An illustration

March 15, 2011

Family routine was pretty much the same as any other day.  Kids, including Ailish out of bed, cleaned up, fed, coiffed, kissed and sent on their merry ways to school.

I spent the day cleaning and cooking and ensuring the kids had enough outfits to get them through the following days that I would be with Ailish at hospital.  Notes of schedules and medications were put up for easing viewing.  Medications were measured out and labelled.

The family returned from their days of higher learning with Ailish coming home from her last day of school before surgery holding a big bear wearing a red school shirt with well wishes from staff and students written on it.
Supper was quick as the evening routine would be different.  Ailish needed a shower and with her below waist length curly hair it would take some time.
After Ailish was showered Malia wanted a bath so as I supervised her playing in the tub in the master ensuite I did Ailish's hair.  She cried as she sometimes did when getting freshly washed hair brushed.
I said "don't worry Ailish this is the last time you will ever have to have your hair done".....  As I realized what I had said I panicked back tracking saying "I mean for the next few days!  Just for the next few days!"

(I had been fearing from the time we had a surgical date until the time was at hand that I was sealing Ailish's fate, that she would not survive.  In all actuality it was something I feared from the time it looked like surgery would be necessary.  Always I tried to brush my fears off as being the normal worries a parent feels when agreeing to any surgery for their child.  Ailish was becoming increasingly difficult to position and was feeling a lot more discomfort in any position.  Her pain was not such that she needed to be medicated for but just enough that she had more periods of unhappiness which was not a normal state for her.  I reasoned with myself that potentially this was the window of opportunity in which to straighten her spine.  She had always been very healthy, fought off every virus that entered the house and would at most have the sniffles for a day or too.  Potentially as her spine continued to curve she could run into issues with lung capacity leading her to increased risk of pneumonias.  Pneumonia in an immobile child can be deadly.  All preoperative testing came back for the most part good and that there were no red flags that would indicate that we should not proceed with the correction. One doctor even said "there is no benefit in waiting".  I agreed.

Everyone was settled to bed at their regular times and I continued in my preparations to make the transfer over to my friend who was going to care for the others a smooth one.  I needed to make lunches for the next day, organize backpacks, shoes and coats and place labels on them so the right belongings went with the right child.

I packed a bag for myself and Ailish for our extended stay courtesy of the health care system.  I had had  special hospital gowns made for Ailish as she was dressed to the nines most days why should these coming days be any different.  She had her new blanket purchased just for the occasion, purple though as there were no pink.  I bought it, over paid for it but was not completely happy with it as it was not pink.  She had her fuzzy socks to keep her feet with notoriously poor circulation as warm as they could be.

As I laid Ailish's clothes out for our very early morning start and went to ready myself to bed the little man woke up coughing, feverish and very unhappy.  I couldn't believe this was happening!  I knew one of two things had happened that had the boy needing to be continually suctioned and that was he had picked up a virus or more likely he had aspirated.  Even with a fundoplication he can still do that.  He is talented, my son.  I was up the entire night with H, suctioning, medicating, comforting and trying every position to attempt to alieve his distress.  I knew he would need the doctor the following day which had me wondering how I was going to make that happen.

You might be wondering what this chronicling of events might be in aid of.  Two things really.  Firstly tonight is both Friday which to me will always be Doomsday and it is March 15, surgery eve.  It was a Friday that my world crumbled and a piece of my heart would no longer beat.  Secondly I write this to illustrate to anyone who should read this that when a bereaved person says to you "it's like it was yesterday" believe them.  On Monday, March 18 it will be two years since Ailish died.  Two years but I remember the events like it was only yesterday.  Some of the details are a bit fuzzy such as I couldn't tell you what we had for supper two years ago tonight but the majority pertaining to what I was thinking, feeling and doing regarding Ailish is right there for recall or to be triggered by any unexpected event.

No question that she needed to be straightened

Fuzzy but for some reason this picture grabs me everytime I see it

Two years since I signed my child's death warrant.  I joked that I was giving them (doctors) a healthy albeit crooked child and I wanted a healthy straighter child back.  It was always there, my fear.  Every doctor I spoke to in the years of preparation for surgery I mentioned how this was my worry.  Of course there are no guarantees in life for anything or anyone and with Ailish's underlying neurological condition everything could be a crapshoot.  There was nothing glaring though that would indicate that she wouldn't sail through like others before her.  Far more compromised kids had lived and thrived post operatively and went home to their families.  Lucky ducks!

Yup....I remember like it was yesterday.