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. 

I had a meltdown at work today but I'm not sure why it happened.  I was working in our fluoro room, assisting one of the docs.  We had three patients this afternoon and the first two lines took longer than normal, which means I stood around in my lead for longer than normal which hurts my shoulders.  And I was having hot flashes under the lead, with my sterile gown, mask, surgical cap and sterile gloves on.  I could feel the sweat running down my back and my panties were soaked.  And I was hungry because I get hungry at 14:30 and need a snack but I couldn't have one because I was scrubbed in. 

So we finished the second patient at 15:00 and I took the patient up to the desk and there was my passive aggressive co-worker filling out her time sheets.  There's still work to be done.  There is still one more patient to go and I'm hungry and I lost it.  I also have a face that everything shows on it.  My friend asked me if I wanted her to do the last line and I said forget it!  I headed to my locker for chocolate and by the time I went back into the fluoro room, everyone was there which irritated me even more and I started crying, sobbing really.

I was not about to be labeled a cry baby or unstable or anything else.  I made myself stop crying, we brought the patient in and just as I was finishing draping the patient I started crying again.  So I had to stop and get undressed, blow my nose and scrub in again but I finished my fucking work.  Nobody can say I don't finish my work and I don't know why that matters to me so much.  The patient was a very sweet man who never knew there was anything wrong.  Thank god for masks.

So what's my problem?  I was hot and hungry and sore and tired.  But I think what got me even more is that I allow my passive-aggressive co-worker to push my buttons.  I have seldom met anyone more unaware of their surroundings and it even surprises me that she is able to drive to work.  Or maybe it's just the job she hates so much.  Maybe she switches off when she comes to work.  Whatever it is I find it offensive.  I love my patients.  I think the work I do is important and I also think that if you're going to do a job that you should do it well. 

So after work I came home and put my pyjamas on and hid from the world.  I made supper and repotted an orchid.  I ironed my uniforms.  I gave the big guy a massage because he's buggered up a muscle in his back.  But I still don't know why exactly I lost it today. 

On the weekend I had a very short, ten seconds, episode of double vision.  To be honest it was the most frightening thing that's ever happened to me.  I thought I was having a stroke.  I still have to see a doctor but it scared the shit out of me.  I've felt very mortal ever since Shirley died.  I've had an endometrial biopsy for unexplained bleeding which came back normal and a sigmoidscope for unexplained bleeding which shows I have hemorrhoids.  And now this and I feel like a hypochondriac and an old woman all wrapped up into one wet, weepy bundle. 

And I miss Shirley.  She listened and she always had good advice.  I trusted her.  I had a dream about her not long ago and she was laughing.  She had a wonderful laugh.  I'm glad she's happy but I do miss her.

I had such a lovely day yesterday.  I made brownies and did the laundry while the big guy vacuumed.  The bathrooms got cleaned and then I headed out to visit a friend.  I stopped to buy her a lovely orchid and some yummy treats from a local bakery.  My girlfriend who was supposed to die in February but outlived her stay in a regular hospital bed and has been transferred to palliative care.  I went to see her.  She looked lovely.  Her hair is growing back in, short and gray.  She had her makeup and jewelry on and I helped her get dressed.  We visited for awhile and I got to meet her sister and niece.  Then we made arrangements for more visits.

When I got home I prepped for supper.  The big guy's daughter and son in law, along with our beautiful granddaughter, were coming for supper.  I even had enough time to go pick up a new phone.  We had a lovely evening, visiting, eating and marveling at our granddaughter.  The cat was not quite so enamored by the baby, although the baby loved the cat. 

When they left, taking the last bit of brownies home with them I told the big guy what a wonderful day I'd had.  It was nothing special, it was just nice.  I got to rock and hold and chat with my granddaughter.  I saw my friend.  I fed those I love. 

I'm getting used to being called nana.  The first time the big guy referred to me as nana, I looked around for my mum.  I still miss her sometimes.  She would have loved to have a new baby in the family.  She loved babies and children.  Her first job was as a nanny and then she took care of her children and then her grandchildren for the rest of her life.  She loved having her family all together and feeding them.  I guess the apple doesn't fall from the tree. 

The face I love.

I think this photo was taken eight years ago which would have made Katie fourteen.  She looks younger than that to me.  I can't remember where the black eye and fat lip came from;  there have been more than a few injuries over the years.  If you look closely you'll notice that a part of her one front tooth is missing.  That happened when she was at a horrible school for three nightmarish months.  Her aide, a truly stupid and incompetent woman, put somebody's else pants on Katie that were far too long and Katie fell and smashed her front teeth.  Both front teeth are now dead and she had to have two root canals which meant two general anesthetics.  This was the only awful aide Katie ever had in school.  The woman tied Katie's hands behind her back one day to feed Katie lunch and told me about it!  She thought it was a good idea.  WTF!  And the woman was not fired even after I complained to the principal.  That's when we found a new school for Katie with a wonderful program that allowed her to be herself. 

I like this photo better.  Same age, no bruises.  Katie's on the train at Fort Edmonton;  one of her favorite places on earth.  And she doesn't have that anxious look on her face that is now often the norm for her.  If I could erase Katie's anxiety I would.  It started with puberty and has not abated.  In fact it seems to get worse each year. 

I remember when Katie was a baby I tried to develop a formula that would tell me what Katie's mental age would be when she grew up.  I tracked her developmental delays and made elaborate formulas because I wanted to know what the future would hold.  All for naught.  I have a twenty-two year old daughter who can't talk but who never stops signing.  She has an amazing memory and sense of direction, as well as a fully developed sense of humor.  She can't tie her shoes or understand abstract concepts but she understands people.  She can't talk but everyone knows her name.  One year we were in Sylvan Lake for a holiday, about a hundred miles south of here, and a woman on the beach knew Katie by name. 

I've slowly come to the realization that I have no idea what life or the future will bring.  I see that everyday at work.  People are living their lives, working, fighting, laughing, loving and then boom, they have cancer.  Which reminds me of the poem by Robbie Burns, "To A Mouse". 

But little Mouse, you are not alone,
In proving foresight may be vain:
The best laid schemes of mice and men
Go often askew,
And leave us nothing but grief and pain,
For promised joy!

I'm older now and I realize I have virtually no idea what will happen in life except that it will end in death which is freeing in a way.  I don't have to fight so hard to make happen what I want to happen.  I can give up control and expectations, a little;  I'm not that wise yet.  But ever so gradually I'm learning to let go.  Maybe that's what life is for, to beat the expectations out of us so that we can learn to just be.