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

Tuesday, March 26, 2013

My heart. His heart. Same Difference.

So.  Been dreading this one.  But I guess it's time.

Let me begin by telling you a little something about my blogging.  Some people have scolded me for sharing too damn much personal information on this blog.  They can't understand why I would tell (in some cases) complete strangers some of the intimate details of my life and some of my innermost thoughts.  Why in the world would I ever want to do that?

My answer is- Because I can't talk about it.

I have never really been a sharer.  Well, let me correct that- I am not a sober sharer.  When I have had a few pops in me, I have been known to talk a bit more than is sometimes wise. But sometimes not.  Sometimes that bit of alcohol will loosen my tongue and that bit of worry that has been riding shotgun in my head comes spilling out.  Sometimes I regret it.  Lots of times, I don't.

But, when I am sober, I don't really share too much.  Sure, I can shoot the shit with the best of them.  But the real stuff, the big stuff, the LIFE stuff- that stays inside.   It's not healthy.  It makes me worry, and hurt and ache.

So now, I write it.  I can share it.  I can write it all down and pretend that no one will see it but me.  But at least it's out.  It's sometimes an infection that I have sliced into and allowed to drain. Gross, I know.  But a necessary evil, to allow me to continue to live and work and love in the way that I do.  To allow me to sometimes make my baby steps towards living the way that I want to.

A happy side effect is that sometimes I reach someone.  Someone will tell me that what I wrote touched them.  That they are thinking or feeling the same things.  And then, I have suddenly become closer to them.  We are the same, even just a little bit.  We have beat back the dark of my loneliness a tiny bit.   And that is a really good thing.

So, with that lead in- this post will be personal.  If that's not your bag, just go on and do some laundry or the dishes or watch some TV.  If you are insanely interested in the inner workings of my life, then feel free to read on. :)

You may remember an earlier post- round about this time last year (I think.  I am too lazy to look it up, but might try to link to it later.)  We had been advised that Sebastian had a heart murmur.  A couple of crazy echo cardiograms later, we find out that the murmur is due to a prolapsed mitral valve.  Not great, but not life threatening.  All is well. I guess.

Then we found out that it was more.  There was a hole.  His heart is broken.  So was mine.  But we were still OK.

Since then, we have found out more.

Sebastian and I went for a followup echo cardiogram in December.  The last one that was completed at McMaster was done when Sebastian was sedated.  The pediatric cardiologist really wanted to try and get an accurate read of Sebastian's heart.  He wanted to do an echo of him- not sedated, but resting and calm.  An impossible mission I thought.  I laid out some of the things that I thought we would need to make it happen.  He had to be distracted (a TV in the room would work).  He had to have his head slightly elevated (he hates to lay flat for doctors and freaks out when they try to make him.)  He would need breaks about every 10 minutes. I would need to be in the room with him.  If we could do all that, I was pretty sure I could get the doctor what he needed. 
McMaster, being McMaster, made it happen.  The echo went super smooth (apart from me smashing out the back window of my van in the parking garage just before the appointment.  His heart rate might have been resting, but my blood pressure was through the roof.)
After the echo, I met with the cardiologist.  He told me what I absolutely did not want to hear.  Sebastian's hole was significant.  It was causing enlargements in 2 of the chambers. 

He needs heart surgery.

I have read about people that hear bad news and their world suddenly channels down to a single sound.  They can't focus.   Everything becomes blurry and unreal and quiet.  I have read it.  Now I have experienced it.

I know I was nodding.  I was looking the doctor in the eye.  We talked about the options, about the risks, and the hows and the wheres and the whys.  I remembered most of it, incredibly. 

But mostly, my mind was sobbing and wailing.  I was banging my fists on the walls in my head, and screaming that it wasn't fucking fair.  He's been through enough.  I've been through enough.  This isn't fair. Shut up, you stupid asshole.  Stop saying those words.   You are a liar and you need to shut up.

Slowly, my mental temper tantrum slowed.  A calmer, more grown up voice took over.  Listen.  Stop and listen.

So I did.  

What the doctor told me was that we basically had 2 options.  If the walls of his heart were strong enough and thick enough, the hole could be patched by a shunt.  It could be inserted into his heart via a catheter that would travel up from the big vein in his leg.  It is, in heart surgery terms, fairly minor, and could theoretically be day surgery, barring any complications.   The 2nd option was open heart surgery. They would go in and physically repair the hole. Again, in heart surgery terms, it was considered a small surgery.

Yeah, small surgery- my ass.

The decision was not mine to make.  Sebastian's case had to be brought before a team of surgeons from Sick Kids in Toronto, where they would do the actual surgery.  They would review the case, and the results of all of his echos and EKGs and everything.  They would be the ones to make the decision that would fix his broken heart.

I wasn't going to find out until the end of January.  And only if they could get his case heard in the next review. So it was a whole lot of "wait and see".

After a few more questions and alot of support from the ladies and gentlemen at McMaster, Sebastian and I left to come home.  Remember what I had done in the parking lot earlier?  Right- no back window.  Winter time.  Hour long drive back home.  So much fun.  Sheesh.

Sebastian and I left the parking garage.  We drove down the road a bit, and I eventually pulled into a parking lot.  I had texted Geoff to let him know about the window, and to ask him to call the insurance company and to get an appointment with the window people.  He had been texting me back like crazy, but I couldn't answer in the hospital. I finally had a chance to call him back.

I called and he gave me the updates on the window.  All was good, I just had to get home. Then he asked about the results.  I am sad to say that I didn't hold it together.  I didn't cry in front of the doctor.  Everything that I had held in there, came out now.  It wasn't fair to Geoff- never mind the fact that he probably only understood about 1 out of every 3 or 4 words- but it was bound to happen.

Sebastian telling me not to cry from his spot in the back seat brought me back.  I tried to relax and to think of other things.  I have held it together ever since.

It was hard to have the conversations with my parents and with Geoff's family.  When I could, I told them via email.  I didn't want to break again.  I was worried I wouldn't be able to stop, once I started.  I stuck to the facts. That's the safe stuff.

I told the immediate people that I work with.  They have to cover for me, when I am not there.  Again- just the facts.

And that was it.  Didn't tell anyone else.  Didn't want to talk about it, think about it or deal with it.

At the end of January, we got the call we had been waiting for.  Sick Kids had determined that Sebastian could go the route of the catheter and shunt.  Thank God.  As much as I didn't talk about it, I lived with daily (and nightly) visions of my son's narrow and thin chest, being cracked open.  I thought about a man that I have never met very literally holding my son's heart in his hands.  I thought about the blood that keeps him alive pumping past fingers that are trying to help.  God help me, I thought about him dying.

The fact that it wasn't going to happen that way was a huge relief.  Huge. For a while, anyway.

About a month ago, we got the date. April 2nd. I started making plans.  The practical stuff, that needs to be taken care of- who will watch Sawyer, the dog and the cats.  Letting his school know that he will be out for a while.  Booking the time off work.  Getting Geoff out of the store to help.  Where will he sleep, what will he wear, etc, etc, etc.

So.  Now.  It's 6 days away.  And I am so scared.

I told my friends yesterday.  They were lovely, as always. I expected nothing less. :)

I keep thinking about it.  I very purposefully have NOT googled it.  I don't want to see the surgery.  I don't want to read worse case scenarios. My imagination is working on overtime as it is.  I don't need the reality of what it will look like to make it that much more vivid.

There are things that I want to do before hand.  Some are good- time with Sebastian, a special dinner. Maybe a movie. Some are not.  I won't even talk about them here, but I think they are necessary.

One of the biggest ones was writing this down.  Documenting it.  For you, my friends and family and followers.  For me.  For him.  I need to remember where I was.  For better or for worse, I need to know.  I need to remember. Someday, this will all be past.  There will be a new crisis.  And this might be the strength that I need to get through that one. 

So, there we are.  That's what I have been living with for the past 4 months. I would ask you for every good thought and feeling that you can spare- throw it my way.  I will take it, I'm not too proud.

And for those of you that think I share too much...I warned you.  Should have stopped reading 5 minutes ago.  It's your own damn fault.

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

Saturday, March 16, 2013


Right now, I am thankful. 

It is 12:09 as I start to write this on Saturday morning.  I will go to sleep soon.  I am tired in my mind, but not my body.  Today wasn't a movement day. So much the worse.

It is cold. Outside, it's March and it's cold.   I feel the cold coming off the fur of the dog.

So, I am thankful.  Why? 

- I have a little girl asleep in her bed tonight.  She is so in love with her brother, she is sleeping in his pj shirt.
- I have a not so little boy asleep in his bed.  He pushed his little sister down today.  When I yelled and told him it was not right for him to put his hands on her like that, he wore his sad face.  When I sent him to bed early, he agreed and went without an arguement.  He was devestated that he had hurt her.
- My little girl asked to wash my hair for me tonight.  She did a great job mothering me.
- My boy used his quiet sleepy voice to tell me about his day.  He told me about his trip to the Sugar Bush.  He glowed when he talked about the hay ride with the horses.
- My little girl heals me.  I have a scratch on my leg.  She didn't want to kiss it better, because it looked "gross".  When I kissed her kitten scratch on her hand, she changed her mind.  She kissed my leg and kissed my face.
- My boy didn't want to wear snow pants today.  In his words, he already had pants on- don't need new pants.  Love that.  He couldn't climb into his seat in the van because his pants were "too big".
- My girl spent the day with a spot of chocolate on her nose.
- My boy has kleenex dust in his hair, lips and on his nose.
- My girl changed her socks 4 times today...the last pair was a Christmas pair with Santa's face all over it.
- My boy's pants were falling down most of the day.  He would give me his half laugh every time I would tell him to cover his butt.

I need nothing but them to make me thankful. There is more, in my life to be thankful for.  But they make it easy.  Even when it's not.  Even when it's impossible.

Rosie N. Grey
The N stands for "new adventures every day."

Monday, March 4, 2013


Today was supposed to be Sebastian's first horseback riding lesson.

Through his school, the Little Brick Schoolhouse, he and the other kids were going out to a riding stable once a month to work with the horses and to ride.  He started in August, when they had just a one-time outing.  It was $25 and I thought "what the hell?"  I had wanted to put him in therapy riding for a long time, but with his anxieties and fears, I didn't know if I would ever get him near a horse, let alone on it.  But for $25, I was willing to try.

That first trip, it took 45 minutes, but they finally got him on for 5 minutes.  And best part was- he liked it.  He wasn't traumitized at all.  He had fun and wanted to go back again. 

After a couple of months, he was doing about 15 or 20 minutes at a time, being led in the ring.  He was also helping with the saddling and brushing down afterwards. 

For Christmas, because Sebastian is so incredibly difficult to buy for, I had advised the family to try and get him experiences, rather than things.  And my first suggestion was riding lessons.  They wholeheartedly agreed, and that's what my mom, Geoff's mom and Geoff's sister did. 

I wasn't too keen on trying to do lessons in the heart of winter, so I held off on calling for a couple of months after Christmas.  When I finally got a hold of the guy, he suggested today as a good day to start. 

Yesterday, we picked up a helmet for him (he has to have one, since he is under 18) and have been prepping him all week.  My mom and dad got him from school, then came to pick up Sawyer and I and off we went.

Unfortunately, it was too cold to ride today, according to the experts, but they didn't have my contact information in order to call me and cancel.  So we made the trip with no prize at the end.  However, the one boy, Jake, a co-op student that works there, was super sweet and introduced us to lots of the horses, including a 2 month old baby horse.   Her/His name is Heart, because she has a white heart shaped mark on her forehead.  My dad got to pet him/her, which I guess is pretty rare, since she is still a little wary of strangers.  I got to meet a big fella, who decided that he and I were going to be good friends.  He pushed that big ole head of his right through the fence and into my stomach.  I had no choice but to hug and pet him.  Love him already.  Even my mom, who isn't a big fan of horses since my brother was kicked by one as a little boy at a carnival, put aside her nervousness and stroked a few noses.  Sawyer was extremely scared of them in the beginning, but by the time we left, she had patted Thunder's nose and was running between the white horse that would nod yes and the pony that was working in the riding ring.  She was pretty much yelling at the top of her lungs and had no grasp of manners, which is a good indicator that she was crazy excited.

It was good to be in a barn , surrounded by nice people that wanted to be helpful, both to us and the animals.  It was nice to smell the smells, and walk with my kids to pet and greet all of them.  I can't wait to go back.

On the ride home, I was talking to Sawyer.  I told her that I thought there wasn't much on Earth that was softer than a horse's nose.  That smooth, velvet part was pretty much the best thing in the world to pet.  She looked and me and said:

"I wish you had fur.  I would pet you, you would be nice to pet".

And so ends our time at the farm, for today.

Rosie N. Grey
The N stands for "next time, we go ridin'!"

Friday, March 1, 2013


So, after the drama of yesterday and just the overall general hecticness of the week and my pending busyness of next week and such, I was really hoping for a good, quiet day today.

I got it.  Kinda.

First of all, everyone went to school.  That right there is a win.  With the cold and flu season being what it has been this winter, this is nothing to take for granted.  Pretty much at least one day a week for the last month or so, someone has been home- either for a cold, or flu, or a snow day, or an early release, or a PA day, or whatever!  I enjoy my time from 9am until 315pm when there is no one but me and the dog and the cats roaming the house.

Second, my furnace worked.  We had to put in a new furnace this year (and yes, I caved and got a central A/C too.  Two houses and 15 years of marriage and this is the first central a/c we have had.  I have pretty much guaranteed us the coldest summer on record.  Sorry 'bout that.)  Today was chilly and I turned up the thermostat a couple of degrees (from 69 to 71).  It was cold enough in here, before we got the new furnace at the beginning of December, that I have a true appreciation for that simple noise of a newly turned on furnace.  Bliss.

Third, I was mystery reader for Sawyer's school and it was a true surprise for her.  I had to give them 5 hints on who I was.  They are supposed to read the hints through the day and try to guess who it is.  Unfortunately, the teachers forgot I was coming.  Thank goodness I showed up about 10 minutes early.  That let them write out the hints, run through them with the class and get them all settled down and ready to listen.  I was supposed to go in, and say something.  They all have their heads down and eyes closed and are supposed to guess who I am from my voice (of course, only Sawyer would know.)  But the monkey was peeking as I walked in, so she knew right away.  That's ok, she said she had guessed it from the hints anyway, which was, after all the point.
My hints.
I brought 2 stories- "The Paperbag Princess" and "If you give a moose a muffin".  They had recently read The Paperbag Princess, so I read the Muffin book.  I did a good job, if I do say so myself!  The kids got to ask me questions before and after.  My, they do love their questions..

"What's your favourite colour?"
"What's your favourite food?"
"What's your phone number?"
"What colour is your house?" (when I said brown and white and black, he told me those were boring colours.  I agreed.)
"What is your favourite drink?"
"What is your favourite animal?"
"How old are you?" (I did tell them I had a big birthday coming up.  I asked Sawyer to tell them how old I was going to be and she said 14.  I said I would take it.  The rest of the guesses ranged from 18 to 100.  Forty seemed anticlimactic after that, although I was genuinely touched by the teacher's surprise, since she guessed 30.  Yeah me.)

The class introduced me to Pete the Cat and I got to hold the book, while we listened to the CD.  Then we did Tribbles.  I picked Sawyer to go first and she was Orange (very happy) because I was there.  She passed it to me, and I was orange too.  Everyone else got to go.  It was pretty funny.  I would definitely do it again.

Fourthly, I found "All Creatures Great and Small" on Netflix.  I am really excited about that.  When my Grandma died, I found her old beat up copy of the book.  My mom told me it was one of her favourite. I had never read it, but I ended up loving it too.  The cover has fallen off and it is beat to shit.  I keep thinking that I would like to get a new copy, but I would like a special one- like a special or early edition or something.  One of those bucket list type things, I guess.  Anyway, I am excited to have found the show, and can't wait to start watching it.

Lastly, I got my first edition of my new subscription in.  I have flipped through it, but I can't wait to read it cover to cover.  It is creating a longing in me.  Chickens and gardens and homeschooling, oh my.  I keep telling myself to have patience.  All things in due time.

Oh, I forgot.  The kids are having a sleep over in Sebastian's bed.  So far so good.  Last time, it only lasted 20 minutes.  This time, it's been almost an hour.  I hope they have fun.

So, good day.  Still drama, still stress.  Still all the silly things that interfere.  But over and above all of that stuff, good stuff.

Orange Tribble, for sure.

Rosie N. Grey
The N stands for "newest superstar of Mrs. Wilshire's JK class".