Tuesday, April 9, 2013


"After silence, that which comes nearest to expressing the inexpressible is music."
--Aldous Huxley

It has been quite the journey to get to this point. I have known since my twins were about 30 weeks gestation that Wyatt was going to have open heart surgery.  After all the appointments, after all the back and forth and the changing of dates, he will finally have his heart repaired tomorrow.  Our final preparations will happen tonight.  We will travel to the city in the early hours of the morning, our nerves taught, fraying... and hand our son's life over to the surgical team.

We've been in watchful waiting mode since the pre-op appointment.  Is that a sniffle?  A rash?  Is his stool looser than normal?   Doesn't he seem a little warm to you?  Any sign of infection, any slightly off colour secretion will cancel this surgery.  It is the thinnest suggestion of Spring here in Canada; this week it stopped snowing and began raining. As a result, all the viruses are still running strong.  We've stepped up the hand washing, the hibernation.  We've limited shopping trips and excursions and become completely paranoid about his overall "exposure".  For those that know me, this is totally out of character.  I believe in a healthy attitude towards germs, that challenging one's immune system is necessary. Now, I have to be very liberal with the Clorox wipes and I hate it.

There has been a lot of preparation to get to this day.  If, for some reason, his surgery is cancelled and not rescheduled within a three or four day window, it will be too late to reclaim my vacation time.  We would have to reschedule for later in the summer.  There are other, little piddling details too that add up and cause anxiety. After much soul searching, debate and general carry on, I've decided to find formal accommodations for the first three nights of Wyatt's hospital stay.  There is a part of me that feels a certain degree of guilt over this;  my Mama-ness feels I should be there, holding vigil at his bedside 24/7.  In reality, his first three days will be spent in the CCU.  He will be the most sedated and have the most amount of nursing care.  My bed would be a hard chair or a lounge shared with other parents.  I'm a little far gone past my university days, so crashing in a common room is not really going to happen.  My accommodations will have a shower and all the amenities which will keep the "thinking" to a minimum and the flexibility to a maximum-- especially if I had to make a 2 am dash to his side or, got back at that time and need a cheeseburger.  The real work starts when he is moved to cardiology when he will be more awake and in need of more distraction.  There is a daybed in the a bathroom in those rooms. I will be more than happy to camp out with him then.

Another part of this decision was, well, me.  I know me.  I will need an escape.  I will need to decrease the stimuli, to chill out and be quiet.  I will either not want to talk to anyone, or will want to talk to EVERYONE constantly, at least the first day.  I will either sleep like a stone or pace the floor.  I need a space to either sob at random or to stare blankly at the TV.  This makes me a crappy house guest for those that have offered.  I was only going to have my Fortress of Solitude for one night, but Sean convinced me to stay for three and reevaluate on the weekend.  I hated to admit it at first, but he was right. 

I've packed and repacked and packed again for urban survival casual.  I've done ALL THE LAUNDRY and shopped for ALL THE THINGS.  I even have a spiffy new "travel" (read smaller than my 18" one) laptop that will be both a connection to the outside world and a source of entertainment for Wyatt and I. Sean and the kids have a fridge and freezer full of food.  I feel that I can disappear for over a week and know that they will be fed and have clean clothes.

There had to be some degree of discussion with the kids as well.  In Zoe's World, "Mama gone!" will be pretty significant.  She's also been waking up at random for the last few weeks screaming "Noooo Wyaaaattttt!  NOOOOOO!" which, I have to admit, has creeped me the hell out.  I explained to her, as best I could the other day, that Mommy and Wyatt were going on an adventure soon.  I don't know what sunk in, but she looked at me levelly for a moment and replied "Okaymama" before wandering in search of something more fun (I think she's figured out how to blow me off).  Quinn required a different approach: a handful of days ago, he approached me asking for details.  He's a clever kid and deserved a proper explanation. I drew him a few diagrams and talked honestly about Wyatt's heart, how the blood is supposed to flow, how the lungs provide oxygen and remove carbon dioxide, how the heart itself works and how Wyatt's is different.  Quinn listened raptly, pointing out a few things here and there himself.  At one point, he must have gotten tired with my terrible drawing ability and went to get one of his books that has an anatomical representation of the heart.  I went through the explanation again, noting that he had absorbed what I had told him the first time around.  We totally geeked out together for about half an hour more and then at my insistence, watched a little TV together.  So far, the only fallout is a general concern for his brother's welfare and a brief serious discussion about the "heart/lung machine" that occurred a few days later at bedtime.  I know many parents probably would have glossed all this over, but I know my son.  He wouldn't have been satisfied with the "kiddie version". He is still concerned, yes.  But, he knows what is involved and seems to have given him a little piece of mind.  

As it turns out, Quinn also has the best teacher ever.  In anticipation for him being a little off about his brother's upcoming surgery, his grade one teacher is filling the classroom with some of his favorite things:  space, marine biology and superheroes to name a few.   She's also asked anyone who wants to wear Quinn's favourite colour to do so, to make things a little more festive.  I burst into tears when I heard this.  Sometimes the best supports come from the most unexpected of places.

I have made it through my last two twelve hour shifts and despite my fervent prayers, the gods of Psychiatry were anything but kind.  Tonight has seen me get home in one piece;  we have
put Wyatt to bed after his pre-surgical scrub bath, will finish packing and try and catch as much sleep as we can before 3 am. My other two are hopefully enjoying their sleep over and I already miss them dearly.

There is a knot of fear in my stomach that I cannot dislodge through reason or recognition.  I know that it is there.  I know why it is there.  Right now, I will pacify it and myself through comfort.  Through distraction.  I have killed many dragons in the days leading up to this point.  I have lost myself in my advocacy work at times and done a lot of soul searching.  There are pivotal moments in everyone's lifetime where your resolve, your stamina is tested.  This is one of those times for us.  I have to embrace it as such and find the music within.  As this new stanza unfolds for us we are mindful of the composition thus far... and those that have joined us in it. We are cautious, yet strain to hear the opening refrain of this next chapter in our lives, in Wyatt's life.  With a little luck it will just be like Wyatt himself:  wondrous and full of life.

The Surgical Suite:
Prelude - Grave - Allegro con brio - Adagio - Allegretto con moto - Finale - Coda


  1. Love, laughter, and goodness.
    I'm here.

  2. I know it's the scariest thing ever. Maybe pick up a flooring book,, it was the best mindful/mindless activity for me during my boy's surgery. It did get some funny looks, but. who cares?
    We'll be thinking of you across the miles. Truly.

    1. Flooring book? That would have helped actually. :)
      Thanks for the kind thoughts

  3. We're thinking of you across the miles. Truly.

  4. Worry and fear for your child is the most alone there is. You and Sean are doing great for your kids in spite of that. Looking forward to welcoming you back and hearing what a champ Wyatt is.

  5. Go Wyatt Go. Sending you all good vibes from Montreal!

  6. Thinking of you darlings at this most petrifying of times. We walked. Walked and walked. And cried and hugged.
    Wyatt will lead the way.

    1. There was a lot of walking. A lot of tears. xox

  7. Thinking of you and Wyatt and all your family.


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