Birthday eve,eve,eve

Ailish's birthday is days away.  This was her birthday last year.  She would be turning twelve.  I should be grateful.  With her diagnosis of hydranencephaly where she was missing all of her cerebral cortex, some of her cerebellum and having a malformed brain stem, according to text books and many children  having gone before her she shouldn't have survived her first year if that.  I am grateful.  I still can't help feeling cheated.  I want more than eleven years.  I want more than her memory.

I think some believe and maybe I did too that in choosing to be Ailish's mother and knowing what her prognosis was that I somehow should have been better prepared, that maybe it shouldn't or wouldn't hurt as much when she left.  I'm here to tell you that was a fool's premise.  When raising a child you know for sure you will outlive you have to develop the ability where the fact is kept in the back of your mind but  far enough back that you don't live your life haunted by it.  By focusing on the child's lack of tomorrows you steal away from their todays.

Ailish was healthy other than the obvious disabilities.  She had but one cold a year that was usually short lived.  She had the occasional seizure in the last couple of years and more in her early years but other than that there were no pneumonias no hospital stays.  She was medication free.

You wouldn't think that a child who demanded so little commanded so much.  Ailish required little from those around her.  She was content with what was provided her.  She laughed, she cooed and cried only when she needed repositioning or believed it her turn to be held.  Though she did not request a lot of attention we all gave it freely.  Everyone wanted to be the one that made Ailish 'talk' to them or laugh.  Each of us wanted to compete for Ailish's affection which was shown through her grin and her giggle.  We all wanted to be her favourite.  Each of us thought we were her favourite ( I really was though...).  Though each child in the family has their own special needs the majority understood if things were not right with Ailish something needed to be done...and now.  There was to be no waiting around for her.  If there was a problem then the others wanted it fixed now!

Though I grieve for Ailish ( a journey that requires its own post!) I know where Ailish is.  I am very clear that Ailish is not coming back.  The majority of her siblings unfortunately are not that 'lucky'.  Developmentally they are unable to comprehend the permanence of Ailish being gone.  She went to the hospital for surgery then she didn't come back.  We had a funeral (what's that?).  Lots of people came over.  There was lots of talking about Ailish but where was Ailish?  Why can't she come back?  We are almost a year out and I am reminded almost daily that a lot of the kids don't get it.  It saddens me.  What must it be like to not know where your beloved sister went.  To see pictures of her all over the house, to hear her name mentioned but not to see her again.  I don't use the word Heaven with them in reference to their sister as to them Heaven is a concrete place that you can come back from that we can go get her from.  We are planning a trip to Disneyland over the anniversary of Ailish's passing.  One of the kids thinks that we will see her when we are in the airplane.  Another thinks we will find Ailish in Disneyland.

There is but no choice to carry on and live our lives to the fullest equal to what was offered Ailish.  Losing her though tragic, a dark spot in the life of our family and life altering cannot take away from the quality of life of everyone remaining.  It serves no one least of all the memory of Ailish.