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

Thursday, June 13, 2013

Open your Heart

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It was brutal and touching and amazing. 

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

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

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

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

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


  1. Replies
    1. thanks. :) It's a group effort. Thanks for being there.

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  3. Anita, you are an amazing mother and person and I am proud to know you and have you as part of my family.

    Aunt Laurie

    1. *blush* Thank you. It was an amazing experience to go through. I hope I never have to again.