Anxiety outside the trenches

When I find myself in the trenches – deep into things – I am able to roll up my sleeves and do what needs doing.  I have seemingly endless pockets of strength and bravery and resilience.  I fight and fight and fight.

When I am finally outside of the trenches – when I have caught a cool breeze – experienced a more calm period in life – and I realize I may have to get back in those trenches….

That’s when the anxiety takes hold.

This isn’t new news about who I am.  My anxiety has always manifested itself in this way.  After a break from college, thinking about going back would cause me anxiety…even when I had found my people and my niche, even when I enjoyed school immensely and knew I’d be okay.  Now, with my new business, the Pickle Shack … before every single event, I experience anxiety.  I am unsure if I will be able to handle the hustle and bustle of the day.  But once I’m in it – I rock it – and I gain confidence as the moments pass and I am able to handle them.

In so many ways, being in the trenches with Kiran’s medical needs was easier on me than the period we are in now.  This feels like such a bizarre period of limbo.  And we have had so many slower weeks – fewer medical appointments, time to just be a family….

Tomorrow is a big appointment day.  I can’t believe three months have already passed, and it is time to see cardiology again.  I am hopeful we can manage to keep Kiran still for his echo so we are able to get a good look at that heart of his.  I feel everything will look good, but I still have great anxiety it may not.

We will be meeting with a new GI doctor and a new nutritionist.  I am hopeful we will feel comfortable and confident with their knowledge – I am hopeful they will feel like a better fit to our medical team.

I have to gear up to be “that” mom – find my strength again to advocate, find my brain again to ask all the questions.  It’s been awhile since we’ve had these kinds of medical appointments.  That paired with finally starting feeding therapy on Thursday – this feels like a monumental week.

I honestly don’t feel ready for it.


Day 23 – Fear

I have been posting on facebook every day this month about congenital heart defects in order to raise awareness.  This morning, when I came across the topic for today (on the list I am following; there are others), it stopped me in my tracks.  I decided it was time to write my fears out – the ones I have been attempting to avoid since we got Kiran’s eye surgery date.

Funny thing about fear is it is often illogical.  In my case, it is really not based on any sort of reality or evidence.  Kiran has always done extremely well with anesthesia.  He comes out of it fine and recovers quickly.  He came out of the OR extubated after both cardiac caths and after his g-tube surgery.  He is a rockstar.  And this was all BEFORE his unifocalization and repair.

But for some reason, every time I think about this upcoming surgery (March 22, one month from yesterday), I feel the fear squeezing my chest.  I want to burst into tears.

It is amazing how often I feel like a two year old throwing a temper tantrum inside.  I want to stomp up and down and scream “I. Don’t. Want. To!”

I don’t.  I don’t want to.  I don’t want him to go under.  I don’t want to hand him off to a surgeon.  I don’t want to have to wring my hands and wait in a stupid hospital waiting room.

It’s a simple eye surgery.  Our cardiologist even signed off on the team using an experienced pediatric anesthesiologist (though the cardiac anesthesiology care team does know about the procedure and will be on hand if needed).  Even that makes me nervous.  And yes – I questioned it and advocated and got the answers to my questions and ultimately am sorta maybe kinda okay with it….

But they expect it to be an outpatient procedure.  No one anticipates any complications.  Kiran’s heart functions very close to normal – many people who now listen to his heart even say they would have no idea of his history by listening to it. (Well, if it wasn’t for that giant scar on his chest)

The entire reality points to everything going smoothly and being just fine.

And my mom brain just keeps thinking – We’ve come so far.  He has rocked recovery so many times.  He survived ten months of life on a heart that wasn’t working at full capacity.  He survived a day-long extensive open heart surgery.  He’s my fighter.  What if…..?  What if, after all of this, a simple eye surgery is what takes him down?  What if, after everything we have fought for and been through…. what if I lose him after all?

Over something so simple.  So silly.

No facts point to this.  Everything points to my son being amazing and doing what he always does.  He’s healthier and more stable now than he has been his entire life.

But I can’t shake the fear.

Upcoming Dates

Things have been pretty quiet – pretty routine – pretty “normal” – at our house the last few weeks.  Regularly scheduled appointments and therapies have happened.  Some fun outings have happened.  Nothing too earth-shattering.

I did chat with Dr. R. about all Kiran’s upcoming procedures and tests that require sedation or anesthesia.  We seem to be on the same page as far as keeping it to a minimum as much as possible while making sure we are monitoring his heart closely.  Nothing as concrete as I would have liked – I don’t have a one year plan or anything, no map or guidelines, as usual – but I think we at least have a good outline of next steps.  March 1st is our next big appointment day, and we are hoping Kiran cooperates for an echo (These are often sedated at this age too – it never ends!).

I just got the call today that we have a slot and insurance approval (finally!) for feeding therapy at Childserve!!!  We will start March 2nd, and we have a slot right after our physical therapy there.  Thank goodness – one trip to Childserve every week is plenty – though we do love and appreciate our services there so far.

I wasn’t as excited about the phone call I got yesterday from Iowa City.  We have a date for Kiran’s eye surgery, and it is sooner than I expected.  March 22nd.  More on that as the time gets closer, but for now, please remember that date as we will again ask for your thoughts and prayers.  Eye surgery isn’t heart surgery…but it’s still surgery, and it’s still a hard thing to wrap my brain around.

For tonight, our date will be staying in.  Yummy snack foods, a walk, snuggles, early bedtime (for the K-man at least)….Nothing earth-shattering…just the way we like it.