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

Thursday, April 18, 2013

yep. 40.

So, tomorrow I am going to be 40 years old.  Not sure how I feel about that.

It's not that I am depressed about the number.  Sure, it kinda sucks to have to check the box on surveys when your age is listed as " 40 to 65" or "40+" like anything over the age of 40 isn't worth tracking anyway.

But really, I understand that it's just a number.  I have friends that have been in the 40's for several years now (thanks for smoothing the road for me, guys!) and I have friends that won't be here for many more.  I'm still me, same person I was yesterday.

I guess, if anything, it makes me take stock.  Look at the tally sheet, see which side is winning.  Overall, my life is pretty sweet.  Can't complain (but in the immortal words of Joe Walsh, sometimes I still do).  But am I where I thought I would be, when I had been 40 years on this planet?

Nope, no way.  Na-uh.

When I was growing up, I knew I was going to work with animals.  Be a vet.  Oh yeah, then school got in the way, and I realized I hated my biology teacher through high school and the cost of attending 8 years of university became a reality and veterinary school quickly went out the window.  I thought I wanted to be a game warden.  That one came closer.  I went to college, took the classes.  I even got accepted to my 3rd year for Wildlife Law Enforcement.  And then I looked at the employment rates with the MNR (less than 10% of my graduating class got full time jobs in the field).  I weighed that against the cost, and the fact that I had a steady boyfriend (Geoff).  I knew if I wanted to work in the field, I was going to have to move.  BC, NWT, Yukon, even northern Ontario.  Geoff didn't want to go, so it was a go without or stay with.  For a multitude of reasons, I chose to stay. 

Today, I am a financial analyst.  I work inside on a computer for 8 to 10 hours a day. It's good work- I can telecommute, they give me a laptop to work on.  I get to make my own schedule and it's flexible enough that I can make 90% of Sebastian and Sawyer's appointments without having to take time off.  It pays well, and I have built up a shit load of experience in the corporate world.  I have made a little bit of a name for myself, and a good one at that.

But it's not what I had imagined I would be doing when I was 40. 

I have 2 kids.  That pretty much lines up with my vision, although there was a time when I didn't think I would have any kids.  I'm married, but that wasn't necessarily part of my vision either.  I wasn't a girl that dreamed about her wedding and planned it out in minute detail as a girl.  Sure, I had thought about it, and like every little girl, I played bride sometimes, but I also remember talking with friends in high school about how it would be perfectly fine if I spent my life single.  It really wasn't an issue at all for me. 

But, here I am, married, 2 kids, a dog, cats and fish.  A mortgage, a mini-van.  Am I a sell-out?  I think my pretentious 15 year old self might have thought so.  But, she would have come around after a while.

So no, I'm not where I expected to be.  But that's OK.  Where I am isn't half bad. 

I still have my ideals, a lot of them relatively unchanged from when I was young. 
I am still a bit naive.  I tend to believe the things that people tell me.  It backfires sometimes, but sometimes it gives me great stories.  And helps me make great friends.
I am strong.  The independence and strength and grace that I craved and started to build as a teenager is rooted solid in me.  It's a core of steel.  I believe that I can do pretty much anything.  Even when I have my doubts.  Even when I do fail.  I am always surprised that it didn't work out perfectly.
I am kind.  I am loved and I love back.  I have friends.  I have my family, plus new family.  I still dye my hair ridiculous colours.  I have tattoos.  I still fight with my dad. I still drink beer and eat pizza and wings- sometimes for breakfast.

I still goof off when I should be working.  Sometimes, my room is messy.  I forget to make my bed.  I snort when I laugh.  Sometimes, I wait too long and almost pee my pants.  I lose shit, because I didn't put it back where it belonged.  I don't do my homework.  I doodle and daydream when I should be paying attention.

I have nightmares.  I cry in movies.  I want to buy things that I don't need.  Money can burn a hole in my pocket.  I like to swing on the swings and slide on the slides.  I stick out my tongue behind people's backs.  I roll my eyes when I think someone is dumb. 

I want to adopt a million puppies and kittens.  I like to eat my dessert first.  I complain about my chores.  I am lazy.  I like to nap. 

Deep down, I am the same.  Just a little bit different. And I'm 40.

Rosie N. Grey
The N stands for "now- midlife crisis!!"

Tuesday, April 9, 2013


So.  Today's the day.  Kit died 2 years ago.  I don't want this to be a sad post- I have had enough of those lately. 

I don't have much to say that hasn't already been said by his actual kids.  I'm an in-law.  Still a part of the family, but a tiny bit removed.  Enough for some perspective, and a bit of humor and discussion on a day that is still a minefield of emotions for his nearest and dearest.

A lot has happened in the 2 years that he has been gone.  Lots.  Things that he would be proud of, like Sebastian's school, Sawyer starting JK, mostly Geoff opening his comic shop.  Others would have caused him stress- like Geoff opening up his comic shop (just kidding, kinda).  He would have been worried about Sawyer's speech therapy, Sebastian's surgeries, my ridiculous overtime.  I would like to think that we would have seen him often.  But the truth is, we lived 5 minutes from him, and really didn't see him more than once or twice a month.  It has taken his passing to wake us up.  We have family dinners now, every month.  I don't know that it would have happened, if he was still here.  I would like to think that it would have, but I just don't know.  Same as the store- would Geoff be working there now, if Kit hadn't died?  I would like to think so...but sometimes, I wonder.

See, silver linings.  Making something good come from the horrible. That's all you can try to do.

Today, I warned Sawyer to be gentle with Daddy.  I told her that when Daddy came home from work, he might be a little sad, or maybe even angry.  I told her that is wasn't her fault, it was just a hard day for him.  She asked me why.  I was going to tell her, but honestly, didn't feel up to the conversation.  She guess it anyway. 

"Is today the day that Grandpa died?"

I told her yes, and because of that, everyone was thinking about him and that we would feel a little sad.  She said that she had to tell Sebastian, so that he would know too.  She immediately ran off to do that. 

She skipped down the stairs to the "kid" cave that Sebastian has made for himself in the basement.  Kleenex dust coats everything (don't ask.  But really.  It's amazing how much dust a shredded box of Kleenex makes.  Crazy). 

"Sebastian.  Sebastian!!  Guess what today is!!!  It's the day Grandpa died!"

The disturbing part of this conversation is that she is saying this like it is his birthday, and the surprise party is coming next.  Of course, I call her back upstairs to chat.

We sit on the couch and talk.  I explain to her that I LOVE that she is still so excited to talk about Grandpa.  That she remembers him (visits to the hospital mainly, but she says she remembers seeing him at home once.  Remember, she was only 2 when this happened).  I said that she sounded very happy to talk about Grandpa, which would make him very happy too.  But then I told her that she had to remember that this day, 2 years ago, was the last time that Grandma and Daddy and Auntie Dawn and Auntie Holly got to see Grandpa.  And because they don't see him anymore, it makes them sad.

She started to cry then and was very sorry that she had been happy.  So, of course, I felt like a giant heel.

I try to encourage her to talk about it as much as she wants.  I don't want it to be taboo for her.  I do warn her if she is talking a bit too much, and getting obsessive about it, or if it is bothering Geoff too much and she needs to tone it down.  But I don't want her to ever think that she can't talk about it, or him. 

I have never asked my father, not one time, questions about his father.  I have a vague distant memory of someone I think is him.  I know a little bit about how and when he died.  But it's all stuff that I have just gleaned through the years, mainly from random comments from my mother.  It's not that it's taboo, necessarily.  I just understood that death is not something my father handles well.  I knew better than to ask.  So I never did.

I don't want Sawyer to feel that way. 

But now I feel bad.  I bring those feelings of sadness or guilt into it, enough that it made her cry.  It's the last thing I wanted. 

With her being 4, however, she bounces back quickly.  She snuggles for a bit and the storm passes.  And when Geoff does finally get home, he is fine, if a little quiet, and things go smoothly.  I don't think she even mentioned anything to him, and if she did, it was private.  Which is fine too.

So, today, another anniversary.  Not one that anyone wants to celebrate, but that we each mark in our own little way.  I had a coke, like I do on his birthday and today.  Just a little thing.  Sebastian took sips too.

But then, life intervenes.  Sebastian is sick at school, and I pick him up.  The laundry is overflowing, so we do some of that.  There is dinner and the first bath in a week for a little boy.  And it occurs to me, through all of this, that this is our tribute (or mine, at least.)  I keep my family going.  I provide and support. 

When Kit was in the hospital, he talked to me about being strong for the family.  That I was hardworking and dedicated and that he didn't worry because he knew we would be fine.  It meant a great deal, so, today, I did that.  I was strong for my family. 

Miss you Kit.  Hope wherever you are, the golf weather is already there.  I hope the Coke is cold, and there are good friends to sit around and shoot the shit with.  I hope that you get to see the sunshine and pick the berries off the vine.   I hope you have a dog, to sit with, to walk with, to throw a ball for, once in a while.  When you need it, I hope the coffee's hot, and the books are big and thick and good.  I hope the music playing is the blues and that no one there has kids as good as yours, or grandkids as cute.  I hope the people with you love rambling stories and don't mind being interrupted. :)

Mostly, I hope you can see us.  I hope that you know that we are ok.  And I hope that you come to visit, sometime.  When you have some spare time. 

Rosie N. Grey
The N stands for " 'nother year."

Friday, April 5, 2013


Life seems to like to throw me curve balls.  Not nice, easy, lobbing ones, that fall gently to the earth as if floated there by butterfly wings.  No, fast, vicious curve balls, that whistle in the air, and that you can only hit if you swing early and straight across. 

I don't like curve balls. 

I like predictable.  I like knowing what comes next.  Sure, the occasional surprise or pleasant happenstance can be fun.  For example: finding a $20 bill in the pocket of your spring coat- fun!  Getting an adjustment on your gas bill for an additional $200 that you owe- not fun!  One I like.  The other I don't.  Guess which is which.

The curve balls that I get thrown always seem to come at the worst time.  I guess that's what makes them curve balls.  Duh.  But basically, it seems to happen when I am just starting to get comfortable.  When I am starting to hit my stride.  When I just finally am starting to think "I got this.  I'm gonna be OK."

Wham-O!  Ball to the side of the head.  Out cold.

Well, maybe not that bad.  Ball to the solar plexus.  Wind knocked out of me.  Yeah.  That's more like it.

I have had a lot of curve balls thrown at me in my time.  Obviously, the biggest lately was the unhappy results of Sebastian's latest surgery.  Blam.  Not fun.

But there have been others (as I am sure all of you have had them too!  But this is my blog, so right now, it's all about me.  So there.)  Geoff losing jobs.  We used to call him the Company Killer.  He would start working for them, and then they would close up shop.  Gametronics. Dufferin Games.  Maax Spas.  Direct Energy at Accenture.  Not fun.  Not good times.  Every time it happened, I would pick up the pieces and figure out how to move on. 
Sebastian's issues.  His delays.  His physical and health issues.  His schooling.  His therapy.  All of it.  Just as I start to get used to what is our normal as of today, something changes. Now there is a whole new normal to get used to. 
My job.  Just as I seem to get a rhythm at work, something will change.  My role will move or change.  My client or project ends.  My boss leaves.  My co-workers rotate.  For someone that loves routine, these are all hard to take. 

These are just a few.  There are more, some that I am probably not even thinking of right now. 

Amidst all of these curving balls flying at my head are the regular day to day things that we all have to handle as adults: bills, money, jobs, family, friends, kids, groceries, cars, houses, etc, etc. 

And then there are the things we want.  That we want so very, very badly.  For me, it's a long list:
- a clean and well organized home
- updates to the house- bathroom, kitchen, basement, backyard
- get back on track health wise
- do more crafts
- do more fundraising
- plant a garden
- learn to can and preserve
- look into homeschooling
- write more

That list could go on and on as well.

So, I guess now, I'm stuck.  I don't know what to do.  I am so busy dodging these curve balls, that I don't stop to look at where I am heading. I am barreling around the bases as fast as I can, without a clear idea of where I am going to end up.  I am dropping things in my wake, and never really noticing that they are gone, until it's too late.  How do I stop this (this cycle, not the horrible baseball metaphor.  That's nearing an end, anyway.)

I need to get my shit together.  I need to figure stuff out.  I have no idea where to start.  I have no idea what to do.  That's why I'm in this situation- I am overwhelmed with things to do, so instead I do nothing.  Shame on me.

I think I was hoping that writing this out would help.  I was hoping there would be a great revelation in my words that would crack this problem wide open.  Instead, it has come across as jumbled and confused as I am. 

Tomorrow is a new day.  I will embrace it.  I guess.  I really don't have anything else to do.

Rosie N. Grey
The N stands for "nothing to it but to do it".

Thursday, April 4, 2013

The long way home- Part 2

So, Day 2.  Big day.  Surgery Day.

We started the day a bit later than Monday.  Monday we were up at 4am.  Tuesday, we got to sleep until 5.  Yahoo.  Our check in time for the surgery was 9am, but we also knew that the roads would be busier, since the holiday weekend was over.  Geoff's mom, Kathy was coming with us to help out, so we were picking her up as well.

Sebastian was fasting, but was allowed to have a bit of clear fluid up until 7am.  He had a glass of apple juice around 5am, and brushed his teeth.  We dressed in comfy clothes and our WAAD (World Autism Awareness Day) t-shirts.  I packed a change of clothes for me and for Sebastian.  We will still a little torn about staying over.  The hospital had advised that they wouldn't admit him unless there was an issue and I didn't feel right about asking to stay at Ronald McDonald house (if you see some of the parents and kids there, you would understand.  I couldn't in good conscious take a spot away from someone else that needed it way more than I did.)  The hospital has a discount rate with the Delta Chelsea down the road, so if we needed to stay over, we could do so there.  Since we had to be back in TO the following morning for a 930 am echo cardiogram, I didn't relish the thought of coming home, sleeping, and then waking my newly operated on boy at 5am for another long drive.  I was still undecided about it all, so I packed clothes, just in case.

About 10 to 6, we headed out.  Picked up Geoff's mom and on the road.  We were right, there was more traffic than the day before.  Geoff got me a Garmin GPS for Christmas, so we used that a bit to navigate the Toronto streets when Geoff opted to leave the Gardiner Expressway and take the Lakeshore route.  We made it by about 745, still lots of time.  I much, much prefer to be early than late, or even just on time.  Early is always better.

We had a tea and showed Grandma around. Sebastian introduced her to the big Mickey Mouse in the food court, all painted up like a galaxy.  He showed her the animals on the windows in the atrium.  Then he got a hold of Geoff's iPad and started watching his videos.  We had learned our lesson the day before and picked up some headphones for him.  That was a big help.  Eventually we moved upstairs to the CDIU to check in for our surgery.

The Unit was much less busy than the day before.  There were a couple of families waiting for clinic and pre-assessments but that was it.  We checked in with no problem, and Sebastian took over the computer they have set up, just for the kids.  Kathy and I sat and chatted, and sooner than I expected they called us in.  Sebastian and I went together.

The nurse brought us into the recovery room, where Sebastian would come after his surgery.  She gave us some pajamas for him, and took some baseline vital sign readings.  He got dressed and enjoyed laying in his bed.  Olga, our nurse was lovely and brought a DVD player and TV over, along with a big book of movies.  Sebastian picked out Happy Feet and we settled down to watch. 

Now, I had been telling everyone and their brother about Sebastian and how he comes out of an anesthetic.  He has been under about 6 times now, so I have a pretty good understanding of what will happen.  He wakes up swinging.  My wonderfully calm and complacent son becomes very violent and strong.  He usually focuses 100% of his energy on one thing, and one thing only- his IV.  Although he has never actually been able to pull it out when I was with him, he caught Geoff by surprise when he was last under for his first echo at McMaster.  Yanked that sucker right out.  He is super strong and slippery and he holds absolutely nothing back.  He goes full out, non stop until 1 of 2 things happens- he either yanks out whatever it is he doesn't like (and then he moves onto whatever bothers him next) or the drugs wear off.  I always pray for the 2nd one.

Anyway, I had been telling EVERYONE about this.  They needed to know.  I understand that they deal with kids all the time and have probably seen everything, but I didn't want anyone to be caught by surprise. They all seemed to take me seriously and we had some good conversations about stuff that has helped in the past (i.e. take the damn IV out, if you don't absolutely need to have it in) and stuff that hasn't (i.e. trying to reason with or shame him into listening.)  I felt like we were in a good spot.  Sebastian's spirits were high, and I was feeling pretty positive about things to come. 

Sebastian started asking for his pictures and his daddy, so I went out to the waiting room to get both.  They only allowed 2 visitors for each patient, so Kathy had the dubious but completely necessary task of watching our shit.  My purse, Geoff's bag and iPad, my bag with the changes of clothes- all of it got left on her, whenever we got up and ran to see him.  I will be eternally grateful that she took that pressure off my mind completely.  I never worried about where I had left something, I always knew it was with her.

Geoff came in to sit and wait with us.  We had opted out of giving him sedation before hand, since they were willing to let me go in to the OR with him, and help him go to sleep. I knew if they did that, we would be fine without the additional meds.  In the last half hour before his surgery, we met with the 2nd doctor, Dr. Benson- who gave us another run down of what to expect, the OR nurse, who was the one who was going to get me gowned up and ready to help in the OR, and the anesthesiologist.  I forget her name but she was a lovely British lady.  She was so respectful of us and Sebastian.  I usually have no fondness for them- the anesthetists that I have met in the past have all seemed incredibly arrogant and even weird.  She was wonderful.  She told us to make sure we brought his pictures with us, and that she would work around them.  Anything he needed to be calm was OK with her.

Sebastian and I kept holding hands and tickling each other and laughing our little private laughs.  He would smile at me and tell me "Mommy, you are so crazy."  I wanted it to last forever.  I didn't want to take the next step.  But I kept thinking to myself - another 5 hours and this is done.  Your son will be better.  He will be healed.  He will be whole.  It's so fucking worth it.

Geoff was not doing so well.  He leaked, constantly.  He was worried and couldn't help but let it show.  Sebastian didn't seem to notice and I didn't draw attention to it.  I asked him once if he was keeping it together.  He just nodded yes. 

Sooner than I expected, and right on time, the nurse came to get Sebastian and I.  She handed me a paper outfit and a hair net.  Sebastian laughed when I asked him if I looked like a giant marshmallow.  My hair net was hilarious.  Geoff bent to say good bye and lost it completely at that point.  Strong emotions like that can be confusing to Sebastian, so luckily, he shrugged it off pretty well and he wasn't upset as he and I held hands and walked ourselves down the hall to the OR. 

I kept my voice light and fun as we oohed and ahhed over all the amazing equipment in the OR.  They had a step stool for him to climb up into the bed.  I helped to get him settled and he laid down so very well.  The nurses asked if we could take his shirt off now, or wait for him to go under.  I helped them take it off now, but the crazy kid decided to be a pain.  It was just funny as he claimed to have his arms stuck and to wave back and forth with his head and arms still firmly encased in the surgical shirt.  Eventually I tickled his armpits enough that he dropped his arms and we were able to pull it off.  He laid his head back and they pulled the nicely warmed blanket up over him.  I gave him a few pictures and he held them up to go through them.  I held his hands as the doctor put the mask over his mouth and nose.  They let him keep his glasses on.  The had made the mask smell like strawberry jam, after they asked which one was his favourite.  He looked at me and I looked at him. Neither of us cried, and I smiled so big for him.  The doctor's British accent lulled him to sleep, literally, as she talked of playgrounds and sunshine.  After about 15 seconds or so, she asked him to open his eyes.  I asked him too.  He didn't.  He was asleep. 

It was truly lovely. 

I thanked all the ladies and made a joke about how they must have done this a time or 2 before.  The OR nurse escorted me out, and I made my way to the waiting room, hoping to have Geoff take my picture in my outfit.  I thought Sebastian would get a kick out of seeing Mommy in her marshmallow suit after he woke up.  Geoff was nowhere to be found and Kathy was shocked that I had made it out first.  Considering he had left when Sebastian and I had first made our way down to the OR, he definitely should have seen her first.  I managed to find him in the washroom, getting his shit together.  I went back and took off my outfit and threw it away.  Eventually he joined us, and we made our way down to the food court for lunch.  This was about 10 after 11. 

The doctor had told us that the surgery itself was about 90 minutes.  There would be another 20 minutes or so of them waking him up and having him back in recovery.  Because of my many warnings, they told me they would bring me in as soon as he got back.  My plan was to be back in the waiting room by noon, so that they could easily get a hold of me, even though everyone and their brother had my cell phone number.

Geoff and Kathy and I had a nice lunch.  It was still a bit before the morning rush, so we had no problem getting the food without line ups or waiting for a seat.  I texted everyone to let them know that he was actually on the table now, and that I would update as soon as I could, but didn't expect to hear much before 1230 or so. We stopped for a sweet treat at Starbucks and then made our way back to the waiting room. 

Geoff had brought some comic books and sat and read.  Kathy had brought her Kobo reader, but she very nicely sat with me, as I stared out the window or watched the kid cartoons on the big TV.  She asked if I had brought anything to read.  I had thought about it, but knew that I wouldn't be able to concentrate.  I was right.  I could barely follow an episode of Arthur.  My thoughts were swirling and I tried with all my might to coalesce them into a positive stream of thought, focused solely on getting this kid out of this alive and well.

About 12:45, I mentioned to Kathy that I was taking the "no news is good news" approach.  I had fully expected to be hauled into recovery right at 12:30, when they woke the sleeping giant.  I remember saying to her, laughing, "either he is doing the impossible and sleeping, or he is Godzilla and is flipping tables in the OR right now. "  She and I both laughed.

At 12:50, Dr. Benson came out.  He wasn't smiling.

He took us around the corner.  We had to wait for Geoff, because...I have no idea why.  I wasn't looking at him.  I was looking at this unsmiling doctor.  The doctor that should have been smiling because everything had been textbook and was such a breeze. 

He told us that the operation hadn't gone well.  He said that there were 2 holes in Sebastian's heart.  One was large and one was small.  The large one was larger than they expected.  It was 28 mm.  I think he used the word massive.

They decided to patch the large hole and leave the smaller one.  They put in the patch.  They hadn't even started to attach it.  Things started to go wrong.

Sebastian developed arrhythmia. His heart started to beat irregularly.  He didn't arrest.  But they had to shock him to reestablish a regular heart beat.   Shock him.  The doctor said those words.

Geoff left at this point.  He sat down with his head in his hands.  I stayed and listened to the doctor.

The doctor said they decided that they couldn't leave the patch in his heart.  They removed it and that helped his heart reestablish a regular beating rhythm.  They had been monitoring him and things seemed to be going just fine.

But this also means that the catheterizing is no longer an option.  Sebastian has to have the open heart surgery. Another waiting list.  Another operation.  Another grasp at hope.

The doctor again reassured me that things were fine.  Sebastian was heading to recovery shortly and we would be able to see him.  I remember smiling at the doctor.  Thanking him. I came around the corner, back to the waiting room.

Kathy was sitting beside Geoff, hugging him, but looking at me.  She asked what had happened.  Geoff couldn't seem to speak, so I told her.  I broke, but I told her. I went back down the row of chairs to my seat.  I dug grooves into the palms of my hands with my fingernails as I tried to get a grip.  I had to stop crying, right fucking now.  They wouldn't let a hysterical woman in there to see her son.  So smarten up and just fucking stop.

I couldn't even look at Geoff.  I didn't comfort him or say a word to him, although I probably should have. Geoff's mom came over and sat beside me.  I let her hug me but didn't hug her back.  I know now that I probably should have done that too.  But I was clinging to my control by a single thread.  If I moved, it would break. 

I tried to talk, to make sense.  I don't really know what I said.  I think I talked about how it is always better to know, then to not know.  I think I said that nothing is ever easy with this kid.  He seems to always like to take the long way home.  I said some other things.  We laughed a little.  Slowly, I came back into myself, present and accounted for.

It seemed like forever, but about 5 minutes later, the receptionist answered the phone and told us that we could go in now. I ran.  Literally.  Didn't wait for Geoff.  Didn't say good by to Kathy.  Got my ass moving, and got the fuck in there.

It was dim and he was sleeping.  Completely cocooned in a blanket.  That made me smile.  He loves that.  I knew he would be happy to be wrapped up like that. 

A beautiful nurse was sitting quietly beside him.  She introduced herself and for the life of me, I can't remember her name.  She was my lifeline and I don't know her name.

She was taking his blood pressure readings down.  She explained that for the first hour, the machine would read him every 15 minutes.  After an hour, it would change to every 30 minutes.  She explained that they had gotten him at 1pm, and if all was well, he could go home at 4.  I didn't think anything of it at the time, but it turned out, she had the time wrong.

It was very quiet in recovery.  Geoff sat in the chair next to me.  I tried to touch Sebastian's face and hair, but that was too much.  I stopped.  I wouldn't be able to do this and I was deathly afraid of waking him up.  So I sat.  I stared at the ceiling, the wall, the clock.  I stared at the numbers on machines that kept track of the fact that my son was still alive.  Geoff cried quietly beside me.  We didn't speak or touch or even look at each other.  Everything was frozen and no one wanted to move and break anything.

Sebastian slept on.  For 2 hours, he slept.

Occasionally he would open his eyes.  The first time he did, he looked me right in the eyes.  I was thrilled that the first and last things he say before and after his surgery were my eyes.  He rolled over and went back to sleep.

The nurse eventually explained some of what was on him, and what we were seeing.  She showed us the big pressure bandages on his hips.  She explained that he needed to stay as still as possible for 4 hours after the surgery to make sure there was no bleeding from the sites.  It was OK for him to flip from side to side, but no lifting his legs or trying to sit up.  She told us the IV was still in his hand, but not attached to anything, so there was nothing for him to pull, when he woke up.  It was completely wrapped in gauze, to prevent him from getting a grip.  She said if we could keep it there for an hour, at least, we would be better off.  She told us that they hadn't given him any sedation after the surgery, but they had kept the anaesthetic going right until the end.  Normally they stop it a few moments before they extebate the patient, but that sometimes the removal of the tubes from their nose and throat can jar them awake.  After my many warnings, they decided that would not be good for Sebastian, so they made sure he stayed asleep. 

After about 40 minutes, Geoff got up to get a drink and to update his mom, to let her know Bastian was still sleeping.  He asked if I needed anything, and I didn't.  He left and I was alone with Bastian.

I put my head on the side of his bed on the railing.  I closed my eyes, because they were so very sore and tired.  I tried to pray, but all I could think was "Please God."  I figured, if there was a God, He knew what I was asking for.  I didn't need to be anymore specific.  Now that I was alone, I let the tears come.  I wanted to get them out and gone.  I didn't want to share them with anyone else.  I held my head down and let them drip on my shoes.  Like I suspected once they started, I couldn't stop them.

The nurse came back to tell me that she was going to go grab something quick to eat, but would be back in 10 minutes.  When I looked up and tried to smile, she just knew.  She apologized that things hadn't gone the way we wanted.  She said "I am so sorry that this is happening to you and to your son.  You seem like such nice people".  I tried to talk, to thank her, but nothing came out. She brought me a kleenex and told me that it was OK, that it was alright to cry.  I managed to say that I didn't want to be like this in front of my husband or anyone.  She understood and patted my shoulder.  She drew the curtain a little, to give me some extra privacy. 
Sebastian's blood pressure cuff went off a moment later.  Olga, the nurse from before the surgery came to check and document it.  She looked at my face and gave me a sad smile.  I said I was sorry, but she just shook her head and she too, left me alone.  I slowly gathered my shredded composure back around me, and shook it off.  It was my 10 minutes.  I had used it up.  By the time Geoff came back, I was swollen and tender, but back in control.  At least a little.

Sebastian slept on. 

I was texting back and forth with my mom.  She knew what time the surgery was.  When I wasn't sending her updates right away, bright and sunny ones full of Popsicles for dry mouths and funny "coming out of the drugs" stories, she knew something was wrong.  It wasn't the best thing in the world, but I told her what was going on via text.  It was easier that way.  God help me, I wasn't up for a face to face conversation.  She wouldn't have waited that long anyway. 

Others were texting me too- Zendra from work, Shannon from work, my sister in law Dawn, Teresa and others. I tried to reply as best as I could.  When I wasn't able to, Geoff manned my phone and fired the replies back. Sometimes, I didn't know what to say, so I didn't say anything.

Zendra, as it turned out, was actually at SickKids as well, for an appointment for her son.  She managed to find me, and Geoff sent me out to visit with her for a minute, to give me a chance to stretch my legs.  She was very sweet and gracious and gave me a beautiful card.  It was so heartfelt and wonderful, I was (and still am) incredibly grateful.

Just after I returned from my quick visit with Zendra, and as Geoff had left again to stretch his own legs and use the facilities, Sebastian woke up.  One second he was asleep.  The next second, he was awake.  One more second, he was trying to tear the gauze off of his hand with his teeth, to get at the IV underneath.  Geoff came back in a minute or so, and I asked him to go tell the nurses that Sebastian was awake and agitated.  To their credit, they came on the run- 2 of them.  Apparently, they took my warnings seriously.

For the next 30 or 40 minutes, we waged war with the drugs that were still in Sebastian's system.  My hope had been that he would sleep most of it off and we would have little to no problem with him, once he woke up.  No such luck. 

The nurse was great.  Everything Sebastian went after- if it was at all possible to remove it, she did so.  She did it carefully and correctly, but she did it.  She spoke to him (not us.  That is an important distinction) in clear, confident tones.  And sometimes, he actually listened to her.  She removed his IV.  Then his id bracelet.  Then his O2 monitor.  Then he went after the pressure bandages.  Those couldn't come off.

Eventually, we ended up with me laying across his legs, to keep them down, since he was trying to kick people in the face.  Geoff held his hands and arms down.  I would use my head when I could to try and push his upper body down, when he tried to sit up.  The nurse had told him that the bandages could come off at 4pm.  We were all counting down.  We were at about 3:45, when Olga came up and pulled our nurse aside.  I heard her tell our nurse that she had miscounted.  The bandages couldn't come off until 5pm, not 4.  We had another hour and 15 minutes of this. 

She was so frustrated with herself.  I could tell that she was trying to think of anyway around it.  I knew there was none and that was fine.  From my position across the bed, I blew the sweaty hair out of my face and told her not to worry about it. If I had to stay there for the next hour, I would.  I knew I wouldn't have to, since Sebastian was already starting to come out of it.  They had brought the TV back over to help distract him.  He would become almost trance like, staring at the screen.  Suddenly he would snap out of it and fight to get free.  But the trances were becoming longer and longer.  The fights became less physical and more verbal.  Slowly he began to laugh again.  And talk to us. He pulled his blankets down to see the bandages and didn't try to pull them off.  He wanted me to take pictures of them.  I sat between his legs and gave him deep pressure massage on his knees and ankles while Geoff did joint compressions on his fingers. 

And all was well with the world again. 

The last hour was fine.  He was nice and calm and we were able to watch movies and joke a little bit.  We took some pictures and Grandma finally came in to visit with him too.  I took a bit of a break and spent more that 2 minutes away from him.  It was hard, but I was a big girl and made it through.  Kathy came out to get his pictures and said that the bandages were off and he was dressed to go home.  I headed back in. 

We just had to wait for the doctor to come and sign off on his release.  Because of the fighting, he had had some bleeding from one of the wounds, but the blood in the bandage, when they pulled it off, was dried.  That was a good sign.  The doctor was there quickly and was happy to let us go home.  He apologized again, and was very kind.  I have nothing but the utmost respect for him and the work that he does every day.  He is kind of magical.

I thanked all the nurses as we left, Geoff pushing the kiddo in his wheelchair.  Our main nurse, whose name I can't remember, I wrapped in a hug.  For the 3rd time, I started to cry.  I hugged her as tight as I could and she hugged me back.  It wasn't a hug from someone humoring me, but felt like one survivor comforting another. Her eyes were shiny when she smiled and told me good bye.

We headed out to collect Grandma and our stuff and to start for home.  The silver lining in all of this was that we no longer had to come back to the hospital on Wednesday for the echo, so we were going home for good. 

Sebastian said good bye to all the pictures of the animals in the atrium, particularly the hippo.  We wheeled him to the garage, got him settled in his seat, with a movie and some cookies and crackers and his favourite blue blankie.  I climbed in back with him and we were on our way.

With it being about 530, it was the middle of rush hour and it took a long time to get home.  I had a huge migraine coming on, and felt nauseous most of the way.  Sebastian was hungry and thirsty, so we stopped and got him apple juice and french fries.  He was pleasant all the way home.  I just wanted to sleep.

We made it home by 8.  We dropped off Kathy then made it to our own place.  I brought Sebastian right up to my bed.  We changed him into his PJ's and checked his band aids again.  The nurse had given him a big dose of Tylenol before we left for this discomfort so Geoff ran out to get some more.  We dosed him again around 10pm.

I climbed into bed with him.  We watched some movies, but I was too tired and my head hurt too bad to concentrate.  I checked Facebook, to kill some time, and wait for my own Tylenol to kick in.

The posts on Facebook broke me.  Again. 

There was so much love and support on there for us, I couldn't believe it.  Facebook was all about Sebastian.  It was amazing.  Everyone was commenting and updating their statuses.  I had 8 different messages from people, all asking how things were, offering to help, just telling us that they were thinking of us and that they loved us.  I was overwhelmed and so truly grateful. My texts were still coming in, offering much of the same- love, support, help.

Eventually, though, I had to shut it down.  Sebastian, with his sunken eyes, and tape bruises on his face needed to sleep.  He was smiling and laughing and kissing me but he was exhausted.  So was I.  I asked Geoff to sleep near by.  When he is displaced in our bed, he has a tendency to sleep in the basement.  That is all fine and good, except he can't hear me if I need help with a vomiting child in the night, or if someone has nightmares and wants their daddy.  He spent the night in Sawyer's bed, since she was still with my mom and dad. 

I took a picture of me and Sebastian at the end of our long day.  My eyes were so sore, I couldn't touch them.  My head was pounding.  Sebastian was falling asleep in between his bouts of giggles and saying his body ached.  He was pale as a ghost with dark circles and tape bruises. It was time for bed.

We were home.  Took the long way.  But made it safe and sound, if not entirely whole.


Wednesday, April 3, 2013

The long way home

So here's what happened.  I know you all probably know already, but this is to set the record straight and to help me remember.  It's hard to think that someday this will be a distant fuzzy memory to me, but it will be, so I have this need to get it down.

As I posted previously, Sebastian had been scheduled for an operation to close a defect (hole) in his heart.  It was as non-invasive as a heart surgery can be.  We had appointments scheduled for 3 days at SickKids in Toronto- April 1 was our pre-op and assessment, April 2 was the actual surgery and April 3 was the follow up echo-cardiogram.

On the Saturday before his surgery (which also coincidentally happened to be Easter Weekend) Sebastian was up about 4 in the morning in tears.  He said that his ear hurt and he was really crying hard.  I gave him some kid's Advil and some ear drops we had left over from his last ear infection. I rubbed his ear and tried to get him to go back to sleep.  About 6am, he leaned over and asked me "did you hear that?"  When I asked what it was that he had heard, he told me his ear had popped and that it was bubbling.  I assumed at the time that he had had some sinus pressure (he had a bit of a cold and congestion for the couple of days before) and that his ear had finally popped and released the pressure.  He said he felt better and drifted off to sleep.

What I didn't realize until the next morning was that his ear had really popped.  When he got up in the morning, there was blood on his pillow and in his ear.  I knew then that his infection had perforated the ear drum and was draining.  I called the doctor as soon as they opened.  They got us in right away and the doctor prescribed antibiotics for the next 10 days.

I was glad that we had gotten on it as fast as we did.  But I was very fearful that the heart procedure would be cancelled now.  There was an infection in his body, so I didn't think that they would want to take a chance with operating like that.  However, since it was Easter weekend, I couldn't call and check and find out what they thought.  We knew we had to take the chance and head up for our pre-op, fully expecting to be sent home right away to wait for a new surgery date.

On the Monday, we got up at 4am to get ready.  Neither Geoff or I had ever been to Sick Kids, so we had no idea where it was, how long it would take to get there, and how to get around to where we needed to be once we finally arrived.  So we wanted to have as much time as possible, so that we weren't running around like crazy people, adding a bunch of unwanted stress to an already stressful day.

We were on the road by 5am, to make an 8am appointment.  Since it was Easter Monday, the traffic was a bit lighter than normal and we made it there in plenty of time, by about 630am.  We toured the atrium, got our bearings a bit and settled in to wait.  There is a Starbucks in the lobby, so we grabbed some snacks and finally got some direction on where we should be.  We made our way to the 4th floor, past the organic and gluten free shop, the full Shoppers Drug Mart and other amazing stores (all located conveniently inside the hospital!!)  We checked in with the Cardiac Diagnostic and Interventional Unit (CDIU).  We told her about the antibiotics and the ear infection.  She got a funny look and told us that the surgery would likely be cancelled, but that they would check and make sure.  She recommended that we go down and do our chest xray to get it out of the way, since we were nice and early.  She was very helpful and nice and gave us great directions.

The xrays ended up taking us all of 2 minutes (honestly, it took longer to walk there than to get them done) and we headed back to wait for our consult with the nurse.

Now, all morning, I had been practicing my positive thinking.  I understood that it was highly likely that the surgery was going to be cancelled.  I really didn't want it to be.  Obviously, I didn't want it to proceed if it was unsafe for Sebastian, but we had everything ready to go.  I had booked time off work, Geoff had made arrangements for coverage at the store.  Sebastian's school had been notified and everything was in place.  It is just very frustrating to think that we would be put into the holding pattern once again.  So I had spent the morning picturing my Facebook status as reading "Surgery is a GO!!"  I held that picture in my head, against all odds and believed in it with all my might.

Eventually, we got taken into a consult room by a nurse.  She did the typical- height, weight, O2 levels, blood pressure, etc.  They had told us to bring up all of Sebastian's medications so that they knew exactly what he was on.  Certain ones have to be stopped or modified before the surgery.  We mentioned to her again about the antibiotics and his ear.  She said that she knew and she was waiting to hear from the doctor about his thoughts.  She reiterated that it was likely the surgery would be postponed.  She left the room to go check on the Dr.  A few minutes later, she returned.  The doctor's thoughts were that as long as Sebastian had been on the antibiotics for 48 hours before the surgery and as long as he had no other symptoms, he was OK with doing the surgery.  What??  Are you kidding me? 

I told the nurse that I wanted to hug her, I was so happy.  She just laughed and was as happy as we were.  I still didn't fully believe it, since I knew we still had to talk to the Doctor himself but I figured we were 80% of the way there.  I was texting back and forth with my mom and some of my other friends that had messaged me- like Nyree, and Dawn C and Shannon.  I was thrilled to share the news that we were pretty close to a go ahead!

After talking with the nurse (she gave us a quick low down of the actual procedure and some of the after care instructions) we had to go for our ECG.  This was the only time we got lost in the hospital and it was totally my fault.  We were supposed to go right, then left...I went straight, then left.  My bad but we were able to find our way back pretty quickly, and we got to see more parts of the hospital, which was interesting.  Finally we were back on track to where we should be and made it to the ECG lab (or as we call it for Sebastian- the octopus test.  If you have ever had one, you know why.)

Now, as I mentioned, before the ear infection, Sebastian had been fighting a bit of a cold.  Nothing bad or debilitating, but a stuffy nose and a bit of a cough.  I had given him a couple of detox baths, to try and help.  So far, on Monday, he had been perfectly fine.  No runny nose, no cough at all.  I was thrilled and grateful.  As we were sitting in the waiting room for the ECG, Sebastian drank a juice box.  And started coughing.  And coughing.  And coughing.

If you have been in a Dr office or hospital in the years between SARS and today, you know that people freak out over coughs.  You can be in a store and someone will cough right in your face.  In a hospital though, people look at you like you have just sprayed liquid HIV all over them.  It's scary.

So, now I am all around these medically fragile kids and Sebastian is coughing.  And won't (or can't) stop.  When Sebastian coughs long enough or hard enough, he starts to gag.  If he gags too much, he eventually throws up.  We had just gotten the go ahead sign on the surgery and I can see it all going away because he is choking on a juice box. Damn it!

I told Geoff finally to take Sebastian to the bathroom.  If he was going to throw up, I wanted it to be somewhere private and not on the magazine rack in the waiting room.  They left and I stayed to wait.  A few minutes later the nurse called Sebastian's name.  I told her he had just gone to the washroom and should be back in a few minutes.  She smiled and nodded and left.  I waited.

And waited and waited.

By now, I am thinking that this kid is throwing up all over the bathroom.  He is probably a mess and so is Geoff as he tries to help him out.  My already overactive imagination is in overdrive.  Suddenly, Geoff and Sebastian come walking in.  Turns out the nurse intercepted them on the way from the bathroom and they had just gone in directly to the ECG.  It was all over.  Phew.  My relief over him being OK overshadowed any desire I had to be pissed off at being left to wait and worry.   Geoff did say that Sebastian was a bit upset in the test, asking why the girl was touching him, and loudly instructing her to stop.  "Girl, get off me!  Stop touching me, girl!!"  However he let them do what they needed to and all was well.

We headed back with these results in hand.  The nurse (her name was Laurie, I think) said that there was still a significant wait for the Doctor.  He was doing surgeries as well as working the clinic.  She recommended we head out and have some lunch.  We had an echo cardiogram booked for 2pm, and then hopefully by the time we came back after that, the doctor would be ready to see us.

We went to the cafeteria and checked that out.  The spread is impressive and there is lots of seating.  Even then, because it was about noon, it was very busy and seats were at a premium.  We managed to snag some and settled in for a bit.  The hospital has free WiFi almost everywhere (except our CDIU waiting room, of course.  Sheesh) so Sebastian browsed YouTube and Geoff and I people watched.  About 1:30 we headed up for the echo.

Even though our appointment was at 2pm, they called us in early, about 1:40. I was excited, because it had already been a long day (we had been there for 7 hours already at this point) and the earlier we were done, the earlier we could leave and potentially miss some of the rush hour traffic.

Alas, it was not meant to be.

Because Sebastian had never had an echo at SickKids before (his last couple have been at McMaster and before that at GNGH) they had to do a full work up.  And that takes an hour.  An hour of laying still and letting someone jam you with a wand while smearing goo on your chest.  After you have already sat around and been poked and prodded by other strangers for the last 7 hours.  So, obviously, it did not go well.

His last echo went smashingly at McMaster.  He watched movies and was good as gold.  This time, he fought and cried and yelled and pushed.  Geoff had to come in to help.  We ran the iPad and he watched movies while we held him down.  The ultrasound tech got through it as best she could and had a doctor sign off on the quality of the images before we left, so that we wouldn't have to come back.  I was already dreading the echo we would have to go through on the Wednesday after the surgery.

Finally, our tests were done.  We headed back to our waiting room again- after a short break to take pictures of the awesome animals painted on windows (Sebastian's favourite was the hippo, of course).  We just needed to talk to the doc and then (potentially) we were out of there.

The waiting room was hot- incredibly hot.  And we were tired, so very very tired.  It made for a bad combination.  Geoff actually started snoring at one point.  My head got super heavy on my neck and bobbed a bit.  We made it through- just barely.

When Doctor Otto finally pulled us in, it was a relief.  The end was near. He walked us through the surgery in more detail, showed us what the patches looked like and explained some of the possible complications and issues that could be experienced.  He was thorough and very nice. He checked out all the test results and looked Sebastian over one last time.  I half expected him to freak out when he looked in Sebastian's ear- to yell at us about how he has never seen a worse infection, or some such nonsense.  When he didn't, I figured we were in the clear.  There was a funny moment when he checked Sebastian's groin.  He wanted to look for his pulse and his veins.  Geoff was helping Sebastian take his pants down, while Sebastian was yelling "No, Doctor, don't touch me there!"  I was so proud of him for absorbing some of my never ending lectures about good and bad touching. :)

The doctor explained that there would be 2 incisions, one on either side of his groin.  An ultrasound would go up one vein, which would allow them to see what exactly was there and what was needed to fix it.  The other would be the catheter that would carry the equipment needed to fix the hole.  He explained that they would inflate the hole using a balloon, to determine its true size and shape.  They would then patch it with a metal mesh on either side of the hole, fastened to the walls around the hole.  The patch would be fitted to the maximum size of the hole, to ensure that there wouldn't be an issue if the hole stretched.  In a matter of months, the tissues of his heart would grow over the mesh and it would permanently be a part of his heart.  He explained that in some cases there can be more than one hole.  They make a determination then about what do with the secondary hole- if it is small enough, it can be left.  If it is close to the first one, sometimes the same patch can be used to repair both. If it needs it, they will patch both of them.  It all depends.  He covered the possible side effects- stroke, infection, death.  Blah blah blah. :)  We signed our consent and we were free to go.

We didn't need to be told twice.

We hauled ass out of the building.  By this time it was about 4:30. We ended up taking Lakeshore most of the way home to avoid the problems on the highways.  It really doesn't save much time, but you do keep moving, so it saves lots of frustration.  We had promised Sebastian a stop at the toy store if he was good, so we did that.  Picked up a gift for the little girl we left behind.  We went to my mom and dad's to visit with her for a bit before she had to go to bed.  We stopped at Walmart to print pictures for Sebastian (he loves his pictures and we had taken a whole bunch that he wanted to have) and to get him a pair of comfy track pants to wear home the next day.  Finally we headed home.  Ate a little something (Sebastian had more, since he had to fast the next day- so this was his last meal.).  I finally got to post that Facebook status- exactly as I had envisioned it. Then to bed and sleep the sleep of the mentally exhausted.

Onto Day 2.