I have never done well living inside a state of limbo.  I hate waiting.  Anyone who knows me well knows that I have a plethora of patience when it comes to children…and absolutely zero patience when it comes to pretty much anything else.

Stanford should have received Kiran’s records ten days ago.  I know the surgical team meets and discusses cases on Wednesday mornings.  What I don’t know is if Kiran’s case was discussed last Wednesday or will be discussed in two days.  What I do know is that I simultaneously want and don’t want to have a surgery date.

I am thinking we should know something by the end of this week.

Though I have been through the gamut of emotions over the course of the past 10 1/2 months, I cannot predict what I will feel when we do finally get a surgery date.  I am sure it will not be one emotion.  Will I primarily feel relief?  Fear?  Peace?  I honestly couldn’t guess.

What I know a surgery date will provide me, however, is a purpose.  A sense of control.  Once we have a surgery date, I have a whole to-do list.  There will be a trip to plan, animal care to coordinate, bags to pack.  There will be a possible g-tube surgery to schedule, and a hospitalization to live through with that.  The path will be illuminated before me, whereas right now I am simply…waiting.

I.  Hate.  Waiting.

In the meantime, though, over the course of the past few weeks, I feel like we are finally LIVING with Kiran.  We have a social calendar.  We have two babysitters – the nurse who handles our nights out and a very responsible 18 year old who comes to give me a chance to run errands/make appointments while Arif is home working (a new situation that I LOVE so far).  Kiran and I have gone to Raccoon River Park and walked around the trail a few times, and we just got a nice new stroller that will make this experience even more enjoyable.

It has been good.  We are enjoying him.  Now that cold and flu season is largely over and the weather is nicer, we are able to take him to outdoor events.  He loves it.  We love it.  It is good for our family.

I will be sad when surgery dates and hospitalizations and recovery times start cutting into this life we are creating … but I will be relieved knowing we are starting down the path to make him healthier.



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