Work in Progress

I want to exude strength, thankfulness, joy.

I can’t seem to get out from under my grief.

It is not that I want Kiran to be different.  I don’t.  He is the perfect little boy for me.  He is opinionated and charming, happy and strong.  I love him with my whole heart.

It is just that I wish a different life for him.  For me.  For all of us who love him.  I wish he didn’t have to be so strong.  I wish he didn’t have to experience so much pain.  I wish his life could be innocent and pure.  I wish his days could be full of exploration instead of appointments.  I wish he knew what it was like to breathe without working so, so hard.  I wish he knew the joys of eating – and being able to stop when he wants.

I have grown so much more confident caring for him, and he continues to be largely stable.  We have had a relatively quiet few months – no ER visits for awhile, the only hospital stay planned – I don’t know why now is when I am struggling.

Perhaps because I always find my strength when I have to – when he needs me to.  In the quiet, in the calm, I am allowed to break down, just a little.  I am just worried I may find it more difficult to find my strength again.  I try so hard to keep my armor on, always, because I don’t know when I will have to go to battle for him next.

It scares me that I find myself crying more lately.  It scares me that I seem to be having more days when I struggle to get out of bed.


I wrote all of that before going to church this morning.  I don’t know what kept me from publishing it – apparently I had a sense there would be more for me to process today.

The skin around Kiran’s g-tube started looking a bit more red than usual yesterday.  I made a note of it, planned on watching it carefully.  While I was at church, my husband gave Kiran a bath and noticed things were looking worse…Today, there was white pus in the midst of the red.  Infection.  So – off to urgent care we went.  We caught it (of course) at the very start (since we were watching it), so we got an oral antibiotic that should take care of it.

But.  The moment I came home and saw his infected skin, I immediately felt like a failure.  Surely, I must have done something wrong.  I didn’t keep it clean enough, I should have changed the dressing more often…something.  Somehow, it reflects on me.  Somehow, I screwed up, causing my poor baby pain.  I cried.  I beat myself up inside my head and out loud to my husband.

This is how my brain works.  Unfortunately, though I can show forgiveness and grace to everyone around me, in enormous quantities, I struggle showing myself that same consideration.  I struggle with wanting – no, needing – to be the perfect mother, the perfect caregiver, the perfect nurse, the perfect person.  I need the A+, and I don’t know how to be kind to myself when I don’t achieve it.

It is a constant work in progress.  I’m off the ledge now, though I still have the nagging sensation I could have done more to prevent this infection.

What I do know is this: It remains true.  I find the strength when he needs me to.



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