"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".  


  1. I hope you find some comfort knowing that he has his very own special angel looking out for him and the rest of your family. Hang in there honey, everyone will be praying for all of you and especially Sebastian.

    Aunt Laurie

    1. Thanks Aunt Laurie...don't think it hasn't occurred to me. If we can have anyone pulling for us, I'm glad it's stubborn old Kit. :)

  2. Anita...my thoughts and prayers are with you and Geoff and Sebastian and Sawyer

  3. That's some tough stuff to deal with. Thank you for finding the strength to carry the burden, and to share it with us.

    Lighting a candle for you and your family. I will be sure to light one the day of the surgery, as well.

    1. Thank you Sunfire. I am humbled by the support, and I am so grateful for the good thoughts and wishes. :)