A week and a half ago Katie had a meltdown at home, not sure why because I wasn't there, and during her outburst, she threw herself off a kitchen chair and landed on her left elbow, we think. 

Her staff didn't realize that she had broken her arm;  she complained of pain and they put some ice on it and gave her some Tylenol.  They didn't call me to let me know that she had fallen.

They next morning her arm was swollen and the team leader decided to send her to emergency and that's when they let me know that she had hurt her arm.  24 hours later.

We were short staffed at work and I decided to stay at work instead of sit in emergency all day but wanted updates.  She finally got some x-rays done at 2 pm and by 4:30 pm she was on her way home.  The big guy and I went over after work to check on her and she was having pain and had her arm in a half slab.  I gave her naproxen and tried to find out what happened.  Nobody knew exactly when or how she broke her arm.  I got an incident report and sent emails to the agency asking for more information.  

I wanted to know how my daughter broke her arm and why she was sent home with the only plain Tylenol for pain relief.

So the next day I happened to be off to take Katie to a psych appointment and talked to the team leader and found out that he thinks she hurt her elbow when she fell off/threw herself off the kitchen chair.  I was satisfied with his explanation but still wanted more information about follow-up care.   He said he would work on that and he did.

On Thursday I got a call from the ortho surgeon's office who had cared for Katie a year ago telling me she would be seen this week which was good. 

And then that evening I got an email from the owner of the agency that cares for Katie giving her notice of eviction with the #1 reason for evicting her as " The recent incident with Katie breaking her arm again.  It appears our explanation on how this incident happened was not met with much belief from her primary guardian (me).  The guardian believes Katie broke her arm not by tossing herself off her recliner but earlier in the day.  We won't know for sure exactly but the disbelief shows a lack of confidence in us."  The #4 reason was low staff morale.

Sadly this sent me into a tailspin of crying and much wringing of hands.  I didn't respond to his email until this week but I was shocked and saddened.  Then my ex-husband tore into me telling me this was all my fault.

I have managed to right myself this week.  Katie will not need another surgery thank goodness but the surgeon can't figure out how Katie managed to break her arm again without breaking the plate in her arm as well.  She said she's never seen that.  

I don't feel like I did anything wrong by questioning what happened.  In fact I think it is my responsibility to ask what happened.  I don't think there was any abuse.  I believe it was an accident but I wanted information on how it happened.  Katie has two full time caregivers and she still managed to break her arm.  

  

When you grew up with crazy, when you lived most of your life with crazy, you learn to second guess yourself.  When people always tell you it's your fault, you start to believe them.  But this week I stopped believing them.  It's not crazy to advocate for your disabled daughter.  It's not crazy to stand up to bullshit.  It's not crazy to ask for information, to demand an accounting.  

And always the big guy is there, supporting me.  He has my back.  He loves Katie like his own.  We're not the crazy ones here.

Baby steps people.  Always baby steps.

I'm trying hard not to think too much about Katie.  Her father is here this weekend and I imagine they went to Fort Edmonton Park which is her favourite place on earth.  The staff and volunteers there all know her by name.

I finally slept in this morning and felt like I had enough sleep for the first time in a week.  Made a run to Costco to pick up vanilla but the line ups, at ten a.m., where fifteen deep and I turned around and walked out.  There is nothing I want badly enough to stand in a lineup like that. 

I did pick up the photos of my granddaughters though.  My very kind in-laws take photos of our granddaughters and then send them to us.  It's heart breaking to see them grow up and not be able to spend time with them but it is wonderful to see them growing.

Then I went to Superstore to pick up a few groceries I started to have some free floating anxiety.  I rarely feel anxious, depressed is my preferred  mood disorder.  But I felt anxious and it continued all the way home.  Worry about Katie.  Worry about my son.  I talked to my middle daughter and that helped a little but the anxiety was still there.

So I dragged out the quilt I'm working on and finished it up.  It requires attention to detail but it's not difficult to do.  It keeps my mind a little busy, too busy to be anxious, but not busy enough to make me tired.  The quilt is finished and the anxiety is gone which is a nice feeling.

I invited a friend over for supper.  She is a nurse I've worked with off and on for the past seven years.  Off and on because she has bi-polar disorder and ends up on disability on a regular basis.  She's a lovely, smart, funny woman whom I love.  We chatted about life, work, children, hockey.  The big guy barbecued some chicken for us and we had a nice meal with good company.  My girlfriend had a home cooked meal, she's doesn't cook much, and it was so nice to see her.  She's been off work for ten months this time.  Bi-polar disorder is a difficult way to live.

I'm reading a good book right now by Ian Brown, Sixty.  It's about his life in his sixty-first year.  I'm enjoying it.

There is laundry hanging on the line outside, gently moving in the breeze.  The windows are open and there is robin perched on the poplar at the back of the garden, singing his heart out.  There is the scent of yeast in the kitchen as the sourdough rises yet again. This afternoon I will plant sweet peas, climbing nasturtiums and scarlet runner beans to attract hummingbirds.

Later on I'll take Lucy out for a walk and I'm guessing that the small lake on the path in the photo above will have dried up.  There is overland flooding all around the county but we are dry and safe.

Katie is doing well on her new meds, mostly.  The threat of eviction has been removed and there is a new case worker from social services working with the agency to come up with new ideas for dealing with Katie's behaviors.  I met the case worker on Thursday and fell in love with her.  She is kind, stubborn, opinionated, thoughtful and cares only about her clients, not the bureaucracy she works for.  She talked about the trauma that disabled people face throughout their lives and of course I started crying.  Even before meeting Katie it seemed like she knew Katie.  This gives me hope.

Work is much better which makes life so much easier.  There is still anger and despair and grief but I have enough in myself now to be able to carry it for my patients for the short time they're with me.  And there is also laughter and joy because life doesn't stop just because you get a cancer diagnosis.  It goes on, the good, the bad, the funny, the awful;  it all still continues.  Such is life.

Medicine Lake, the big guy's favorite place in the world.

We were in Jasper this past weekend to visit friends.  My girlfriend with metastatic breast cancer has been admitted into the hospital and is gently sliding down towards the end of her life.  One of the tumors in her brain is pressing on her right eye, causing the eye to bulge out and bother her.  Her speech is slightly slurred, her legs are swollen and she's taking small doses of morphine for the pain.  She dozes off and on, half listening to everything going on around her.  Sometimes she follows a conversation and sometimes her brain misfires and strange things come out.  Her filters are gone and she gets stuck in a rut, perseverating on something.

She sleeps at the hospital and everyday her husband takes her out for a daytrip someplace.  Last Friday was to Hinton for more quilting fabric.  She has made eight quilts since her brush with imminent death back in February.  I told her husband she wants more fabric because then she can't die.  She still has quilts to make.

She's also planning a camping trip this summer.  She wants to attend a wedding in Ontario.  She is full of plans, not ready to let go of the world yet.  And a dog, she wants a dog.  A bernedoodle to be exact, the size of a turkey.  Most of all she wants a future.

Her husband has arranged for people to be with her when he's not there.  She is surrounded by friends, family and love.  He is well cared for.  They live in a small town, a close knit community and his freezer is full of frozen meals dropped off by neighbors and friends.  He's taking care of himself too which is good.  He's taken an extended leave and spends his time with his wife, doing whatever it is she feels like doing that day.

My friend is only fifty-seven.  I hate cancer.  I know we all have to die but it still seems like a harsh way to die.  She has spent the past thirteen years dealing with cancer and now it is dragging her under.  It is unrelenting.  

There is a line in a song by Ed Sheerhan, Supermarket Flowers that rings true for me.

"A heart that's broke is a heart that's been loved"

My friend has been loved and has loved.  I will miss her.

Miss Lucy enjoying the sunshine.  She is the sweetest little dog, slightly neurotic but oh so sweet.  She's a rescue with an enlarged heart, a bad back and a sensitive stomach which sometimes leads to bloody diarrhea.  When she's very excited and running around like a maniac she will chase the cat and ultimately hump the cat, something which deeply offends the cat I'm sure.

We had another meeting about Katie.  Social services is now involved which is hopeful.  Social services provides the money to the agency which cares for Katie.  For the first time in years, somebody actually asked questions about Katie's needs.  The agency which cares for Katie has undergone some changes in the past nine months.  The original owner has retired and her son has taken over.  He is also a very kind man but not the same as his mother.  He has given Katie until the end of April for her behavior to improve, otherwise they want us to find another agency to care for Katie.  In the meeting on Thursday we all agreed that Katie staying where she is, in her home, is in Katie's best interests.  Now we just need to make that work.  Suggestions were made, a plan will be made, emails will be exchanged and hopefully something good will come from all this.

Katie was started on valproic acid which is mostly used for epilepsy but is also used as a mood stabilizer, something I didn't know.  She seems better.  Her behavior is better but time will tell.  And of course she is a young woman so her moods cycle along with her periods.  She was in her glory on Thursday because there was a room full of people who wanted to meet her.  She loves people and if she wasn't disabled she would have made a wonderful politician, although a mental disability doesn't seem to handicap some politicians (cough, Trump, cough).

I'm hopeful.

Pain is inevitable.  Suffering is optional.

I've seen this quote before but just reread it in a book I'm reading right now and it somehow struck a chord in me that it never has before.  

Note to self, remember suffering is optional.

My beautiful, wrecked daughter

heads touching

tears mingling

shoulders shaking

we hold each other

unable to fix

I can only hold on

unable to stop

you can only hold on

hearts breaking

I see the baby

that was placed 

in my arms

and you?

who knows

a smell, a touch

something familiar

drugs coursing

through your body

fear soaking

your brain

my baby gone

replaced by you

my beautiful,

wrecked daughter

I have to go to a meeting today with Katie's agency.  Not sure what will happen which makes me anxious.  One of the guardians of Katie's roommate has complained about Katie.  The cannabis has failed to help her as much as we hoped it would.  I'm not sure why. 

When I was a young woman I worked at a place called Michener Centre.  It was an institution where people with mental disabilities were warehoused.  I worked on a women's unit.  There were forty-five women in each half of our building.  The building was two stories and there were eight or ten buildings on site.  It was a warehouse and as such had minimal staffing, maybe three or four staff per side.  Most of the clients/patients were kept drugged into oblivion, at least in my opinion.  They were drugged enough so that they would sit or pace all day in a locked room with forty-four other women.  They were drugged enough so that they would eat their meals quickly, thirty minutes to serve and feed ninety women, including two cups of coffee each.  They were drugged enough to sleep in huge dorm rooms.  It was an awful place and I only lasted a year there.  Everything was locked and all the staff carried big old fashioned skeleton keys.

I volunteered for every outing that there was, dances, swimming, walks, drives, you name it.  I tried but that place sucked the life out of both staff and clients.

And that's my worry with Katie.  I know times have changed but still in the back of my mind is a drugged woman, sitting in a chair, drooling, oblivious ot what is going on around her.  Drugged into submission because it's easier, because it's convenient.  It's why I fight so hard to find something that will allow Katie to be herself, to exist as herself.  There are two women in my mind.  The Miss Katie that I carried in my arms, the one who always smiled, and the Miss Katie who screams and cries and hits herself and others.  I can't reconcile the two. 

I want Katie to enjoy life.  I want her to be free of anxiety, as much as is possible.  I want her to be in public because she loves people.  I want her to be safe.  I want her to feel safe.  I just don't know how to do this.