doesn't always turn out the way I think it will, rarely in fact, but I'm learning to be okay with that too. 

 

 

This is where I complain.

 

Where life is not as I wish it to be.

 

Where people do as they please.

 

This is where I learn to breathe

 

because my breath is truly all that

 

I can control.

 

This is where I hurt and

 

this is where I let go.

 

This is where I remember

 

that my children are not mine

 

but belong to the universe.

 

This is where I sigh.

I was going to answer Ain't No Shrinking Violet by email because what I was going to say to her sounds too horrific but then I changed my mind. 

Katie was a sunny, delightful little baby.  Always smiling and always a baby.  She didn't walk until she was three.  As she got older though her behavior got worse.  At first it was just small things like she pulled the neighbor girl's hair, but when she hit puberty at eleven the behaviors escalated and she took out the worst of it on me and her sister. 

When Katie was fifteen and a half we found a group home for her to live in.  It damned near killed me.  I felt so bad.  We moved her into a group home because my husband and I just couldn't do it anymore.  Our marriage was falling apart.  My son was lost to drugs.  Katie's older sister was acting out, drinking, dropping out of school, running away.  Katie demanded so much time and energy that there was virtually nothing left for anybody else in our family.  She needed one on one attention while she was awake and even then it wasn't enough.

The group home didn't go well and Katie's anxiety increased, her behaviors got worse and she was evicted from her group home.  I didn't know what else to do with her so I brought her home and my marriage ended then for good.  My husband did not want her home. 

We brought her home and I tried to find help.  I couldn't find a psychiatrist who would deal with a child with mental disabilities.  I took her to emergency and we got sent to another hospital where I was given a phone number for a crisis line that couldn't help us.  Katie's behavior got worse.  She pulled my hair, scratched me, pinched me, ripped my clothes.  She would attack me while I was driving.  One day she got hold of my hair, dropped to her knees and I went with her.  We were in the bathroom and my husband couldn't get into the bathroom to help me because we were blocking the door.  More than once while driving someplace with Katie I thought about driving into an oncoming vehicle, hoping to kill us both.  It was that bad.  I felt hopeless. 

We tried her on a new drug which had paradoxical side effects.  It didn't calm her at all.  Her and I ended up in West Edmonton Mall, her screaming and crying at the top of her lungs, me trying to get her through the mall without me or anyone else getting attacked by her.  By the time I got to the van I was shaking.  I drove to emergency and told the young nurse at triage that they had half an hour to get a psychiatrist to see Katie or I would abandon my daughter.  The nurse looked at me and said you can't do that.  I said I could and would.  Thirty minutes later a social worker was there to talk to us and then we had an appointment to see a psychiatrist and a team the very next day.

What I didn't know is that very same day, a man had killed his autistic son and then himself in the city because he couldn't get any help.  The next day we got help.  The help didn't do a lot but it gave me hope which is what I needed more than anything.  After a lot of prayers and a photo of the Madonna in my the northwest corner of my home (I was willing to try anything to get help), we found the agency that cares for Katie now.  They specialize in caring for people with behavioral problems.  Katie was seventeen and a half by then.

The group home where she lives now is really only a townhouse with one other young woman with Down Syndrome who has some very violent tendencies.  It's not perfect by a long shot but it mostly works.  The agency knows how much consistency and routine matter to both Katie and her roommate. 

A few weeks ago Katie saw her psychiatrist and was started on citalopram.  Her anxiety was less today and last weekend.  I'm also working hard on staying calm and watchful.  She doesn't have the capacity to self regulate and goes from happy, happy, happy to crying, screaming and slapping herself very quickly.  I've been watching her closely, holding her when she starts to get anxious.  I tell her over and over that she's safe.  I stay calm which for me is not easy feat.  I am a drama queen who has a hard time self regulating myself but I'm working on it. 

I guess my point is, raising a child with behavioral problems is dangerous and beyond difficult.  It's dangerous because it's so fucking hard and it's also dangerous because you lose hope and start to think that death is the better alternative.  There were so many times I wanted it just to end.  It takes a village to raise a child.  It takes a whole big city to raise a disabled child with behavioral problems.  None of us can do it on our own.  It's too big and too hard.  So my message to Ain't No Shrinking Violet is this, get help now, somehow, anyway you can;  for your life and for your son's life. 

I had a lovely few hours with Katie today.  Almost two weeks ago she was started on an antidepressant to see if that would help reduce her anxiety.  And yesterday I realized that I had to see my daughter as she really is, not how I want her to be.

I come by it honestly, this desire to see things as I want them to be and not how they are.  My mother was the same way.  Needless to say it leads to endless disappointment. 

Since Katie turned eleven, almost twelve years ago, she has been physically attacking me.  She pulls my hair, pinches me, scratches me, bites me, rips my clothes.  The hair pulling is the worst.  And every time she does this I am hurt both physically and emotionally because well, how can my baby girl hurt her own mother?  My feeling are hurt, every single time, for almost twelve years. 

Katie attacks me when she's upset, when she's anxious, when she's scared.  It's understandable and a part of me does understand that this is her acting out her feelings, feelings that's she unable to understand or even put a name to.  But another part of me is hurt and surprised.  So why would something that has been happening for almost twelve years be a surprise to me?  Good question.

It's a surprise because I don't want to believe that my beautiful daughter is dangerous.  But she is dangerous and I refuse to accept this.  It's funny because I always talk about accepting my daughter the way she is but I haven't really because if I had I would have been more careful around her, I would have understood how dangerous she is. 

So today we visited and for the first time I accepted that Katie is dangerous, that I need to be careful around her.  The big guy has known this since he first met Katie three and a half years ago but obviously I take a lot longer to catch on. 

And today, I don't know if it was the new drug or my realistic understanding of how dangerous my daughter is, we had a good day.  I didn't force things.  I didn't make her be what I wanted her to be. 

The hard part about writing this is also seeing myself as I am.  Deluded.  Unrealistic.  Unaccepting.  Bruised and battered from hitting my own head against a wall for years and years.  I suck at accepting what is but I am learning. 

 

 

This is my assignment today, to write about the good stuff in my life instead of just the bad stuff, to find balance in my writing and my life.

Two weeks ago we were here, me and the big guy, sitting beside the Athabasca River at four in the afternoon, enjoying the view and the sunshine.  We go to the mountains fairly often.  They fill up my cup but why do they fill up my cup?  The big guy says it's because I can't control things in the mountains which is true but there's more.  There's something humbling about the natural world.  It puts things in perspective.  Makes you realize how small you and your problems are. 

I love trees.  I really love trees.  To me they symbolize steadfastness.  They stand where they are planted.  They quietly do their thing as the seasons pass and when they die, they lay down and feed the next generation.  I admire them for that and for their astonishing beauty.  I'm a visual person and I drink up what they have to show me at any time of the year. 

As we sat beside the river we could hear the birds singing and not far from us there was a small herd of mountain sheep grazing, completely unconcerned with our presence.  The river was low because the snow pack is only just beginning to melt at the higher altitudes.  There were two young boys picking their way through the stones beside the river, just enjoying themselves, playing.  It is peaceful here.  I can breathe deeply and let go of things.  Nothing I do will change the course of this river.  It has been here for thousands of years and will continue on for many thousands of years after I'm gone.  I feel small here and blessed to see such beauty.