Sunday, April 25, 2021

I'm still reading Ashley Bristowe's book "My Own Blood".  She took her son and family to the Institutes for the Achievement of Human Potential in Pennsylvania and went through the course there, an intensive two week course that taught them how to help their son learn.  I vaguely recall hearing about this Institute when Katie was little but couldn't do the work.  I know my limits and I couldn't have done what the Institute requires which involves a lot of volunteers to run the program, diet changes and neverending work.  I admire people who are able to do this but I couldn't do it.

Ashley talks about how difficult it was to ask for help and how little her family helped her, not her husband, but parents and siblings.  It reminded me of how little help I recieved from my family with Katie.  My mum was fantastic but she was also sixty-eight when Katie was born and lived two hours away.  

Mum had a terrible time accepting Katie's diagnosis and now I get why.  She felt grief for her daughter and for her granddaughter.  Grief squared.  But that didn't stop her from giving me practical help like child care and doing the laundry and playing games with my other two children.  

My husband was a pilot and an alcoholic so he was often absent.  He was a good dad to Katie and more patient with her than I was, he was just gone a lot.

My two sisters never once offered to care for Katie, not even to take her for a walk to the park.  My husband's sister offered to take care of Katie once while Katie napped and then walked out of the house to go shopping, completely oblivious.  My brother had small children.  My dad didn't know what to do with Katie.  My family didn't know what to do with Katie so she was ignored as much as possible.  I never did have a lot of friends and the ones I had were all busy with their own lives. There was no help.

I was also the only caregiver for my parents who lived 150 kms away.  My dad died when Katie was seven years old but the last two years of his life were awful with frequent hospitilizations and increasing confusion caused by his failing liver.  We made frequent trips to Red Deer.  During the last nine weeks of his life I packed up my youngest two and made the drive to Red Deer twice a week to do what I could for mum.  My siblings didn't show up.  

It was the same when my mum's condition worsened and required more care.  My brother showed up for a few days but my sisters didn't.  When I did ask for help they had a family meeting and decided mum should go into a nursing home, a decision which was communicated to my mum by my oldest sister and which broke mum's heart.  Mum died six days later and that decision caused a rift in my family which is only now, eight years later, slowly starting to heal.

All of this was going on, including caring for my other two children, a son disappearing into a life of drugs and a daughter caught in the middle who acted out by drinking, while trying to raise Katie.  I did manage to learn sign language and gave her a language to communicate with but even that was a struggle.  The school board resisted teaching Katie sign language because it made life more difficult for them.  Katie still learned;  she's bilingual, her receptive language is English and her espressive language is ASL.  She continues to learn new signs to this day uses them constantly.  She also has perseveration which can be tiring and is a symptom of a brain injury.

The book reminds me of how lonely I was for so many years.  My best friend was my next door neighbor and we talked daily.  She kept me sane but she had three little girls and Katie scared them because was unpredictable, aggressive and pulled hair a lot.  I think most of my friends felt nervous around Katie because of her unpredictability.  You had to be on your guard all of the time.


Katie having a meltdown before the school bus arrived.

I'm enjoying this book but it's also dredging up a lot of memories and pain for me.  I'm thankful Katie is now happy and well cared for in a wonderful group home by women who love her.  I'm also thankful that I am not her primary caregiver anymore.  I love her more than you can know but she's hard too.

Thursday, April 22, 2021

Gracie worked nights last weekend so we had Jack and Miss Katie with us.  The weather was halfway decent, not very warm but nice and sunny so I took the opportunity to give Katie a haircut.  I prefer to cut her hair outside because I make such a mess.  Jack decided to get in on the action and Lucy, the beagle, was ever hopeful that one or both of them had some food.

Katie enjoyed seeing her nephew but seemed slightly put out that he had grown so much.  She was very gentle with him and Jack was so kind to Katie it made my cry.  He kept bringing her his favorite toys.

It was a nice visit.  Katie loves babies and I want Jack to be comfortable around his disabled auntie.  

Work continues to be difficult.  Our medical director is becoming even more awful to work with if that's possible.  The techs and the nurses are coordinating our complaints against him and documenting everything.  I am hopeful.  

I'm looking forward to retirement and have decided to retire in September 2022 if all goes well.  I still want to work casual but will be able to work less.  Working casual also tends to protect you from getting drawn into the politics that go on in workplaces.  

Numbers of Covid cases continue to climb here with a huge increase in variant cases.  I was lucky enough to get my first vaccination last week and we will take Katie today as she finally qualifies because of her disability.  Strangely enough Katie doesn't mind needles and loves being out and about, getting to see people and socialize.  It's been a hard year that way for her and she has done amazingly well, far better than I ever could have imagined.

Last week I heard a writer on CBC talking about her new book, "My Own Blood".  The author is Ashely Bristowe and she lives in Calgary.  She has a twelve year old disabled son and she is pissed.  

This is from the prologue,

    "If you're the sort who gets itchy when women swear or threaten casual violence for emphasis, parts of this story will make you uncomfortable.  If, at those moments, you pretend I'm the father of this disabled boy, a man at the end of his rope, it'll all seem way more reasonable.  Then ask yourself why that's necessary, and you'll get to some idea of the societal bullshit mothers of special-needs kids put up with when we have actual, honest reactions to sincerely fucked-up situtations."

I'm loving the book and I've already contacted the author on Facebook messenger and we've been talking.  I want to ask why the world is so afraid of angry women and then I think about what would happen if women expressed their anger for all of the shit we do every single day that isn't acknowledged or appreciated,  for the laundry that gets down and put away, for the clean toilets, for the meals made, for the clean sheets and towels, for the unpaid childcare, for the appointments made and bills paid, things would change and who likes change?  Certainly not the men in charge.  

It is so liberating to read this book.  I was angry for a long time after Katie was born.  Angry that a doctor would be so nonchalant telling me that my beautiful one week old baby might end up blind.  Angry that another doctor told us that Katie might never walk.  Angry that my then husband told me he never wanted a third child, after the two previous conversations with doctors.  Angry that other women had normal babies.  Angry that I would have to take care of this little girl for the rest of my life.  Angry that all the dreams for my baby died overnight.  Angry that I was alone and isolated and had no help from my family, except my mum who told me on a regular basis that Katie would eventually be alright because my mum had her own grief to work through.  Just generally angry, for a long time.  Grief takes time to work through and I understand that now but at the time, I didn't.

So, I'm enjoying this book, almost thirty years after I went through what this woman is going through.  I don't feel so alone.  My feelings have been validated instead of swept under the rug or filed under bitchy mother.  It feels good.

Saturday, April 17, 2021

I've made two more batches of cinnamon knots this past week.  They do seem to help somewhat with depression although my pants are getting tight.  My neighbor is enjoying the cinnamon knots as well because I share them with her.  We really don't need to eat a dozen cinnamon knots and they're much better on the first day.

We had a coffee table that was made of glass and metal and we finally decided to switch it out before Jack banged himself too badly on it.  Katie had a dark brown coffee table that she took apart, so the big guy put it back together and I painted it white with chalk paint and then put wax over the paint.  Turned out okay.  Jack was surprised by the switch up and kept calling the metal and glass coffee table, his table.  "My table".  He also tried pronouning pterodactyl.  He's a fan of dinosaurs and outerspace.

The snow is pretty much gone again and I'm going to take the dogs out soon for a walk at the dog park.  Fresh air and sunshine, good for the soul.

A goodish week at work but a lot of sad stories from patients.  I stand or sit and listen.  We all need to tell our stories, especially the heartbreaking stories.  My employer doesn't understand that part of caregiving is listening.  Grief lives in our building and requires as much care as shortness of breath and pain.

One of my favorite young patients was in this past week.  She is twenty-nine years old.  As a child she had leukemia or lymphoma, can't remember which, and was treated with radiation to her chest.  Now she has metastatic breast cancer.  When I saw her she had yellow eyes, a belly and a cough.  Her cancer has spread significantly.  Her liver is filled with tumors and she has fluid around her lungs which needed to be drained as soon as possible.  We got that done for her but it will keep happening until she dies.  She is a sassy young woman and shares my middle daughter's name.  Her mom came with her this week because now she needs a wheelchair to get around.  She knows she dying and she's still full of piss and vinegar.  

I bought more fabric today for my next quilt.  Katie has a new, bigger bed, a queen size now which she loves, so now she needs a queen sized quilt.  Orange is her favorite color and it goes nicely with blues.  It's springtime so I won't have much time to work on it but when I do have time I'll be ready.  It will be a simple nine patch quilt, which is just small squares put together.

A quiet day which the big guy and I both need.  The house is clean and I'll have time to spend outside in the garden before it snows again tonight.  Jack comes after supper to spend a couple of nights with us.  Katie will get to visit with him tomorrow which will make her week.

Slowly recovering from the last bout of depression, fucking black dog.  

Wednesday, April 14, 2021

We had a snow storm last weekend which is almost completely gone now.  I'm still feeling down but it's improving.  My depression is starting to feel like a cold.  I can feel it coming on with increased stress and when it reaches it's peak, I feel dead inside and then I slowly start to recover.  I know it's not completely gone because I can still feel it on my face, under my eyes.  That sounds weird but it's how I can tell I'm depressed as opposed to tired.  But I'm recovering from this last go round.  I can smile again and even told jokes at work yesterday. 

On Monday I found out that I had been exposed to asbestos twice in the past couple of years.  Some of our ceiling tiles had been disturbed in the past two years and rained down vermiculite on our work space;  I contacted FME before cleaning it up.  FME assured me it was just vermiculite, no problem, so I cleaned it up without a mask or gloves.  Then on Monday I found out from my manager that the vermiculite is contaminated with 3% asbestos.  There is construction going on right now because of a new system that is coming next year so the electricians had to go into the ceiling and the vermiculite was disturbed and then needed to be tested.  Asbestos.  Really?

So it's been a shit couple of weeks but it will get better.  

I know my son is a trigger for my depression.  I know it and still it gets to me.  Must work on that.

This pandemic and the completely inept dealing of it by our Premier is a trigger too.  I feel frustrated and disrespected.  

Today I'm off and making cinnamon buns.  Later I'll take the dogs for a nice long walk.  The birds are singing their songs of enticement, trying to convince the ladies to like them.  And some humor, because humor really is the best medicine.

Sunday, April 11, 2021

My funk has still not lifted and it feels like it is transforming into depression.  You have no idea how much I hate depression.  It drains all of the color and beauty and love out of life and makes me feel dead inside.  Everything becomes difficult and overwhelming.  Nothing good can ever come again.  Of course that's not true but it is what it feels like when depression descends.

We took our grandson, who I shall name Jack from now because I'm tired of referring to him as the grandson or the little guy, to visit his father yesterday.  My son never showed up.  Nothing.  Not a word from him.  We don't tell Jack we're going to visit anyone so not a big deal right now.  My son has gone silent again so no idea what's going on with him.  I try not to let it  bother me but obviously it does.  

So we had Jack yesterday and decided to walk to the park before the storm started.  The skies turned quite dark and eventually it started snowing and turned into a white out.  There was thunder and snow, a new combination that we're not used to here.  We dropped him off with his mama and had a quiet/dull evening.  I'm tired of the pandemic too.

Swings at the park.

 Soccer pitch behind our house.

Things I'm thankful for today.

Visit with Katie.

The snow is melting.

The laundry is done.

Friday, April 9, 2021

It's the little guy's birthday today.  Two years ago he made his entrance.  He spent the night with us last night as Gracie was too stressed out to deal with things.  By deal, she means clean her house because her family is coming today to see the little guy.  She also bought him a big boy bed which she's quite proud of;  it looks like a car.  Hopefully she gets the stench of shit out of his room.  I imagine it's ground into the carpet along with everything else.  The little guy also arrived with an awful diaper rash too.  Gracie thinks poop is gross and doesn't like cleaning him up so he sits in it and it burns his poor little bum and balls.  Nana cleaned him up well, put on some cream and it was better this morning. 

Gracie called this morning and she sounded drunk already, or maybe it's just ativan, I don't know.  Tomorrow my son wants to see the little guy and give him presents, child support would be better than presents in my opinion.  My son wants to go to the library which is closed and we're going into another lockdown today which means we can't meet at the mall food court either.  This causes me no end of stress, arranging these visits which usually end up with my son angry at one or all of us just because he can't plan, organize or get his shit together.  I dread the visits.

So today I'm in a mood.  I've already yelled at the dogs twice this morning.  It's sunny but cold outside so they're in and out and in and out until I yelled at them.  Then they just looked at me and wagged their tails and I apologized to them.  I'm not even mad at them, just stressed.

We have an outbreak at work of a variant of concern.  We found out on the news on Tuesday after work.  My mother in law called me to ask if we were ok.  Finally we qualify for the vaccine but I'm angry that it took an outbreak to get us vaccinated.  I feel disrespected, again.

And then our medical director was being an asshole, again, this week and was harassing one of the x-ray techs, in front of me and the patient.  The tech and I both complained and the doc must have been talked to because yesterday he was nice as pie to me, the tech and the patient.  He's liking living with an abusive or alcoholic person.  They blow up and then apoligize and promise they'll do better and things will be better but things are only better for a week or two and then they go downhill again and he continues to get worse and worse.

The x-ray tech is very hard of hearing and wears hearing aides to help with that. The doc deliberately talks softly to her so she can't hear him;  the tech is who drives the x-ray machine during the procedure.  He does this all the time and everybody knows this.  I advised the tech to make a complaint about discrimmination on the basis of disability because nothing else has worked in the past.  My employer has a policy of no discrimination, blah, blah, blah, which of course is enforced when it suits.  He's a doc so his shit doesn't stink.  He disrepects everyone in our department, even the other rads.  He is an angry, scared little man who likes to bully people so he can feel in control and feel better. 

So I'm angry and I want to scream and cry and break things.  I'll just go for a long walk though with the dogs and make them happy and make myself feel better.

I finally finished up the quilt for my adopted granddaughter.  She loved it and called me on Tuesday to thank me.  We haven't seen her since last July and I miss her.  Her mama is one of the nurses I work with and I adopted her as well.

I feel a little better getting all this off my chest.  It's a lot to carry around and it drags me down, especially the crap with the little guy's parents.  He deserves better.  

Update.  I worked in the yard, took the dogs for a walk, made some cinnamon buns and shared them with the neighbor.  Some of the funk has lifted.