Productive and validating visit to U of I pediatric cardiology today. Got to see two familiar faces from even before Kiran was born and got to meet some fantastic new people as well. As always, cherry on the top is visiting my aunt who works (in a different area) at the hospital and loves showing her great-nephew around. (Let’s be honest: He is pretty great!)

Lung perfusion scan will be next Friday. As long as these results look good, we have been given a cardiology schedule of … EVERY THREE MONTHS!!!  Dr R said this, and I literally said “Wait. Are you sure!?!  Three months?!?” (The longest we have ever gone is 6 weeks and that was a brief period). If all is well, we go back to see him in early March. I am still wrapping my head around this. 

We have been given the green light to wean Kiran off his furosemide (lasix). We can drop off to one dose a day and watch for any changes (fluid retention – so puffy eyes or distended belly). If that goes well, in about a week, we can stop giving it to him altogether and see how he does! Dr R believes he will do quite well with the wean. 

Overall, he looked really good. We didn’t have to do any tests today – no EKG, no x-ray, no echo – Dr R said he would really love to see his heart, but it wouldn’t change anything medically right now. So we will get information from the scan next week, and we will have an echo and ekg in March. 

All in all, it has been an emotionally stressful and exhausting couple of weeks as I have furiously collected information, and Arif and I have sorted through it to make this really important decision.  I had no idea what I was getting into, when I simply started questioning the anesthesia protocol for the lung perfusion scan put in place by most hospitals around here.  I didn’t know advocating for Kiran would ultimately bring us here. But. Here we are. 

And today, we rest in the peace that has come, knowing we have – without a doubt – made the right decision for our son. 

I am not someone who deals well with change.  Good or bad, it causes a lot of anxiety in me – not to mention so many emotions.  A big change has been in the backs of our heads for the past few months, and we are beginning the process now.

I will not get into the specific reasons why we have made this decision, for this blog, while being a megaphone for CHD awareness, will not be used as a megaphone for other issues at this time.

We are moving Kiran’s primary cardiology care to Dr. R. in Iowa City.  We have an appointment with him tomorrow and will discuss with him this transition.  We feel very strongly it is in Kiran’s best interest, and he will receive the best care there.

I want to say this: I am very emotional about this.  It is a BIG deal.  Dr. M. has been an amazing cardiologist – he has been a constant in Kiran’s life since birth.  He has talked me off the ledge many times this past year, and he has been an excellent part of our medical team.  We have loved working with him, and we are sad to be saying goodbye.

But – as life has calmed down – as we have taken an objective look at the past year – all we have experienced, all we have learned, the medical advice given from various sources – we must do what is right for Kiran.  Every decision we have made throughout his entire life has been the very best decision we could make at the time, with the tools we had, with the information we had, with the capacity we had….

We will continue to do so.  We will build up our arsenal of tools.  We will gather the information from our growing body of sources.  We will hopefully gain greater capacity as our rockstar son continues to move forward in his journey with CHD.

This is absolutely an angry post.  I have had the most frustrating, stressful day ever.  I have been on the phone way too frequently with medical people trying to figure out the best course of action for Kiran’s upcoming lung perfusion scan.

If you are reading this blog and you are a member of our medical team, I promise I am actually not talking about you.  But, you may want to hear this (and you may want to make sure everyone working in your office is reminded of it): MY SON’S HEALTH AND WELL-BEING IS NOT A FOR-PROFIT ENDEAVOR.

Let me say that one more time, in a more clear way: I don’t care if you want to make money having my son’s procedures done at your facility.  In fact, if I get the feeling that is the only reason you want it done there, it leaves a bad taste in my mouth and makes me want to go anywhere but there.  My number one priority is making the best decisions, with the information I have, for my son to be as healthy and safe as possible.  As someone in the medical profession or working in a medical office, this should be your number one priority too.

I will not stand for being made to feel embarrassed about doing what is best for my son.  I will not stand for being made to feel badly about making phone calls on my own to other facilities to find out their protocols for a procedure that can have a significant impact on my son’s health.  I will not be bullied into doing something I don’t think is safe for my son.  I have fought hard to keep him alive and healthy and happy for over a year, and I will never stop that fight.  In fact, I am now armed with more knowledge and more experience…and today, Mama Bear had to wake up.

I will never stop fighting for my son.  Ever.

Despite Kiran still battling a cold/cough combo, we had a really good day today.  The type of day when I finally make it out of bed before he does, which means the dishwasher is empty, the bottles made, and my breakfast half eaten before he wakes up.  The type of day when I decide it’s a really good idea to coordinate Kiran’s morning nap with a nice long walk.  When he takes a long afternoon nap, and I am able to not only shower and fold/put away two loads of laundry, but also have time to relax.  When, during his pump feeding session this afternoon, we snuggle and read several books together.

It is one of those days when I am able to realize that I am in charge of my own story, just as Kiran, in many ways, is in charge of his (and certainly will be, completely, someday, sooner than I’d like to think).

We have a lot to celebrate, and we are approaching my favorite time of the year.  I love the holiday season, and I am looking forward to so much wonderful time with family and friends and my darling boy.

I don’t want my story to revolve around feeding frustrations.  I don’t.  I plan to continue to try new things – and once he is a little more recovered, will be moving forward again with the blended food diet transition – and I plan to move forward with Childserve (hopefully) once he has his feeding evaluation.  I will continue to offer him food – a variety of food – but I don’t want it to consume our days.  I don’t want to remember Thanksgiving and Christmas 2016 as a time of frustration.  And I don’t want to give Kiran a complex about food.  I want him to enjoy it.

Surprise, surprise – He refuses to operate on my timetable.  He’s writing his own story.  I could fight it – or try to – but it only makes my story harder.  More frustrating.  Sadder.

I want him to have days full of love and books and walks and laughter and friends and – yes, food – and snuggles and kisses and … did i mention love?  We get to celebrate his bravery and strength and LIFE, and I don’t want to lose sight of that inside a daily frustration about how I feed him.  I’m working to let this one go.  It will be what it will be, and I can only do so much.  So, I’m choosing my story.  It’s a story full of more good days like this, with so much to enjoy and celebrate.

He will start eating orally when he’s ready … or … he won’t.  Either way, he is Kiran, and we are writing our stories together.  I’m thankful.

There is no such thing as an expert in grief.  For a brief moment this morning, my brain tried to convince me that it is something I have gotten a handle on.  I have had a lot of experience with different types of grief.  I have lived with grief for fifteen years.  And four years.  And just over one year.

This morning, I wrote a post on facebook, meant to encourage others in my life who are living inside grief.  Who are currently being ripped apart and changed at the very core by grief.  I wanted to say things like: There will come a time when you will laugh more than you cry, when you remember your loved one/that time in your life/those dreams you once held dear.

It may be true.  For me, when I think about my brother, who died 15 years ago on this very day, I DO laugh more than I cry.  I still shed tears for him, but it is the exception now, rather than the rule.  Instead, I think about the time I had with him, and there is so much to laugh about inside our memories!  His loss will always hurt, and I will always wish he was still here, doing life alongside me.  But 15 years is a long time to live with grief, and you get to a point where the change in you feels more…normal.

But being practically unable to hold back tears at the end of a library story time session with my son this morning, I was reminded that, inside this kind of daily grief, it may not be true.  Perhaps I will always shed more tears over the loss I feel for the life I wanted – not only for myself, but for my son.

I love library story time.  It has been one of my favorite nannying activities for ten years.  I love books and songs and socialization, and it encompasses all of those things.  When I thought about myself as a mom, I thought of weekly library visits for story time.  It was not a dream that could come to fruition, until today.  Until we got the okay to live our life, as if our son is healthy and normal.

But he’s not.  And for some reason, a story time they say is designed for ages 6 mos-18 mos was full of nothing but toddlers.  Every other kid in there was walking around, pointing to their body parts, saying words….while Kiran was in my lap.  He was happy.  He was oblivious.  He was clapping his hands and watching all his new friends.  He was enjoying himself, and I was fairly successful at quelling the panic I felt inside over picking the wrong story time to sign us up for.  Until the end.  When the story time lady blew bubbles.  All of the other kids were squealing, popping bubbles, walking through them….and I couldn’t even tell if Kiran could SEE the bubbles.  And it broke my heart.  And I wasn’t sure I was going to be able to make it to the car before the tears came.  I did, but just barely.

I am learning a new type of grief.  I have experience in grieving loss by death.  I am thankful – beyond thankful – I am not having to experience that type of grief now.  I am thankful to have Kiran still here, living life alongside his mama.  But this grieving of the loss of a life imagined – of dreams dreamed – is messy business.  And sometimes, I’m going to sit in my car in the library parking lot and cry my eyes out.

CHD sucks.

This is one of those mornings.  I woke up immediately overwhelmed.  This is not an unusual occurrence.  I have every intention to get up with my alarm so I can have 20-30 minutes to wake up and get organized, so I can greet my beautiful baby boy with a smile on my face when he wakes up around 6:30.  I know – we are lucky – he tends to sleep until then most mornings.  He even normally sleeps through the night.

But I turn my alarm off, every morning, and I am awakened by his cries instead.  And we have to hit the ground running.  And I am not the mom I want to be.  First thing.  Failing.

I feel like I could go-go-go, every single day, from 6 am to 10 pm, and I still wouldn’t make a dent on my very overflowing plate.  I didn’t even shower yesterday.  How am I back to this?  We are currently trying to find a new balance.  We got nothing done in our house last year – or with our finances – or in the yard – or anything….We have to now figure out how to live a life with a healthy child who still has fairly significant needs.  Failing.

I am frustrated with the feeding.  I am frustrated that, a year in, I have still not found my peace with this.  I feel our medical team is giving us very little direction, and I am left waiting.  We have a feeding clinic evaluation at ChildServe, but they couldn’t get us in until mid-December.  I don’t want to wait until then to start helping him, but I am overwhelmed trying to do the research on my own.  In the meantime, he is still very inconsistent with what he will take orally, and we keep pumping it into his stomach, which feels more and more…wrong to me.  I am starting to look into blenderized diets because our GI doctor wants us to move away from infant formula (of course – makes sense) but I do not want to give Kiran pediasure.  Even this is overwhelming.  I did get the number for a nutritionist, so hopefully she will be able to help me get started when I can find the time and energy to call her.  Failing.

I am frustrated with how little I know, still, again.  Kiran has outgrown his infant bathtub and sling seat – honestly, he’s been too tall for it for a couple months now – but I have no idea what kind of bath seat/support to get for him because he is still not able to sit without fairly significant support.  And of course, I just keep hoping he’s going to sit up soon, and we can just make do for a little while longer.  But I need to do something different to make bathtime more comfortable for us both.  Failing.

I take him to ChildServe today for a physical therapy evaluation.  It will simply feel like another reminder of just how far behind he is developmentally.  He started rolling from his tummy to his back just recently – days before he turned one – and it’s exciting, and we celebrate it…but it also makes me want to cry.  Failing.

I just feel like I’m failing, in every area.  I feel like I have exactly zero things together.  And every time I take time for myself (like now, writing this blog in order to maintain my sanity), I feel I am taking much needed time away from him.  I could be researching bath chairs.  I could be finding recipes for the blenderized diet I want to switch him to.  I could be reading up on tube weaning.  I should be doing all of those things, and it does little to assuage my guilt when I remind myself I will not be a good mother on the insanity ward either.

Why is it, as a mother, I see all of this as a failure on my part?  Kiran is Kiran, and he is who he is because he had a heart that was working incredibly hard for the first ten and a half months of his life.  Of course he will have feeding issues.  Of course he will be behind developmentally.  It makes sense, from a medical standpoint.  There is a valid reason behind it.  And yet, I can’t shake this feeling that I am failing him, every day, because of these very things.

I know, in my head, I am doing absolutely everything I know to do, to help him make progress in these areas.  In my heart, I just feel like I am not doing enough.  It is never enough.  I just don’t know how to give him everything he needs while maintaining some sort of balance in self-care and also living a good life.

The most important thing I want for Kiran is to live a joy-filled life.  I want him to know he is loved.  I want him to laugh.  To experience many things and people and places.  I just want him to soak up every moment – it is what I want ultimately in my life too.  I don’t want to be this mom – the mom that is so stressed, frustated, overwhelmed – so focused on getting him from one place to another – that I forget to snuggle him and laugh with him and enjoy him, every day.  I don’t want to forget to take him outside for walks.  I don’t want to forget to read him stories.  I have always struggled with balance, and I guess I just want to figure out how to err on the side of too much joy and silliness, rather than too much work.

But I am failing.