This season in our lives is about to come to a close.  The hospital where Kiran was born sent us home with all kinds of information about “interstage” – this time period before what we have always known is a necessary surgery.  We have made it this far.  Nine and a half months.  More ER visits than I cared to keep track of – I would say a handful, minimum.  Two hospitalizations, after his initial stay in the hospital from birth, one unplanned, one planned.  One cardiac catheterization, one surgery to place a g-tube.  A million and a half pediatrician appointments, cardiology appointments, gi appointments, orthopedic appointments, home health nurse visits,  vision appointments,  physical therapy sessions, visual therapy sessions, occupational therapy sessions….

We have made it.  As his parents, we have done our job during this interstage period.  We managed to make it nine and a half months.  Our precious baby boy is alive.  He is gaining weight.  He is developing, slowly … but steadily, at his own pace, in his own way.  He is stable.  He is happy and smiling and sweet and oh.  so.  precious.

I know I have written about this before, but we have developed a rhythm to our days, our weeks…we have become so good, now, finally, at incorporating Kiran into our lives.  We have figured out how to quickly pack up everything he needs to go for a lengthy visit at Nana and Papa’s or a friend’s house – or to go to an appointment two hours away.  I can pack his diaper bag for a quick outing without even thinking about it – with or without a feeding, depending on the time of day and length of outing.

I have finally, finally grown comfortable in this “interstage” period.  I’ve got this down.  Even with all the changes that have been thrown our way – with all the new skills I have had to learn.  Today, right now, I am confident and comfortable in caring for my son.  I am loving summer.  I love going out to events, taking him for walks, being less worried and crazy about germs and illness….

I.  Don’t.  Want.  To.

I don’t want to go back to hospital living.  I have hardly even gotten a taste of it compared to what is to come with this surgery.  I am not looking forward to it.

I don’t want to go back into cold and flu season.  I don’t want to have to be stuck inside, unable to even take him to the grocery store because a cold, especially when recovering from open heart surgery, can absolutely land him in the hospital.

A billion emotions pass through my body every single day as we approach this surgery.  Today, right now, it’s that I don’t want to give up this beautiful life we are living with our son.  I am scared of how it will all change.  I am scared of how HE may change.

I am trying to embrace the “I don’t want to” feeling by enjoying every moment.  I have slowed down with Kiran a lot the last couple of days.  I have savored the laughs and the snuggles.  I have said to hell with the housework and chores – I go like crazy when he’s napping, but when he’s awake, I’m enjoying him.  We are being intentional about giving ourselves some nights out to recharge – and also, honestly, because I don’t know how long it will take post-surgery for me to feel comfortable leaving him with a babysitter again (Even though, as I’ve said before, we have the best babysitters – and they are new nurses, no less….)

And – tomorrow, we are taking Kiran to the zoo.  I have absolutely no idea how much he will get out of it, but I have been wanting to take him.  I want him to have that experience.  And one of these soon days, I am finally putting up his little pool.  I still haven’t gotten out to buy a new swimsuit but so what?  If I have to sit in it in my clothes with him, I will.  I want him to splash and play and laugh and know what it’s like to sit outside on a sunny day in a cool pool.  On his ten month birthday, (I got the ok from the pediatrician), I am letting him try a bite of vanilla ice cream.  I don’t know why these are the things that are important to me, but I want him to experience ice cream.

I guess you could call it a bucket list.  It is true it is wrapped up in and around my fears of losing him….

But no matter what, I want to experience life fully with him.  I want to teach him to see and taste and feel and hear and smell with everything he is.

We are going into a difficult season.  We are entering into a new world.  None of us will come out of this experience the same.  I don’t pretend to know how we will be different…I just know we will be.  So I am going to savor the moments right now, when we are in this season.  I am going to do my best to make sure we are all entering this new season well-rested, filled up with joy, and as strong as we can be.

This song, The Fighter by Gym Class Heroes, Kiran’s song I picked for him in utero, still says it better than I can.  Everything I am trying to say can be summed up in one line, like it or not: “Gonna live life till we’re dead.”

I love that line.  It’s what we should all be doing.  It’s what I have always been striving for.  To LIVE LIFE.  33 days until surgery.  We’ve got a lot of living to do.