There is that moment every morning, half awake and half asleep, when you decide if you can go back to sleep or you have to get up. Parents of small children know this moment well. They must always get up. For me this is the most dreaded moment of the day, because every day I have to remember that Kiran is dead. You’d think by now I would have internalized this reality. Yet, it’s just as unbelievable to me today as it was one year ago. In fact, I want a new word as unbelievable couldn’t begin to cover it.  Someone once asked me if “unacceptable”  was a good enough word.  Well, it’s definitely unacceptable but it still feels grander than that.  How is it possible that we are alive and our child is not?  It’s just…it’s just…well the word doesn’t exist.

Being the parent of a small child is all consuming.  It takes up every moment of the day.  Every detail of their lives is in your hands.  Kiran had all the regular details in his life; what will he eat, what will he wear, where will we go.  And then all of his medical details, which really were the markers for the schedule of his day.  For some months after Kiran died I could still mark my day with what I should be doing with Kiran at that moment.  Get ready for school/chest PT and nebs, bus picks him up, bus drops him off, nebs, stories and nap, play, dinner, bath, trach cleaning, play with dad, chest PT/nebs, stories and bed.  I could plan what he would wear based on the weather, or what lunch I would pack for him to take to school.  There isn’t a parent on/off switch.  It slowly started to dissipate.  But still, the other day I found myself in the grocery store staring at the soy yogurt that was his favorite thing to eat.

Over the course of the last month I can make out a fuzzy outline of the last month of his life.  Little things, like there was a snow day from school, and big things like my family spent four days with us around Christmas.  Everyday I try to remember what we were doing a year ago.  The last few days are nearly impossible to really look at.  Something akin to looking directly into a strong noon sun.

There are things I can’t believe happened.  I really called Melissa and told her I needed help at the hospital, Kiran was dying.  I really called my family to tell them to start traveling, hoping they would see him alive.  I really did lie on my son’s casket.

I wouldn’t wish this on my worst enemies.  Not that I have enemies, just people I am not too fond of (those of you who really know me understand).  It is a living hell to witness the death of your child and to survive it yourself.  I have spent countless hours, nights awake, asking myself question after question.  What if this…what if that?  Positive that I can find a way to “undo” this.

But, I can’t.