Monday, December 28, 2015

Angel Glacier, so named because of the arms that reach out on both sides. 

I am off work all this week which is lovely.  Time to recharge my batteries and tidy up my life.  New counters, sink and taps were installed in the kitchen today.  Tomorrow I hope to get the cracks in my windshield fixed.  I went shopping and bought myself three new tops, something I never seem to have time for anymore.  I have all these things I want to get done to what end I don't know because as soon as one item is crossed off my to do list, another takes it's place.  I'm not sure if I like that.  If I stopped, what would happen?  Nothing really I suppose.  The world would carry on.  Maybe all my doing is my way of avoiding looking at my own mortality. 

My back is killing me and I've had vertigo for a month now.  I've had vertigo since I was around nineteen.  It comes and goes, doesn't usually last for longer than a day or two.  Except this time it's been a fucking month.  When I lay down the room spins so violently I feel nauseous.   When I tilt my head down to look at the floor or tilt my head up to look at the big guy it spins but lasts much longer than when I lay down.  I stagger around like a drunk, clutching at walls and leaning against things.  It's awful.

I miss my friend Shirley.  I miss my mum.  I miss my daughter out in Vancouver.  And Katie keeps attacking me when we're out which hurts my feelings over and over again even though I know it's how she communicates but I have this belief that because I'm her mother she shouldn't be hurting me.  And when she pulls my hair it hurts so much that I start crying and yelling which upsets her even more.  We're quite the pair, the two of us.  Both of us knowing how the other will react and still unable to help ourselves. 

And on the up side.

Watched a very funny movie tonight, The Man from U.N.C.L.E..  Very enjoyable.
New kitchen countertops are installed.
Time off work.
The big guy asked me to marry him.
I said yes.
Get to take our granddaughter to Candy Cane Lane tomorrow night to see all the lights.
Making the big guy laugh.
Time to breathe.

That's all I got.  What are you thankful for today?

Wednesday, December 23, 2015

A Letter To My Younger Self

Dear Deb,

You're only twenty years old and I'm sure you think you know it all but you don't sweetie.  Even at fifty-three you still don't have it all figured out but you are a work in progress, always. 

Let's start off with children.  You're going to have a son within the next year.  I know you think a baby is just that, a baby, but a baby is a person.  You are giving birth to a person;  a person who will be affected by your decisions, who will depend on you to love him as he is, who will need patience and guidance and understanding for thirty-one years and counting.  He will have his own personality, his own likes and dislikes, his own issues and some of those issues will be with you.  Having a baby is far bigger than you ever imagined.  What you say and do matters to this little person.  He doesn't understand that you're tired or scared or overwhelmed.  He just knows that he wants to be loved, that he needs to be loved.  Do you best.  You will fail many times but still try to do your best. 

And what does a child need?  A child needs acceptance, affection, attention, appreciation and the space to be themselves.  It's what we all need, including you.  I know you didn't get this from your parents or your family.  It's not their fault, they never got it from their parents either.  I want to tell you now that you are wonderful just as you are.  You are emotional and that will make you a better mother and nurse.  You are often rigid and like to keep your life in order, that will help you to parent your third child, a disabled daughter who needs order to feel safe.  You are more patient than you realize;  it will take you five years to toilet train your disabled daughter but you will succeed.  You have attention deficit but it's not a deficit because it allows you to cook supper and notice what your youngest is getting into as well as carry on a conversation with your middle daughter.  You are hyperactive which will come in handy in caring for three children while your husband is often away working. 

Your sense of humor will carry you through some tough times and there will be tough times, dark times, but they will pass.  Understand that things always change.  I know you like things to stay the same but that is not how the world works.  All things pass, joy, grief, good times, bad times.  They all pass.  Let go of them.  It's okay.  Fear makes you hold onto things but let go of fear too. 

Don't believe everything you think.  Just because you think or believe something, doesn't mean it is true.  Change how you think and you will change how you feel.  Keep writing;  it helps you to sort out how you feel about things.  It doesn't have to make sense, just write everyday.  Find someone you trust to talk to.  When people show you who they are, believe them.  See what is right in front of you, don't look away.  You might not like it but really see how it is, not how you want it to be. 

Your mother was a great one for refusing to deal with reality;  it's how she coped with her life but you don't have to live her life, you can learn better ways of coping with what is.  Most importantly, learn to understand what you actually have control over, only your own thoughts, feelings and actions, nothing more.  You probably want to argue about this one and it will cause you the most grief in your life but I am telling you that I have lived much longer than you and I know it to be true.  I also know that you learn everything the hard way so I imagine it will take you years to learn this skill.

You are awkward and lonely right now.  Your social skills will improve, work on those.  Your shyness will also improve.  The introversion that makes groups of people so hard to deal with is part of who you are, it's okay.  I know you feel envious of others that have tons of friends but that really doesn't work for you.  You need a few close friends.  Find friends who love you as you are. 

Mostly I want you to trust yourself and your gut.  You're a smart, young woman but you often ignore what your gut is telling you.  Love yourself, just as you are.  You don't have to be anything but what you are to be loved.  Not everyone has to like you either.  And for god's sake, speak up.  Tell people what you really think, not what you think they want to hear.  If someone truly loves you they can take it. 

Tell the truth.  I know you lie because you want to avoid conflict and you want to tell others what they want to hear.  Don't do that.  It doesn't work and it always come back to bite you the ass. 

And lastly, listen.  Listen to others.  You don't have to agree with them but listen to them and try to understand where they come from.  Remember everyone is fighting a great battle, not just you. 

With all my love, Deb

Saturday, December 19, 2015

Katie is healing, getting better.  When we stopped by on Tuesday to check on her she had vomited everywhere.  Everywhere includes the walls in her case.  Poor bugger.  I changed her bedding and cleaned her room while her caregiver gave her a shower.  On Wednesday, her hand was still tender and she wouldn't take off her coat for her caregiver.  I convinced her to take off her coat by offering up a lovely, warm fleece blanket.  I haven't seen her since Wednesday.  Tomorrow, the big guy and I will pick her up and take her out for a few hours.  We'll drive, watch people, walk and have lunch.  And then we'll take her back home.  In my fantasies, I bring her home and she lives with us.  In reality, she pinches me, pulls my hair and bangs her face when she's upset.  She requires more attention than one person can give her and I still feel bad that she doesn't live with me.  I would love to tuck her in at night, but fantasies are not reality.

I took four hours off on Thursday and got caught up on life.  I shopped for last minute gifts.  Filled my windshield wash thing with fluid.  Bought cat kibble so that the cat doesn't starve to death, even though she is often convinced that her death from starvation is imminent.  Wrapped presents.  Cleaned the apartment.  Sent off a care package to my daughter in Vancouver which included homemade gingerbread men for her to decorate.  I feel peaceful.  I hate the feeling of undone things hanging over my head.  It causes me stress.

The laundry is done.  The apartment is clean.  Christmas cookies have been made.  Presents are wrapped.  Cards have been sent.  Snow has fallen.  And this morning we're off to see our granddaughter for a few hours. 

Life is not perfect or free of stress but it is good.  I'm thankful.

What are you thankful for today?

Sunday, December 13, 2015

This is Miss Katie's wrist.  It doesn't look that bad in the photo.  She has another staph infection.  When she's upset she bangs her wrists against her mouth.  The calluses and scars have built up over time.  She never used to do this.  You can see old bruises on her wrist.

She also has a callus built up on her forehead, except right now it's a huge sore because she hit her head so hard that she split the skin.  When she's upset she bangs her head against the floor or the wall, or another person's head if need be.  Katie gets upset a lot.  She is chronically anxious.  We tried weed and we have tried anti-depressants with only limited success. 

Katie also won't keep her fingers out of her nose.  She doesn't pick her nose, she just sticks her fingers up her nose all the time.  I think that's how she's reinfecting herself. This is either the fourth or fifth staph infection this year.  We tried decolonization which worked for about five months but now she has another infection. 

She saw a doctor at a walk in medical clinic on Friday who took a swab and put her on oral antibiotics.  I find walk in medical clinics to be quite useless but her staff had already taken Katie there.  The doctors in those clinics don't appear to really care that much, at least that's how I feel.  Anyway, she got started on the oral antibiotics and they are slowly working.  She had a fever Friday and Saturday but the fever is gone now thank goodness.  The swelling and redness are worse but it's not spreading.  It is however painful.  Katie doesn't usually complain of pain but she does get very grumpy. 

Infection spreading up her arm prior to antibiotics.


I did some research on recurrent staph infections.  Decolonization is not overly effective, especially with non cooperative patients, a category which Katie would definitely fall into.  She won't keep her fingers out of her nose and has small abrasions on her skin constantly from her self abuse.  I'm not really sure what to do.  I do worry about her becoming septic or her bacteria becoming antibiotic resistant.  I feel like I'm failing my daughter but I don't know what to do. 

Poor girl was crying on Friday when they took the swab, they had to poke the blister with a needle.  She was inconsolable.  She also had a fever and probably felt like shit.  Yesterday was the same.  When she cries, I cry.  Today she looked much better but was still crying because I put a bandage on her wrist.  She hates bandages, screaming, crying hates bandages.  But the wound is open and weeping now and I don't want anything else to get into the wound.  So the two of use have been crying a fair bit these past few days.  I feel helpless.

Friday, December 4, 2015