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.

In a perfect world, I would have had the time and energy to sit down on Kiran’s birthday (Friday, October 21st) to reflect on all this year has brought us.  Or perhaps I would have penned a poem, describing in flowery language everything he has taught me and all the joy his presence brings to my life.

Instead, I spent that entire day – and the entire weekend that followed – doing exactly what I should have done, tucked inside my imperfect world.  I cherished every moment with him, and we celebrated like we’ve never celebrated before!

On Friday, Arif and I took him to the pumpkin patch.  Though I am thankful we finally did this, as it had been on our to-do list all fall, we realized upon arrival there was nothing much he’d really appreciate there.  And at $10 per person, we opted to just take some cute fall photos and buy some pumpkins.  Still.  Fun outing!

We then welcomed our good friend from Seattle.  Friday afternoon was largely spent baking the birthday cake (Arif’s jurisdiction; he practiced a couple times earlier in the week!) and playing with the birthday boy.  We then had our closest family over for pizza, cupcakes, and ice cream.  Gifts were given.  Cake was tried.  It was a beautiful night.

Saturday was the big party day.  All morning we worked in preparation for Kiran’s lion-themed party.  We had many friends (including kids!) and family come to join us in our rather large celebration of Kiran’s life.  Though fun, this was probably the most exhausting part of the birthday weekend.  We were so thankful, though, for everyone who came to love on Kiran and celebrate his life with us.

Kiran was pretty exhausted from his party too.  He went to bed early Saturday night, and we had a couple friends over for a very lowkey fire in the backyard firepit.  This is easily my favorite thing to do on these crisp fall nights – it’s a wonder I don’t beg Arif to do it every single night!

Sunday was the Superhero Heart Run, which all but two from Team Keen on Kiran walked.  We had such an incredible turnout for our team (and all the others) – it was a lot of fun!  Probably the most emotional part of the entire weekend for me was the Heart Kids Parade right before the run began.  To make it even more momentous in my mind, it was immediately followed by a bubble blowing for the Heart Angels who have passed away.  All I could think, walking next to Arif and behind Kiran in his Captain America shirt, was: I am so lucky to be walking in the parade with my son instead of blowing bubbles to honor his memory.  So lucky.

This weekend could have been so different.  Our story with Kiran could have gone so incredibly differently.  I never lose sight of that.  It is always tucked back behind every challenging thought, every fear, every frustration…I always know, deep in my heart, I would take all of that over the alternative.

So, my sweet darling Kiran, know this: This has been the best and hardest year of my life.  I am so thankful to be your mom.  I cannot imagine my life without you in it.  I am the luckiest woman in the world.  And I love you more than I could ever begin to express in a silly little blog.

You are my sunshine.

Kiran got a wonderful early birthday present at his cardiology appointment yesterday afternoon.  Dr. M. said everything looks great.  He is like a totally different kid.  When I asked if he has any restrictions at this point or if there is anything we should be concerned about, he said we can treat him like a normal, healthy child.  He encouraged us to “Live your life.”

Talk about a perspective shift.

Life is such a precious gift, and Kiran has been blessed with an amazing journey.  Tomorrow, he will be one.  We cherish every day, and our emotions have been running particularly high as we approach his birthday.

We are so thrilled we have come this far with our family still intact.  We couldn’t be more lucky, waking up to his smiles and roars.

But we know this isn’t the end of our journey.  And we know for many families, the journey looks a lot different.  CHD research needs more funding.  We need to continue to move forward and provide awareness and focus on more effective treatments – maybe even someday a cure.

Part of living our life with Kiran is being a voice for congenital heart defects.  We will be celebrating our son’s life, his strength, his resilience, all weekend long.  On Sunday, we will be walking in the Superhero Heart Run, for him.  His lion and his monkey will ride along in the wagon with him, both symbolizing journeys that are close to our hearts right now.

I will make one more plea.  Come join Team Keen On Kiran and walk with us on Sunday.  You can register day of – contact me for the information or look up Superhero Heart Run Des Moines.  Or, if you are able, consider a donation to help further this important work.

Without all of the advocating voices before us, Kiran would have never had the chance to be told to simply “Live your life.”

Just like that, he reminds me why I am on this path. He reminds me of everything I have to be thankful for. He reminds me how much I love. 

He reminds me how lucky I am. How blessed. 

How do we, as humans, hold such conflicting emotions – such deep sorrow and deep joy – inside us all at once?

There is a darkness I fall into sometimes, of my own creation.  It is never that I forget how much I love Kiran – It is never out of a desire that he be different than he is.  And it is never out of malice toward others with healthy children – It is never that I want anyone – ANYONE – to have to experience this whirlwind, though so many I am connected to have been living inside it much longer than me.

But sometimes, I just plain feel sorry for myself.  Sometimes, I just look around at all the healthy children my friends are raising…or I think about all the healthy children I helped raise as a nanny for nine years…and I just think WHY?  Why me?  Why couldn’t I have had a healthy child?  Why couldn’t Kiran have been born with a healthy heart?

I cry in church all the time.  These last four weeks, the sermon series has been on suffering.  I have literally sobbed.  I hate crying in public.  I do.  But so many of my emotions have been so raw, and now that I have been able to live inside the exhale, post-surgery…I have a little more time and space to feel them.

This morning, the pastor was using a story about his almost one year old son using sign language as a means to communicate, to illustrate something within the sermon.  I just so happened to be in the bathroom during the story (there are speakers so I could still hear the message, even while dealing with my overactive bladder).  I am so thankful I was in the bathroom, because that simple story just made me cry.

I taught so many of my nanny kids sign language.  I had the excitement and the feeling of accomplishment when they could sign back to me.  It is yet another developmental goal that Kiran is so far from.  And sometimes, that stuff just hits me.  And I’m sad.  For him.  For me.

I am not different in any significant way from anyone else with a medically fragile or special needs child.  I am fairly certain none of us grew up imagining our family this way.  I dreamed about being a mother my entire life.  I devoted my post-college years to being a professional nanny because I essentially got to live the dream and get paid for it, while waiting for my own personal dream to come to fruition.

It is nothing like I imagined it would be.  And I wonder why this is the path I’ve been placed upon.

I think I am beginning to come to terms with the fact I may continue to grieve for awhile.  It’s a different sort of grief.  It’s the letting go of the life I always dreamed of, the one I always imagined.  And it’s learning to embrace, every single day, the life I have been given.  The life with the strongest, bravest little boy I know.  I wouldn’t trade it, but there are days I’m frustrated with it and deeply sad about it anyway.

Kiran had his echo this morning.  It’s amazing how quickly my brain is transported to a state of panic.  I seem to always go to the worst-case scenario.  As we were waiting for Dr. M to read the results of the echo, I was just clutching Kiran, trying to make my heart stop racing.  It didn’t work until I heard these words:

The echo looked great.  Everything looked as it should.  The echo technician was then able to tell us that she wouldn’t have even been able to tell he was a heart kid by what she saw – that is how wonderful Dr. Hanley is!  It continues to amaze me that he has near-normal function now.  Crazy.

Of course, this doesn’t answer the question of why he is sweating and why his heart rate has been elevated.

We kept our appointment with the pediatrician, just so I could be sure there wasn’t something basic I was missing.  She checked for any signs of infection and just did an overall body check on him.  We chatted about his symptoms.  We chatted about his tummy issues and some feeding changes.  Overall, he looked fantastic.  We are a bit stumped.  Our pediatrician is going to do some reading on it – and I am going to continue to pay even closer attention to when these episodes are happening – and we are going to chat again early next week.

I did reach out to the MAPCAs mamas and papas facebook group yesterday, and one mom said something that made sense to me.  Her son also had the sweating episodes – bad enough that she would sometimes have to change sheets in the middle of the night, even! – and her cardiologist told her his body just needed time to regulate to his new anatomy.  She said the sweating went away right around six weeks post op, which seems to be the magical timeframe for everything.  I am hopeful that may be all that is happening here.

So – no definitive answers.  That seems to often be the case.  But definitely good to know his heart and arteries are looking as they should.