I cherish my child.  I love him.  I am thankful to be his mom, and I wouldn’t trade him for any other kid.  Still, sometimes, I find myself needing to grieve the child I always envisioned I would have.

I have always wanted to be a mom.  More than anything in the world, I feel it is my true calling.  I have always loved kids, and I gained a lot of experience with raising healthy kids during my time as a nanny.

I have never wanted to be a nurse.  I was never drawn to work as a nanny for family with children with special needs.  It always intimidated me.  Medical equipment intimidates me.  I have zero interest in being in the medical field in any way, shape, or form.

And yet.  Here I am.  The medical expert on my son.  I have been forced to learn and do far more than I ever wanted to.  It’s scary.  Especially when things are new and we are in a recovery period, like now, it’s terrifying for me.  I never know if I’m doing it right.  I never know if I will miss something big.  I never wanted to have to worry about this stuff.

It was not the desire of my heart.

But Kiran is.

So many things have changed because of him.  Because of who he is, because of his heart condition, because I love him differently than I’ve ever loved another being.

I always hated pacifiers.  I was never going to give my child one.  Or, if I did, I was going to wean them off early.  Now, I am thankful Kiran loves his pacifier.  It gives him the oral practice he needs to eventually take more food by mouth.  It is a comfort when we are in the hospital.  It is a reminder, while he is being pump-fed, that sucking produces fullness.

I always loved schedules.  I had all my nanny kids on eating and napping schedules within the first week of starting with a new family.  Kids thrive on schedules, but really, so do I.  It is impossible to have Kiran on a schedule.  With all of our many medical appointments and therapy sessions, there is just no way I could adhere to a strict schedule.  So I have learned to go with the flow with that.  We do our best to stick to a loose one.  I have had to let it go.

I always prided myself on helping kids meet or exceed their developmental goals.  Every kid is different, true, but I feel I was very good at progressing a child in that way.  It is so hard for me, sometimes, to remember Kiran is especially different.  We have to practice things in short spurts because he tires easily.  There are days we don’t practice at all.  He is seven months old but probably closer to 4 or 5 months developmentally.  That is hard on this overachieving, perfectionist mama.  It is hard to not feel it is a failure on my part (I never feel it is one for him!)

I have written about this so many times.  This is not how I pictured my life.  And sometimes, like today, I just need a moment to be sad.  I am trying to allow myself that freedom without guilt.  That, too, is difficult.  Because I wouldn’t trade the little man, not for anything.  And I just don’t know how to reconcile all of the emotions I feel.