Maybe not so whacked!

It turns out that I might not be as whacked as I thought I was....

March 18th marked the second anniversary since Ailish passed away.  Last year I sent us all packing to Disneyland so that we could be doing something fun and be less cognizant of the date and  the weight it carried.  For the most part it was successful.  The kids who understand where we were timing wise were preoccupied with all we were doing and seeing which was great and because we were in the 'happiest place on earth' my moping had to be at an absolute minimum as it has had to be since Ailish died.

This year is a whole different story.  I really was not expecting to be thrown back into the full throes of grief all over again.  Though not completely the same as when Ailish left the suffocating, nauseating, think you might be having a stroke, my gawd why am I so dizzy feelings returned.  The powerful sensation of your arms physically aching to hold the child and better yet be able to smell her sweet scent
and run your fingers down the silkiness and slight fuzziness that were her legs.  Touching and counting  each of her toes.  Seeing her grin and maybe laugh at the silly songs you sang to her each night.  To hear a coo from another room and know that it came from her and that she was present right where she should be.  It is all back and appears to be hanging around for a bit.  Sure there are days in the last two years where even though you know your kid is dead it has not been an all consuming feeling.  Turns out anniversary dates whether you think it will happen to you or not will slam you in the face.

Time heals all wounds they say.  Either 'they' lie or I'm a slow healer or the death of a child is not included in that which has been quoted ad infinitum.  Well I for one was counting on it.  Now I'm thinking to myself...two years...how the hell did we get two years away from the last time I saw my kid breathing? I also think that even though some days are filled with triggers that take me back to the trauma of her death and the anger at myself and especially those whom I consider to be a huge part of why she died, most days are ok.  There are periods of each day that might be Ailish oriented but not the whole day...usually.  I have learned you can live with only three chambers of your heart functioning.  The day Ailish became Ailish she grabbed onto a piece of my heart and the night she left that piece remained firmly clenched in her tiny tight fist.

The reason I say I am not as whacked out as I thought I was by having such an unexpected response to this second anniversary I happened to have a brief conversation with someone in the field of the dead and dying and she stated that many people have reported the same feelings as I have.  Phew for once I'm not the only loon in the room!  She said she was unsure why but in thinking about it I have a few theories and whether accurate or not they make sense for me.  The end result of this is it is once again time to pull up my bra straps, put the big girl panties on, regroup and get back to where I was or perhaps where I fooled myself into believing where I was.

Close one!

In building a shelving unit together the adorable six year old instead builds letters with the pieces she is 'helping' hold.

"F" she says.  "What word starts with 'f'?"

"You tell me an 'f' word" says the stupid mother accidentally setting herself up for a bomb.

"Fox starts with f" she declares proudly"

And the mother breathes a sigh of relief that innocence reigns supreme in the little one at least for that moment in time.  

The mother then gives pause as to why fox was not the first 'f word' that came to her mind....

I've said a lot of things but....

I have had to say a lot of things along my parenting journey but tonight when I begged to ask "did you not feel that your head was in a pan of meat?" it was, admittedly a first.

Best rerun EVAH!

I know you all wanted to see the same video that I have shown over and over again.  It's the best rerun I have ever seen.  One day I need to get the video tapes of Ailish put on disc so we can view them.  Until then....

Let's revisit

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.

What kind of ball?

At the end of the school day Donovan and his classmates copy from a script of events and activities accomplished into their journals to bring home.  Donovan is generally very orderly and does not like to make mistakes.  This makes the other day's journal entry all that more fun!



I have yet to check with the teacher as to how you play this new game and the boy's language skills are not such that he can tell me however I do know it is a sport I could definitely get into.  I might become an athlete yet!