"Change, when it comes, cracks everything open."
Dorothy Allen

Wednesday, June 26, 2013

Goin' Fishin'

This Sunday, I am going fishing with my dad.  We are doing a charter fishing trip for salmon, just like we did 2 years ago.  I am really looking forward to it.

My mom and brother went in on it this year (my dad is impossible to buy for, so everyone always jumps at a good idea.)  I booked it for 2 people, since I didn't want to assume that I would be the one going. 

However, at his birthday dinner, he did ask me to go.  Granted, I told him about 4 times that I was available.  And I brought up how much fun it was last time.  Oh, and did I mention that I was available?  Really, the man had no choice.  I should feel guilty about that.  I kinda do.  But not too much.

I think it will be fun, as long as the weather holds out.  Last time, the weather was gorgeous, and we had a terrific time.  We caught fish like crazy for the first 3 hours, and then the last hour was slow, so we got to enjoy the cruise on the boat, the sun, the wind and the company.

I have always fished with my dad.  I have lots of memories of fishing when I was a kid.  We caught giant channel cats down in the Whirlpool.  We caught sunfish and crappies in every little stream in our region.  We would fish for bass sometimes, and in the fall we would try and catch the salmon run.  In the winter, we would go ice fishing, in the spring, we would go on the smelt run.

Most of my memories of my dad revolve around fishing.

He has been taking my kids fishing.  Neither of them as into it as I was...but I think there were times when my memory of how interested I was in the fishing is a bit inflated.  I know there were times when the sand dunes at Queenston docks beat out waiting for a bite at the end of the pole.   Sawyer is getting to an age where I think it will start being more fun for her.  If she could only learn to keep the hook in the water for longer than a minute or two.

Fishing is a family tradition.  One that I gladly pass on.  I think this summer, I am gonna polish off my poles, dig up some worms, and take my kids fishing.

But Sunday, I am gonna let my dad take his own kid fishing.

Wish us luck.

Rosie N. Grey
The N stands for "nets and hooks, worms and fish".

Tuesday, June 25, 2013

Bad Day

We all have them.  I just had me one.

The worst part is...nothing particularly bad happened.  I worked from home, Sawyer went to school.  Sebastian actually spent the morning away from the TV.  I stuck to my new diet, even though I am still learning.  I got a bit of cleaning done, and made a good dinner for the kids.  The house is *relatively* clean and the laundry is kinda caught up.

See, nothing horrific happened.  I still consider it a bad day though.

Work was....work.  Sigh.  It is frustrating and disorganized.  The people I work with, with very few exceptions, are exhausting.  I want so much more in my life, I hate that I am stuck here, spinning my wheels, being fruitless and fearful.

My frustration from work carried over into home.  Sawyer is trying on the best days.  She is at the stage where she very literally is never, ever quiet.  We play the quiet game with her sometimes.  Her record is 9 seconds.  She physically can't do more than that, without talking.  Sometimes, most times, she is funny and hilarious and I can just laugh at the ridiculous and amazing things that come out of her little brain.  But on the wrong day, her constant need for validation and recognition, her endless questions and attention seeking, her need for ongoing physical contact- it drains me (as I type this, she is beside me, fresh out of the bath, leaning on my arm so she can see the words I am typing, even though she can't read them.  I have an ice cube tucked in my elbow, because she says it needs to be there, because she is a doctor, oh wait, let's play school, my hair is wet, where is my spray....Do you see what I mean?)

After a day like today, when I am dealing with fully grown, and supposedly functioning adults that can't take care of themselves, the seemingly incessant needs of my children wore on my last nerve.  I found myself snapping at them, on the verge of yelling and real rage.  I caught it in time, and managed to make some space for myself, by doing laundry and cleaning the bathroom.  When I came back, I was better.  Not good, but better.

Maybe part of it is because I am tired.  I can't remember what it is like to not be tired.  Tired in my body, in my brain, in my soul.  I have had recurring dreams, where I lose my job, where I have to train my replacements.  I dream that I am going on a vacation, only at the last minute to find out that even though I was invited, no one bought my ticket, because they really didn't want me there to begin with.  I dream that I come home and my house is so full of junk, that FACS is coming to take the kids.

Yeah, it doesn't take a lot to read between the lines on these.  Feelings of insecurity, of inadequacy, of being out of control. 

I have been tackling things on my to do list.  Instead of feeling good about that, it makes me angry that it is still kicking around, waiting to be done.  My brother has pretty much finished his work in my yard.  I am incredibly grateful, but also disconcerted because there is so much left that I want to do.  No money or time to do it though.

So, yeah, pretty much a pity party all day long.  And then when I think that, it bothers me that I can't legitimately feel bad about some of the bad things that happen in my life.  I get resentful that I always have to be "fine", that things are "ok".  Sometimes they are, well and truly, and sometimes they are way, way better, right into the world of awesome.  But sometimes, they are not. 

So, anyway, I had a bad day today, for no good reason.  But I am going to try and remember some of the good things that happened.  Maybe it can change from bad, to not so bad.  God forbid, maybe even good.

- found $20 today
- found a winning lottery ticket
- Sawyer had a bath and let me wash her hair, without much fuss
- Sebastian has been pretty good today. He did outside time without fighting me
- The dining room table is cleared off
- I made it to the bus stop in time to sit in the sun/shade a little bit
- I got to work from home
- I stuck to my new diet
- I am not eating crackers right now, even though Sawyer is right beside me eating them
- I mopped the floors
- I vacuumed
- Sawyer's floor is clear.  Nothing else is clean, but at least the floor is
- I got to sleep all night in my own bed
- I got to turn the air conditioner off today and open the windows
- Dinner was pretty good
- Adam laid down mulch today.  It looks great

That's it for now.  Some days, you just have to cut your losses.  I am going to finish the laundry, start my new porch sign and go to bed early.  Tomorrow just might be a better day.

Rosie N. Grey
The N stands for "nincompoop".

Thursday, June 20, 2013

Last Day

Today was Sebastian's last day of this school year.   He was pretty happy about it, as would be expected, but not quite as happy as he has been in previous years.  He is just excited that he gets to spend tomorrow at home with me, as I am working, and he gets to watch TV.  I haven't told him yet that I am going to take him to a matinee this weekend to see Monster University as a celebration for finishing the school on a high note.  We will save that little tidbit for later, or I will never hear the end of it!

As you all know, Sebastian attends a private school called Julien School for Alternative Learners (previously known as the Little Brick Schoolhouse).  This was his first year there, and my first year dealing with tuition and learning the ropes of being outside of the regular public school board.
Every Friday is community day. 
One of their community trips was to Geoff's comic shop. 
How is that for an awesome school trip??
Working at the comic shop.
I have talked a bit in the past about his experiences with school- how much he hated it, and his teachers, the struggle, the fights, the failures.  This year was so different.

When you have a special needs child, you have lots of meetings.  Lots.  Most of them are useless, you really don't do much but reclassify your kid, so that the school board can get the funding that they need.  Or the teacher talks to you about how your kid doesn't do what he is "expected" to be doing, because of A, B and C.  Or how the goals they have set for your child, arbitrarily and without your input, are really reflective of what your child is capable of and how it isn't practical to expect too much or set goals too high.

I am sure this isn't everyone's experience.  But it seemed to be mine.  Pardon the cynicism.

But once a year or so, you have a meeting where you are asked to define your goals for your child.  I hate this meeting.  My goals were always simple.  Get him to pay attention and participate, even a little.  Help him read.  Get him to print his name.  Anything normal would do just fine.

Fast forward to this year at Julien School.  Our "goal setting" meeting rolled around.  And when they asked me what my goal for Sebastian for this year was, I was speechless.  I had nothing.  Nothing.  Everything I normally said, he was already doing. 

Me being me, tough and resilient, always prepared, did the only thing I could think of.  I burst into tears.  Of course I did.  Sheesh.

What I told them, was that I really had never had goals, not real ones, for Sebastian.  Goals mean looking ahead, and working towards something.  You have to have faith, and strength and hope to have a goal.  After only 3 years in the DSBN, I was out of that, where school and Sebastian was concerned. 

They clucked at me, and soothed my frazzled self.  They understood but also chided me, gently.  "You set your expectations too low.  You need to change that.  You need to let Sebastian surprise you, you need to challenge him and let him rise to that challenge.  He doesn't achieve, because you don't expect him to achieve."

And as incredibly hard as it was to hear that, they were absolutely 100% correct.  So, we have been trying to change that. 

So, here we are, 10 months later, at the end of his first year of his new school. He is amazing.  He surprises me every day.  I hope I am surprising him too, with what I expect.

Through the summer, I am setting a curriculum of learning for him, to keep him in the habit.  This will hopefully give me a bit of a taste of what homeschooling is like.  There are a million resources available for free online. It will take a bit of work, time and dedication (not to mention a printer) but I think I can put together some lessons, to help keep him sharp.  Keep him learning.  Keep my expectations high.

Recently, I was asked by the president of the school to speak as a Julien School parent, at their recent rebranding celebration and enrollment drive.  I agreed, and was the only parent speaker (that caught me off guard!  I expected to be one of many!)  The other speakers covered everything important- what and how they teach, the reasons behind it.  Their flexibility and experience. The costs.  Just before me, one of the assistant teacher spoke and read a piece she had written on change, and how change, seen so often as a horrible thing for autistic kids, is really an amazingly positive force of nature for the Julien  School kids.  (yeah, I cried again. I recognized when she was talking about Sebastian, of course.)  I got to go last.

If I do say so myself, I brought the house down. In a good way.

I started by saying that while there had been a lot of amazing and important information shared with them already that night, I was, in my own humble opinion, the most important speaker they were going to hear.  Because I was them.  I was the parent sitting out there, absorbing, trying to make the right choice, for my child, for my family.  And wondering just how the hell I was going to make it work (they laughed here, so I knew I was good to go. :)

I spoke a little about Sebastian's journey towards the Julien School- how we started therapy at 18 months, transitioned to the Niagara Children's Centre for fulltime therapy and school when he was 3, and for the first 4 years of his education, we were spoiled rotten.  Then we moved to the DSBN and things when downhill.   I was good, and didn't name names, or point fingers, but said that Sebastian and public school weren't a good fit, for a number of reasons. 

First day of school
Julien School, Sept 2012
And then I talked about my conversation with Camille (the president and founder of the school.)  I said that we were into Sebastian's 3rd year at school, and things weren't going well.  We wanted to take him out, but didn't know what to do.  I didn't feel qualified to homeschool him, and didn't have the time.  We were lost.  And one day, in December, Camille, who knew everything about Sebastian- his strengths, his weaknesses, everything, started talking to me about an idea she had.  An idea for a school.  And as she talked, it sounded better and better.  And (I said), I will never forget what she said to me next.  She looked me in the eye and said "Anita, Sebastian would be perfect for this."

Up until this point, Sebastian had never been perfect for anything.  He was always too slow, too different, too unfocused, too young, too old, too..whatever.  He didn't fit anywhere, except with us, his family.  And now?  Now, he was perfect.  For something. 

I hadn't even checked with Geoff yet, but I was ready to sign him up.  If I had had to, I would have given her a check that day. 

When I shared this story with the group, I cried.  A little.  They cried too.  A lot. 

mother effing fractions. 
Slice of fried gold.
I talked about the changes.  How he couldn't print his name when he started.  Now he prints for fun.  Just cause he can.  I talked about how on his last IEP, one of his goals was to count to 20 (ridiculous I know.)  The night he brought fractions home as homework, I literally sat at the kitchen table with him, and cried.  I wept, because I never thought I would see that.  I wept because someone, somewhere, was expecting my son to do great and powerful things. Like fractions.

By the end of the speech, people in the audience were crying right along with me.  The lady sitting behind me, touched my shoulder and told me that I had sealed the deal- she was enrolling her son that night.  Strangers hugged me and thanked me.  The teachers were thrilled.  Camille told me she wanted to take me on the road with her.  I told her my appearance fee could come off the top of my tuition. 

And now, it's over.  For a while. 

For the next 2 months, I don't have to think about school.  I don't have to pack a lunch (which, irrationally, I hate doing.)  I don't have to rush in the morning to get him up and dressed and fed and out the door.  For one whole month, I don't have to worry about tuition (first cheque is due August 1.  Yippee.) 

I am grateful for this year.  I am grateful for this break.  All and all, I am just completely and totally grateful.  For Sebastian.

 Rosie N. Grey
The N stands for "next September is soon enough."

Wednesday, June 19, 2013

Steve Miller and Slurpees

Most nights, I get cravings. 

Part of it is me trying to eat better, knowing that there are things that I can't or shouldn't have anymore, so automatically, I want that thing.  RIGHT NOW. (read my post about now vs later for more insight into that.)

Sometimes, though, it will be an association thing.  I will cut the grass or garden in the hot sun, and automatically want a beer afterwards.  I will smell someone BBQing and want ribs.  Stuff like that.  Those associations are fun and I like giving into them.

The other night, I wanted a Slurpee. 

I normally drink diet pop.  Diet Pepsi is my favourite.  But when it comes to Slurpees, I like Coke.  The real stuff, frozen and packed with ice.  I heart them so much.  I try not to have them very often, because my stomach usually starts to hurt within 5 minutes of starting and I get all jacked up on caffeine and sugar, so sleep isn't really an option for a couple of hours. 

But oh, the joy.  It is cold and icy and wonderful in a cup.  And it brings back so many memories.

As I drove to our closest 7-11 to get my fix, I realized I was driving with my windows up.  That is unusal for me.  As soon as it is nice in the spring, I roll the windows down, so I can smell the breeze, feel the warmth of the sun and drink it all in. It is one of my favourite things in the world.  I usually get a driver's tan- from the elbow down, on one arm, as it hangs out my window.

So, I got my Slurpee, and headed back home.  Window is down.  Radio on.  Steve Miller came on the radio.  Then Bad Company.  And like a slice of sunshine, like a warm summer breeze, the memories came back in.

I remember driving with my friends when I was 17 years old.  I remember what it felt like to have a cold pop between your knees, your shoulders burning comfortably with the sunburn you got earlier in the day.  I remember the feel of your hair, curly and long and messy, blowing like crazy in the wind coming through the window.  I remember knowing that the boy in the backseat is watching you laugh, is holding his hand, so close to yours, but still not touching.  I remember those butterflies, when you would smile. I remember flip flops, and sandy feet.  I remember cutoffs and sweatshirts to stop the chill.  I remember what it felt like to sit on the hot trunk of a car, still holding the heat from the day, as the day turns to night and everything cools off around you.  I remember how the last hour before curfew was always the best.  Things started happening, and good ideas were born.

There was a soundtrack to that time.  I sang along to bands and songs that can raise a lump in my throat today.  I see certain people, from that time, and a song pops into my head.  I see those people the way they looked at 18. 

I miss that time, with all my heart and soul.  When I worry about my bills, and my job and my kids and my health, I remember what it felt like- Summer.  Steve Miller.  Slurpees.  I feel better.  Sad, nostalgic, but better. 

Because I had those times.  I lived them.  I have the memories, so that means they were real.  I appreciated them enough that I have a special place in my mind for them. 

And I will always have Slurpees.

Rosie N. Grey
The N stands for "nostalgic".

Summer Loving...AGAIN

So, for the past couple of summers, I have created a list of things that I want to do, accomplish, go, become....whatever!  Just stuff that I want to have happen in the few, short, intense months we Canadians call summer. 

Since I love lists so much, I am gonna do it again.  Here is my 2013 Summer List of Awesome.

1. Plant a garden
2. Go to a "pick your own" and get something. 
3. Make jam with the something that I got at the "pick your own"
4. Have bonfires all the time
5. Build my backyard beach
6. Use my backyard beach
7. Put up the pool
8. Use the pool- all the fricking time
9. Work on school work with Sebastian.  Test out what it is like to homeschool
10. Get the kids doing their own chores.
11.  Purge everything.  Purge, purge, purge.  At least the linen closet and the storage in the basement.
12. Go to an outdoor concert
13.  Have a girls night/day, complete with fruity drinks, awesome music and lots of laughs
14. Make a shit ton of signs to sell for Sebastian's tuition
15.  Go to a carnival
16.  Bake a pie
17. Go to the beach
18. Go camping
19. Go fishing
20. Take one whole day.  Just drive. 
21. Go on a date with Geoff
22. Take the kids for a hike.  Teach them stuff that I know.
23. BBQ for family
24. Garage Sale. Find a treasure or two
25. Get my taxes done
26. Organize my paperwork to prepare for next year's taxes.
27. Get my laptop hooked up to a printer.
28. Get a printer.  Oh, and ink.  And paper.  Yep.
29. Read an amazing book.
30. Go to the zoo.
31. Eat ice cream.
32. Go for a bike ride.
33. Get a sunburn and tan lines.
34.  Start exercising again. 
35.  Cut myself some slack.
36.  Take some time to just be by myself.
37. Take a nap in my hammock.
38. Go to the drive-in. 
39. Learn something new.
40. Reconnect with friends.
41. Blog.  A lot.
42. Start learning how to take pictures.  Learn from Geoff, from books, and online.
43. Take at least one good picture.
44. Make some suntea (stealing it from my mom equals making it myself)
45. Find a new restaurant to try.
46.  Have beers on a patio.
47. Build something amazing for Sawyer.  Something from Pinterest maybe?
48. Take the kids to the park.  A lot.  Like, all the time, if they want.
49.  Stop sweating the OT.  Leave it be.
50. Get a pedicure.

So, there it is.  I will try and update you, as I make shit happen.  Wish me luck! 

Rosie N. Grey
The N stands for "new summer adventures".

Tuesday, June 18, 2013

Later vs Now

For the last couple of days, I have been noticing a big difference between the way that I and my husband think.   It is glaring and now that I have noticed it, I can't NOT notice it.

He is a "later" person.   I am a "now" person.
He will smile.

 When I want to do something, or make a decision, I want to start.  Now.  Right now.  I don't want to waste another second, I want to get my hands dirty, I want to get it done.  If I decide that I want to go somewhere, I want to go today.  If I am going to go out for dinner, then I want to do it that night. 

I know that it isn't always feasible to be a now person.  There are challenges- money, previous plans, other people's schedules, and just the simple logistics of starting and finishing projects.  But I love the rush, the excitement that I feel when I get an idea or an urge and I am able to act on it right away. 

Geoff is a later person.  As in "someday, but not right now".  I will tell him that I want to do something, or go somewhere, and he will agree that it is a good idea.  When I ask him to pack it up and get ready to go,  he usually gets that confused look on his face, as he begins to understand that yes, I did mean today.  The excuses usually start.  Sometimes, he goes with it. 

It causes conflict in lots of different ways.  I will ask him to do something.  I mean now.  He does it later.  I get pissed.  He is confused (seeing a trend here?  Geoff doesn't put as much though into these things as I do.) 

So, how do I reconcile this?  How do I make this work?  We will be married for 15 years this year.  You would think that I had figured this out by now.  I am trying to be a bit more flexible in my expectations.  But I end up doing a lot of stuff myself.  I will ask him to make the kids breakfast.  When 20 minutes has passed and he still hasn't done it, I do it myself.  To tell the truth, if he doesn't jump in the first minute or so, I usually do it myself.  Maybe that makes it easier for him to continue to a "later" person.   Usually it makes it easier for me to continue to be a "now" person.  

I am trying to turn my kids into now people too.  Not only do I want them to jump and do what I want them to do, the minute I ask them to do it :), but I want them to live with this kind of excitement.  I want them to feel what it's like to have the flash of brilliance, and that flutter in your belly.  I want them to have the drive to start- not just start but finish! 

There is something I am struggling with.  Their "nows".  The "let's go to the park" and "let's paint!" and "let's play hopscotch".  When their "nows" conflict with mine.   I find myself saying no, not now, later.  I want them to be nows.  I am forcing them to be laters.   That makes me feel like a bad mom.  I need to find a way to fix this.  Now.  Not later.

Rosie N. Grey
The N stands for "now".

Friday, June 14, 2013

Soundtrack to Surgery, Success and Second Chances

Just in case you were wondering...here is the soundtrack that you all built for us.

Thank you!

- Horrorpops- Undefeated (posted by Tickie)
- Lynrd Skynrd- Gimme 3 Steps (posted by Lynn)
- Van Morrison- Into the Mystic (posted by Lynn)
- Anne Murray- Snowbird (posted by Teresa)
- One Republic- Good Life (posted by Christina)
- Monster Mash (posted by Joni)
- Happy Happy Joy Joy (posted by Barb F)
- Jeff Buckley- Hallelujah (posted by Teresa)
- Survivor- Eye of the Tiger (posted by Holly)
- Flogging Molly- Saints and Sinners (posted by John)
- Move It from Madagascar (posted by my mom, Donna)
- Phil Collins- You'll be in my Heart (posted by Aunt Shelia)
- Alexisonfire- Boiled Frogs (posted by John)
- Herman's Hermits- I'm Henry the 8th (posted by Tracey)
- Macklemore-Thrift Shop (posted by Tracey)
- Journey- Don't Stop Believing (posted by Val)
- Brand New Pair of Roller Skates (posted by Tracey)
- Puscifer- Humbling River (posted by John)
- Bob Marley- Three Little Birds (posted by Teresa)
- Adam Warock- I will do Science to it (posted by Joel)
- Macklemore- Can't Hold Us (posted by Joel)
- Just Keep Swimming from Finding Nemo (posted by Carrie)
- Florence and The Machine- Dog Days (posted by Michelle)
- Carl Douglas- Kung Fu Fighting (posted by Tickie)
- U2- Beautiful Day (posted by Deb)
- Bruce Springsteen- Born to Run (posted by Deb)
- This is Halloween from Nightmare before Christmas (posted by Barb F)
- Classified- Inner Ninja (posted by Val)
- See my Vest from the Simpsons (posted by Bill)
- Kelly Clarkson- Stronger (posted by Bill)
- Barbara Streisand- If I Could (posted by Aunt Gay)
- They Might be Giants- Birdhouse in your Soul (posted by Claire)
- Josh Groban- You are Loved (posted by Melinda)
- The Beatles- It's Getting Better all the Time (posted by Aunt Michelle)
- John Lennon- Beautiful Boy (posted by Aunt Michelle)
- Kanye- Stronger (posted by Holly)
- Kermit the Frog-Rainbow Connection (posted by Holly)

And dedicated especially to Geoff from Lynn-

If I missed anyone, please let me know.  Facebook is funny, and can be a jerk sometimes.

There were a few that I would add.

- Prince- Let's Go Crazy (heard this one in the car, first thing, after the appointment with his cardiologist that cleared him for the next year.  Oh yeah.)
- Bruce Springsteen- Wrecking Ball (heard this one on the day before his surgery, when I was running around getting stuff ready.  It wrecked me, but it inspired me. It was my anthem.)
- Katy Perry- Firework (I can't listen to this song without thinking about Sebastian.  It was written, just for him.)

Thank you to everyone that put their heart and soul into picking a song for me and Bastian and Geoff.  I am having Geoff burn them to a disk for me, so that my soundtrack can go everywhere with me.

Rosie N. Grey
The N stands for "new soundtracks".

Truth time

ok...I'm back..or at least I am going to try to be. 

I have fallen out of the blogging habit.  Partly because I wanted to, partly because I needed to, and partly because I am lazy.

But I have missed it.  So I am going to try harder. 

I am inspired by some other blogs I read.  Every day, there is a new post, even just something little, or pictures or something.  So, I am going to try and set aside time every weekday (weekends are optional!) to blog something.  Anything.  Good luck to me!

As you know from my last post, Sebastian has had and survived (not just survived, excelled at, crushed, succeeded!!) his surgery.  Life is slowly returning to our version of normal. Sure there are some changes.  Nothing we can't handle.

But now, as we get back to normal, I have been forced to take a look at my life, and where I let it get to.  Since we found out that Sebastian was going to need surgery (end of November/beginning of December ish) I have really, REALLY let myself go.  I have been pretty aware of it, I have seen it happening, but I did very little to stop its progress.  At times, I willingly gave into it.  I gorged myself, I stopped exercising.  I ate whenever and whatever I wanted.  I would feel sick, and I simply didn't care. 

At the time, I really didn't associate it with Sebastian, and I am quite sure his situation isn't 100% of the cause of it. But the week after he came home, I got on the scale. Holy shit.  I don't want to type it, but I will.  I had gained back 40 lbs.  40.  Wow.  I had been down 70, and now more than half of it had come back. 

I knew that Sebastian was doing well, and was going to be with us for a long time, so I decided that I should probably stick around too. I got serious that day, and since then, about 4 weeks, I have dropped almost 20lbs.  Thank goodness.  I still have a long way to go, but it would be nice to at least get back to where I was before.

Two weeks ago, I started feeling really sick.  I had swollen glands, couldn't turn my head.  I could literally see the glands in my neck, under the skin.  They stuck out like Frankenstein's bolts.  My body hurt, I had a fever.  I went to the clinic, they gave me antibiotics for strep.  I have had that before- it hurts like hell for about 2 days, and then I start to get better.  I know that I have 2 days of not being able to swallow, of crying when I have to force down the pills.

But by day 6, when I am still feeling that way, and it's not getting better at all, I know something is wrong.  Back to the doctor I go.  And now I know.  Not strep, mono.  I didn't even get to kiss anyone to get it.

It's a week later and I feel a bit better.  I can eat and drink again, although lots of times, I'm not really hungry.  I am super tired though, and can probably sleep about 15 hours a day.  I take naps as often as I can, and try to go to bed early.  I don't kiss my kids or Geoff, for fear of giving it to them.  My mom basically took care of my kids for a week straight, so that I could sleep and I didn't pass it on.  (She's a rockstar, that mom of mine.)

And I know, I have no one to blame but myself.  Stress and lack of care did this to me.  I stopped looking after myself, a long time ago, and I am paying for it now.  I know I have to change, this is my wake up call.

I attended 2 funeral visitations last week, for different people.  Both were young, too young to be gone.  Another call from the universe, telling me to get my ass in gear.

I am listening to the universe.  I am trying to let in light and life.  To live in the moment.  To make good choices.  To cut out the bad (food, habits, energy, people, attitude...whatever!) and find more of the good.  I am looking for beauty, doing what I love.   

Wish me luck. I will keep you posted.

Rosie N. Grey
The N stands for "now".

Thursday, June 13, 2013

Open your Heart

My apologies.  Sebastian's surgery was over a month ago now, and I am just now getting around to writing about it.

Let me rephrase that.  I am not "getting around" to it.  The emotions with this surgery have been very close to the surface and very raw.  It has taken me the past couple of weeks to loosen that tight grip of terror that existed around my heart and soul.  I had lived with it for so long, I didn't even realize it was still there.  I am just now getting to the point where I am not scanning his face and body for signs of imminent disaster. So, now, I think I can write about it. 

I am not planning on writing a play by play.  Most of my nearest and dearest have heard the nitty gritty details.  But I want to remember some of the emotions and the things that played in my head when all of this was going on.  Bear with me.

In the weeks before his surgery, I spent a lot of my time focussing on positive thinking.  I have realized that my visualization needs to be exactly that, visual.  I picture single images in my head- a Facebook status, a number, a smile, whatever it is that symbolizes what it is that I am wanting/needing.  In Sebastian's case, I was picturing him, with the scar, home in his bed.  I kept picturing good things.  But in the back of my head, I knew I had to prepare myself for other things.  Bad things. I needed to be ready.  I didn't focus on them, I didn't spend any more energy on them then I needed to, but I still spared the thoughts, in an attempt to ready myself in the event that the worst happened. 

The week before his surgery, Holly came over.  Together, we planned my son's funeral.  I am pretty proud, we only cried once. I didn't tell anyone.  I don't know if Holly did, but I doubt it.  I just knew that if...if...if...

If it happened, I wouldn't be able to make those choices.  I wouldn't be in any shape to be strong and smart and to do right by him.  So, I made myself do it before.  I did eventually tell Geoff.  After.  After he was fine and safe and alive.   After it was no longer a big deal. 

I remember going to Sebastian's pre-op.  My mom came with me.  My hope was that if I got overwhelmed, or if the talk was too medical, she could help me figure it out.  I tried to ask all the right questions. I tried to listen and absorb.  I tried to listen to the positive but retain and be calm about the negative.  I blinked when they told me about the bypass machine.  I blinked hard, when I heard that his heart wouldn't beat for 20 minutes.  I laughed at Sebastian's dramatic tendencies.  I tried not to be overwhelmed, I tried to make it fun for Sebastian, and I tried to be calm when all I wanted to do was holler and punch.   We made it through. 

The day of the surgery...wow.  There was so much.  Like I said, I am not walking through it.  I am just remembering the emotions.  The passing thoughts.  The dreams and nightmares.

When we had Sebastian in the bed, and I was scrubbing his chest and tummy with the antiseptic scrub, I remember looking at his chest.  I tried to memorize it.  His perfect white skin.  No marks.  No history of pain.  I wanted to remember it.  I was literally remembering his round little tummy from when he was a baby, smelling that amazing smell.  

With his first surgery, the before was easy.  He and I laughed and giggled, watched TV and played.  This time was harder.  It was early, we were all tired.  I tried to laugh with him, but we were all quiet.  Geoff kept falling asleep.  Sebastian layed quiet and flipflopped in the tiny bed.  When he finally was sedated and fell asleep, I petted him as long as I could.  I held it together for the walk down.  I passed him off to the nurses and surgeons.  I tried to ask questions. 

And I cried.  I was human, finally.  I was his mom.  I wondered if this was the last time I would ever see my baby boy breathe.  And I cried.

I kissed his head, and hugged him.  I looked at him and offered everything in me, if only he could come back to me.

The volunteer that was walking Geoff and I to the waiting room stopped and got us a box of Kleenex.  We needed it.  We kept that box with us for 2 days, before we finally left it behind for someone that needed it more.

The waiting room was an exercise in torture.  The day before, I had a brainstorm.  I believe in soundtracks to our lives.  And I asked everyone to create mine.  People rose to the occasion.  Magnificantly.  My plan was to listen to the music while I waited the 5 hours for the surgery to be done. 

That was my plan, anyway.  I got as far as my friend Barb's Facebook status.  She wrote "Sebastian, you are my sunshine."  Even now, I cry when I think about it.  That day, it was enough that I couldn't go on.  Occassionally, I would log in, and read a few.  I couldn't listen to the songs themselves (and didn't, for about a week.  And even then, I still cried), the titles were bad enough. I appreciated it.  I loved it.  I just couldn't do it. 

I sat in the waiting room and waited.  It was hard.  I kept leaking.  I looked around at the other parents and tried to find someone else like me.  There were some mom's there alone.  I couldn't imagine that.   Every time a doctor came in, my body would tense and I would watch to see where they went to. 

And when it was finally our turn to get our good news, I was sick.  Sick in my stomach, sick in my heart.  So prepared for bad news, but so so so badly wanting to hear good.  And good it was.  When he told us that Sebastian was fine, and the holes were closed, we high fived each other.  No other parent did that.  I smiled, it felt like the first time in days. 

We were told it would be a couple of hours before we could see him.  But when they called my cell 20 minutes later and told me to come up, I was feeling that thing in my stomach again.  I literally had 2 bites of food, and booked it for the ICU. 

Walking into that ICU room...it was the most surreal experience of my life.  I walked in, and saw my baby boy, full of tubes, white as a sheet, a big scar down his chest.  He was beautiful.  The most beautiful thing I had EVER seen in my entire life.

It sounds silly, but a feeling of peace came over me.  Absolute and wonderful peace.  I was happy in my heart and soul.  My tears dried up.  I smiled.   All was right in my world again.

I remember after Sebastian's first heart surgery, I couldn't touch him.  I tried to stroke his hair, but I knew I would lose it, that tenuous grip I had on my control.  This time, I couldn't stop touching him.  I held his hand, strapped to a board and full of needles.  I stroked his hair and his face.  I sang to him, right in front of the nurses.  I kissed his forehead, his fingertips. I couldn't get enough of him. There was energy flowing between us, electric, his life and light reaching out to mine.  I pumped every bit of love and healing that I had in me to him.

The day was long.  I wasn't going anywhere.  I had released my negative thoughts and now started focussing on getting him better.  Right from the get go, I kept the thought of Friday in my mind.  We were going home on Friday.  I knew the likelihood of that happening was small, but I held it close.  I nutured it.  I believed it.  I believed he would be good, and not fuss with his tubes and needles.  I dreamt that he would be perfect and heal wonderfully.  I guess I prayed.  I don't know to who, but I thought it, and believed it.  I willed it all to happen.

That first night, in ICU.  I remember being woken by him and the nurse at 130am.  I took a picture.  You can't see anything but outlines.  But it was 130 am on the ICU floor of SickKids.  It is dark, but there is light everywhere.  It is quiet, in loud, overwhelming ways.  It is lonely, while you are surrounded by people.  There is healing in the dark.  There is kindness and care.  There is a comraderie between you and the nurses, all of you striving and pushing towards the common goal of healing what is hurt.  You sleep when you can, jump when you have to.  You speak in whispers and share silent smiles.  130am is a magic time.

There were times when I had to leave.  They were few and far between, but they were there.  There were times when I had to pass the weight to someone else.  Most times it was Geoff, once or twice the nurses.  I feel like it is always me.  Regardless of the doctors, and nurses and equipment and everything else, it always felt like it was on me.  When his monitors went off, I was the one that jumped up first to fix it.  When he cried, it was my name he said.  When he ate, or drank, when he peed, or walked, I was there. 

But sometimes, just once in a while, I didn't want it to be me.  I wanted someone else to be in charge.  Once I knew it wasn't life or death, I wanted a break. 

Does that make me a bad mother?  I don't think so.  It probably let me stay, helped me be there, more present than ever before. 

I usually just went for a walk, or got a tea.  One time, I walked to the windows in the front of the hospital and watched the traffic out on the street below.  I dreamed about being home, about being a normal family.  I put my head in my hands and focused my thoughts- Friday.  Tubes out.  Healing. Friday.  Tubes out.  Healing.

After 10 minutes, I went back.  Picked up my weights at the door, as it were. And all continued on it's way.

On the last day, when I knew we were going home, they took out Sebastian's tubes.  Geoff seemed to miss a lot of this stuff.  He was lucky.  I was torn- I really wished I had the option of not being there.  I would have hated to have not been there.

I held my boy down, and talked him through it.  I yelled to get his attention.  My face was right in front of him, I filled his vision.  I said to him, over and over "Stay with mommy.  Look at me.  Look in my eyes.  I love you, Sebastian.  I will get you through this.  I swear to God, I will get you through this."  And he looked at me.  He cried and fought and tried to be so brave.  He breathed with me.  He focused on me.  I kissed his tears and he trusted me to take that pain. 

After that, one of the nurses came back in with the treasure box.  Sebastian had done well, so he got a treat. And this nurse, a real hardass, I thought, started talking to me.  She told me that when she first met us, during Sebastian's only real meltdown (when we moved floors from ICU to the Cardiac floor) she knew we were good people.  She told me she went back to the nurses station and told them "Those parents in 8D?  They came to play.  They are good with that boy, and they are going to get him out of here.  They brought their effing "A" game.  So let's work with them, and get this boy home."  She told me that she had just watched me walk my son through an incredibly painful procedure, and it brought tears to her eyes.  She told me I worked miracles with my son.  She said that an autistic 11 year old should be a problem for them, they were prepared for that.  That he was coming home after 2 days was a miracle, and it was thanks to us.  I started crying and told her no, it was Sebastian.  It was all him, we were just his sidekicks.  We followed his lead.  And this hard ass, she walked over and hugged me and cried too.  She said it was all of us.  We were a beautiful family together and together we had made magic happen. 

It was brutal and touching and amazing. 

When we got home, we started learning about our new normal.  We took Sebastian off his Adderall.  His emotions are stronger, but he seems pretty clear.  We have stopped some of his other meds too, which is amazing.  He is gaining weight, almost 3 pounds now (previously it took him a year to gain half a pound).  His scars are healing. 

He and I spent that first week together.  He slept with me, and I continued to carry that weight.  If he woke at night, or scratched or pulled his band aids off, it was me that was there.  Geoff worked, and slept in another room. He helped when he could, but like in the beginning, when we first brought him home, it was me and him.  We watched Facts of Life.  We told some jokes.  We drank milk and had toast.  I told him constantly that I loved him, that he was a miracle.  

So.  He got his tubes out.  He was a good boy and pulled nothing out.  He came home on Friday.  He healed fast and well. 

He is magic.  I am honoured to have helped make magic happen. 

Rosie N. Grey
The N stands for "new, healthy heart"

Happy Birthday

So, as I previously posted, I am now 40.  I have to say, this was one of the best birthday's I have ever had.  Hands down.  I want to make sure I capture everything that happened, so that I can remember.

I used to work a job where I didn't get vacation time.  It was seasonal, so they figured your vacation was when you got laid off over the winter.  And because it was tourism, we were open for every single holiday, except Christmas Day.  I promised myself, when I got a job that actually gave me vacation and floater days that I would a) never work Labour Day again and b) never work on my birthday.

I broke that promise last year and ended up cancelling my day off.  I don't remember why.  So this year, I was extra aware of having it off (does this make me spoiled??)  Plus, super bonus, it was a Friday, so score!  Long weekend!

Thursday night, late.  Geoff gives me my gift from him.  He was working on Friday and knew it would be rushed in the morning to try and get the kids set and ready to go, so he gave it to me when we had a bit of down time. 

Now, Geoff hasn't always done well with gifts.  That is a hard sentence to type, because it makes me sound materialistic and greedy and that is definitely not the case.  Most years I tell him not to get me anything, and I 100% mean it.  I would much rather having him clean the house for me, run me a bubble bath, or make me dinner than just buy something for the sake of buying.  I am a firm believer in the thought and effort behind the gift.  I often try to hand make gifts for people (whether they like it or not!) because it means something more to me.  Anyway...
Sometimes, Geoff can strike out a bit.  He will hate me for reminding him of this, but the one year that stands out is the year that he bought me all the Beverly Hills Cops movies on DVD.  He was absolutely convinced that I had told him I loved them and wanted them all.  Since that is 100% categorically untrue, I find it difficult to believe that I actually said it.  By now, years later, the consensus we have reached is that he likely dreamed it.  Anyway, I opened the gift, and he was so convinced that I would be thrilled with this gift, that he was crestfallen when all I looked was confused.  I humored him for a while, but finally had to break the news that I had only ever seen the first one, and really wasn't that interested in it.  I find it comical (then and now) but it is indicative of some of the years of gifts from Geoff. 

This year however, he knocked it out of the park!!  He has been paying attention.  If you might remember, I blogged previously about finding All Creatures Great and Small on Netflix and how excited I was (it was great, by the way!  Didn't get through all of it yet, but so lovely so far!)  He remembered that I said my only copy of the book was my grandma's old, beat to hell one.  He found me a first edition of the American printing.  Had it shipped in.  It smells like an old library and the pages have that wonderful silky feel that old hard cover books get.  I love it so much, I am afraid to read it.  He also got me tickets to go see one of my favourite authors, Stephen King, speak in July.  I think it is in Connecticut, so we will actually probably make a weekend of it. 

Really, completely stellar gifts- totally thoughtful and considerate and exactly what I would have picked for myself.

In the morning, the kids gave me birthday kisses and hugs galore.  I am pretty sure Sawyer sang.  It was lovely.  They make my heart happy. 

When Sawyer went out the front door to meet the bus, there was a present on the front porch.  She was super excited and brought it in to me.  The card was appropriate for a 4 year old (in fact, Sawyer loves it) with unicorns and rainbows on it.  Inside, written in the hand of a serial killer is an inappropriate note, addressed to "little girl" and signed "your secret admirer".  When I opened the gift, it was this horrifyingly disturbing porcelain clown head.  I laughed right away.  I knew who it had come from.  My friend Barb and Bill know how much I hate clowns.  They randomly send me terrifying and disturbing clown pictures periodically. It was the best way to start my 40th year!

After they went to school, I headed out to my favourite hair lady, Sherry and got my hair did!!  She is awesome.  I walk in, with no idea on what I want, and she just does her stuff.  This time she coloured my hair green, blue and purple, like a peacock.  It's cut short and simple.  I love it.  I started getting compliments pretty much from the time I left her salon.  I got one this morning, even. :)

After that, I went back and got my driver's license and health card renewed.  The bonus was that I was able to do them both in the same spot!!  That might not seem like a big deal, but considering I used to have to got to 2 totally different cities to do it, it was a mighty nice surprise.

Then it was off to pick up Sawyer, for her speech therapy appointment.  My present there?  Why she was doing so well, they discharged her from the therapy early. Huzzah!

We headed home shortly after (after I picked up a scratch ticket that I won $8 on.  Score!) to wait for Sebastian.  I didn't know at the time whether Geoff had planned anything for me that night.  He normally works Friday nights, but I thought he might have made alternate arrangements.  I can admit now, I was a little disappointed when I found out that he hadn't planned anything.  It was just me and the kids.  Oh well, he more than made up for it.

My mom came over that night with my gifts from her and my dad and my brother.  Adam is building me my back fence, as my gift.  But he also got me this wicked hand puppet, that is a red gargoyle/dragon thing.  It is super cool and I have it set up in my living room.  My mom and dad got me a Magic Bullet so that I can have my smoothies.  I have used it a bunch of times, I absolutely love it!!!  They got me more stuff too, like underwear (hey, I really need it!!) and Criminals Minds boxsets. My mother in law swung by too, for a couple of minutes and dropped off my gift (it was moolah, which is always, ALWAYS appreciated!!!)  All in all, it was a great, great day. 

The next morning, I made Geoff take me and the kids out for breakfast at Coras.  He was planning on taking us to do pictures of me and the kids, but it was cold and rainy, so we postponed that for another day.  We brainstormed at breakfast what we should do.  Sawyer wanted a movie, Sebastian wanted to go home and watch TV.  We compromised and went to Limeridge Mall.  I ended up using some of my birthday money to get a new coat and some shirts.  I bought some treats for the kids too.  It was a nice day.  I mentioned to Geoff that I was a little sad that he hadn't planned anything to do with my friends.  He said that he was planning on having his mom watch the kids that night, so that we could go for wings and beers.  He was planning on asking my friends to come, and those that could show up would be welcome.

We ended up with the kids sleeping at his mom's and we headed to Somebuddies.  My friends Michelle and Kevin, Teresa, Nyree and my sister in law Dawn joined us.  We had a blast.  The happenings of that night could fill a blog in and of itself.  Suffice to say, I ended the night at the Wrinkle Ranch (a local bar- not really called that- that caters to an older crowd that just wants to think that it's still young enough to be picking up people in bars) with 2 hickeys (not from Geoff or any other boy, for that matter).  It was ridiculous and exhausting and absolutely wonderful.  So much fun.

On Sunday, my mom did my traditional birthday dinner.  First though, we had to go and get the kids from my mother in laws.  Dawn, who had just returned from her trip to Hawaii, had gifts galore for everyone- including an awesome water bottle with Rosie the Riveter on it, just for me!  I also got beautiful jewelry, made from abalone (probably spelled that wrong) shells, a pinapple corer and slicer and more.  Huzzah!

That night, we went to my mom and dad's for dinner.  Once a year, I get my favourite dinner- turkey crepes with cheese sauce.  I love it, Geoff is meh about it, so I only get it the once.  Totally worth it. 

The following Friday, Geoff had told me that he wanted to take me out for dinner at a bar just down from his store.  As you may know, Geoff works crazy hours, and so do I.  I am home with the kids, he is with other people's children at his shop.  We see each other sparingly, for an hour here or there, before one of us (usually me) falls asleep.  So a date night is a rare thing.  He had a big release going on for a card game he sells at his shop.  This meant there was going to be people there late, until midnight or so, but he said that he had arranged for my parents to take the kids.  I could drive out, we could go to dinner, and then I was going to hang out with him and Joel at the shop.  I was actually really looking forward to it.  I thought about stopping and picking up a 6 pack, and making a fun night out of it. 

What I didn't know is that this was a surprise party for me.  Planned by the darling Teresa (and with the input and co-operation of many others), all of my nearest and dearest friends (with just a few exceptions) were at the bar waiting for me.  I was stunned and completely surprised.  I normally hate surprises, but this one was awesome.  I cried a lot that night...good tears.  I drank too much, laughed too loud and talked too fast.  But it was lovely and amazing. 

I got wonderful gifts- a lotion and bath set that smells like vanilla ice cream from the lovely Shannon, homemade chocolate and peanut butter cupcakes from Tickie (who stalked my Pinterest page for weeks, trying to figure out my favourite flavours!  Good guess, you nailed it!), a beautiful bird bath and feeder from Joel and Carrie and the kids and a gift card for more and more and more books from Shelly and Nicole.   But hands down, the gift that blew me out of the water was the one from all my girlies. 

They made my blog into books.

3 volumes in fact.  Complete with pictures and quotes, and personal touches.  When I first opened the gift, I was completely confused by what I was seeing.  Once I put 2 and 2 together, I started to cry and couldn't even look at them.  As the night moved on, I was able to, little by little, read them and peruse them and see 3 years of my life spelled out in black in white before me.  In the 3rd volume, the inscription is a message from my friends to me.  In it, they call me fierce.  Fierce.  I cried all over again, and still do, whenever I read it. 

When Teresa leaned over later in the night and looked in my eyes and said "Anita, you are a published author....."

I have no words.  I still choke up when I think about it.

So, yeah, it was a good night.  One of the best.

A week or so later, my sister in law, Holly had finally received the package she had ordered from overseas.  She and Eric came over to wish me a happy 40th, with an awesome homemade card, complete with pictures of all my family and me over the years (it now hangs on my fridge!).  Eric had made me a gift and had been chomping at the bit for a while to give it to me.  I was an excited as he was!

What he had made me was totally worth the wait.  He had found a picture that he thought (correctly!) was perfect for me, and had burned it onto wood and coloured it. It is Alice and Dorothy and their pets, enjoying tea beside the yellow brick road.  The colour, the style- all of it reminds me of the old fashioned lithiographs and postcards that my Grandma would have had.  I immediately hung it in my living room and will now find myself, occasionally, just staring at it and daydreaming.  It is a wonderful gift, with so much effort and thought behind it.  :)  Thank you, Eric.

Holly had also stalked my Pinterest page and found a ring I had pinned.  It is bent wire, of Harry Potter's glasses and lightning bolt.  I wore it for some of our hospital visits, and a few other times I have needed a little magic.  It has quickly become one of my favourite pieces. 

So, there you have it.  The perfect 40th birthday week.  Friends, family, love and laughs.  I couldn't have dreamed anything more perfect.

How do I thank everyone for this?  How do I every repay the kindness and effort and love?  How did I find myself here, surrounded by these amazing, giving people?  What did I do, to deserve this goodness?  How do I say thank you?

I don't know.  So I will just say it.  Thank you.  From the bottom of my heart.

Thank you.

Rosie N. Grey
The N stands for "now, I am an adult.  Or 40, at least."