A complicated topic my entire adult life, my definition of love has been ever-changing.  But I never understood it – not really – before becoming a mom to the child I was blessed with.

Loving Kiran looks very different from loving anyone else – or even from how I expected loving a child would look.  It is love in action.  It involves a lot of advocating and physical care-taking.  It is often putting my own needs to the side in order to attend to Kiran’s needs.

It is exhausting and rewarding and the best love I could have ever imagined.

And Kiran’s love?  Pure.  Though he requires a lot on a daily basis, he really doesn’t ask for much.  He just loves being with me – being with people.  He just wants attention and to be heard.  He is not a particularly needy child, while requiring so much more care than most.

I have always known the purest form of love is being willing to lay down your life for someone else.  I have never felt that kind of love more than I feel it for Kiran.  And not just my actual life – if I could, I would take on every challenge, every moment of pain, every prod, poke, surgery, negative experience – if I could, I’d give him everything good from my life and take on everything bad from his.

But I love him, best I can, how I can.  I walk alongside him.  I encourage him.  I take care of him.  I lose sleep for him.  I fight for him.  My entire world has changed because of him, and my entire concept of love has been shaped by him.

I can’t imagine ever loving anyone more.  I tell him all the time: Kiran is my favorite human being.

This is fitting, since I didn’t get around to posting yesterday due to Kiran being ill.  And I am sitting here attempting to be coherent this morning after basically sleeping not-at-all last night, due to Kiran coughing, crying for me, and gagging as if he was going to be sick all over the mattress I pulled to the floor so he could safely sleep next to me (That’s love – or insanity – it’s a fine line).

I never thought I would live a life where doctors and nurses would really matter to me the way they do now.  I hate going to the doctor – still do – but it has always been such an infrequent nuisance for me.  I never gave much thought – or had much of a relationship – with any of them.

But with Kiran, it’s different.  With Kiran, we have relied on doctors and nurses from the beginning.  We have lucked out and started with some really great doctors and specialists on his team – and we have had to rework some of his team along the way to provide the best care for Kiran.  I feel solid with everyone currently on his medical team and am so pleased with the relationship we have with them – and they have with Kiran.  We truly have people who care about Kiran’s well-being.

And the nurses.  We have had so many great ones, but two have really had significant places in Kiran’s life.  When I had to say goodbye to Nurse K, Kiran’s home health nurse from birth until after synagis season when he was one, I was terrified.  She was someone who stopped in once or twice a week to make sure Kiran was doing okay.  She was the one who kept me sane and patiently answered all my many questions, and she cared about Kiran so much too.  Losing that relationship was hard – I wasn’t sure I could do it on my own.  I have learned that I can, but we still miss Nurse K.  Nurse R is another one who has known Kiran since birth.  She worked in his pediatrician’s office up until recently – and – thank goodness – was kind enough to allow me to still message her with questions/concerns even though she is no longer working there.  She knows Kiran’s health history – and Kiran’s personality – so well, and truly loves him.  I messaged her just last night, wondering about the best course of action (doc visit or not) if I have suspicions Kiran is battling the flu.  She never makes me feel crazy and always puts my mind at ease.  I can’t imagine not having her in our life, especially when I’m spiraling within my anxiety and don’t see the point in talking with someone who *doesn’t* know Kiran.

I know there will be turnaround.  We had to say goodbye to one of Kiran’s specialists this past year.  His endocrinologist, the last specialist to join his team, so it stung a bit less than if it had been a more long-term medical team member.  But I know the day will come, and I dread it.  We have good people who genuinely care, and I couldn’t be more thankful for every single one of them: Kiran’s pediatrician, cardiologist, gastroenterologist, genetic ophthalmologist, orthopedic surgeon, geneticist, endocrinologist, feeding clinic team, and neurodevelopmental team – and of course, the nurses.  The doctors couldn’t do it without them, and we couldn’t either.

I had exactly no – zero – knowledge of congenital heart defects before Kiran was diagnosed when I was 22 weeks pregnant.  A newborn with heart issues wasn’t something that was even on my radar.  I had never known anyone born with a heart defect or who had a child with a heart defect.

When Kiran was diagnosed, I was thrown completely blind into a world I knew nothing about.  And since then, I have made it one of my life’s goals to be sure that everyone I know – everyone Kiran knows – has an awareness of what CHD is all about.

1 out of 100.  Congenital heart defects are SO prevalent.  And SO underfunded.  It is another reason I use this blog and my facebook page (especially during heart month) to increase awareness, understanding, and the necessity of research.  Without the research that has already been done, Kiran would not be alive today.  1 out of 100 babies in the United States are born with a congenital heart defect; 25% of them will need a life-saving operation before they reach one year old.

Kiran is in that 25%; he was born with a critical congenital heart defect.  69% of babies born with a critical CHD – babies like Kiran – are expected to survive to 18 years of age.  Do you want to know the importance of research in this area?  Between 1979 and 1993, about 67% of babies born with critical CHDs survived to one year.  Between 1994 and 2005, that percentage increased to 83%.  I would imagine it has continued to increase in the last 14 years.  (These statistics taken from CDC’s page on CHDs: https://www.cdc.gov/ncbddd/heartdefects/data.html  – I would encourage you to click that link and read more statistics about congenital heart defects).

Though Kiran’s heart story, so far, has been relatively textbook – and his other diagnoses, more significantly impacting his daily life, are at the forefront of my mind instead – I will never take for granted the opportunity for life Kiran was given.  His extensive, complex surgery – pioneered by his heart surgeon, Dr. Hanley – was unheard of 40 years ago.  I don’t know exactly when Dr. Hanley began performing the surgery, but I know he completed his fellowship in 1988.  There are new and exciting advances happening in the field of tiny hearts – I am just thankful Kiran was born when he was.

So.  Educate yourself.  Ask me any questions you might have.  Share my facebook posts, CHD facts, my blog.  Give to heart organizations that have a focus on pediatric heart interventions.  Gain knowledge.

It matters.  It matters so much to our family, but it also matters to 1% of other families,  40,000 families per year in the United States, facing a life they never imagined.

 

 

My heart is heavy with this topic.

No parent should ever have to bury their child.

It says so much, yet fails to fully encompass what that experience is like.  I assume.  I cannot express what that experience is like.  I have watched my own parents bury my brother, so I have perhaps a closer, fuller understanding than most … and I have lived in very real situations when it could have been a possibility for me, so I have perhaps a closer, fuller fear of this than most.

It is a fear tucked away, but just barely.  It surfaces far too often.  It is part of living the heart life.  So many sweet warriors gone too soon.  I grieve and cry and pray and my heart screams on behalf of so many sweet families who have to say that horrible goodbye.

Today, so many days, I remember these heart warriors.  I remember their stories, their battles, their passing.  Each one I hear about affects me in a deep, real way.

I cannot fathom.  I hope I never have to know the experience personally.

For those who have…Know that I remember your heart warrior too.  I love them: their life, their stories.  I know their names.  They will not be forgotten.

 

It feels disingenuous, somehow, to skip writing on this day.  But I have to be honest – every time I try to write this post, it falls flat.  It ends up not sounding sincere or real.

I don’t feel I have the right to write about Kiran’s dad.  I never felt I did; I never felt it was up to me to slap my emotions onto him.  If I know one thing about life, it is this: Everyone’s experience is their own.  It is based on past experiences, one’s internal dialogue, the glasses tint through which we view the world around us.

It doesn’t mean I don’t appreciate the things Kiran’s dad brings to the table.  I do.  I acknowledge and appreciate them often, out loud, to him and others.

But it is a topic that holds too much pain for me, still.

I love anything with a heart on it.

I can rattle off the names of multiple specialists and therapists without pause.

I still sometimes panic when I think I catch a hint of blue around your lips, even though they have only ever turned blue once.

I will never forget how to count your breaths, and I learned very quickly what your normal retraction looked like during the months leading up to your surgery.

I know more medical jargon than I ever thought I would, and I have found my voice and my place in the medical world.

I fight alongside you; I take your battles personally; I advocate, advocate, advocate.

I have perfected the art of saying goodbye, just in case, even though every ounce of my very being clings to the hope that it is just another see you later.

I am a heart mom.

 

 

You have fought to be here from day one.  From that first mighty newborn cry that put this mama’s heart at ease – and made it swell with a pride I had never felt before – to the exaggerated, intentional steps you now take in your gait trainer, life hasn’t come easy for you.

I think we think of warriors as actively fighting – a constant motion – a sword drawn, worn and bloody from battle.  But that’s not the type of warrior you are.  Your body has fought some significant battles, but you do so quietly.  You are a warrior of resilience and determination.  It’s a quiet strength, of a kind far stronger than one of significant volume.

You have been through far more in your life than I have.  I experience only a taste, as I walk alongside you with every step.  But your strength astounds me every single day.  Your willingness to keep putting one foot in front of the other, even when (we are told) every bit of progress comes much harder for you.

You show up.  You do the work, every single day.  And you do it with so much enthusiasm and joy.  So many smiles and giggle-fests.  You are the reason I am able to keep showing up, too, even on my darkest days.

If you can fight, every step, every day, so can I.  So will I.

For you, my heart warrior.

 

“10-21-2015”

I say it often, just like that “Ten – Twenty-One – Twenty Fifteen”

Every doctor’s appointment, every test, every ER visit, every hospitalization with every prick and poke, “Could you confirm Kiran’s date of birth?”

“10-21-2015”

I have to stop and think, now, when I am at an appointment for me.  My OWN birthday doesn’t roll off the tongue like it once did.  I am so used to his.  His numbers come more easily to the front of my mind, to the tip of my tongue.

“10-21-2015”

The day my entire world changed.  He didn’t come until 11:06 pm.  It was a long day, waiting for him.  It was a long day, waiting to see what would happen to him once he was no longer safe in my womb.

“10-21-2015”

The day we met.  The day our journey truly began.  The day I got to see him, but just for a second, and steal a quick kiss on his soft cheek, before they had to wheel him to the NICU, flanked by several doctors.

“10-21-2015”

Other than that brief moment, I didn’t actually get to spend time with my son until 10-22-2015; it was well after midnight by the time they allowed me to get out of bed and be wheeled up to the NICU to see my darling boy.  I never wanted to leave his side, but of course, I was still a patient.

“10-21-2015”

The day my biggest dream was realized: Kiran made me a mom.

 

I just realized – since the heart month challenge is actually a photo challenge on social media – I don’t think I have a single picture of Kiran getting any of this testing done.  I also have no idea how many Echos and EKGs and X-rays he has had in his life – I just know he surpassed me long, long ago.

From birth up until his heart surgery at ten and a half months old, we were basically going to the cardiologist every other week.  We *might* have started going closer to once a month for a period of time; I no longer recall for sure.  I just know that it was a routine part of our life, for sure.  His cardiologist at the time (we have since switched) performed all three of these tests basically every time Kiran saw him.  His heart was very closely monitored, to say the least.

Since heart surgery – and since switching cardiologists – I am thankful Kiran’s heart is no longer x-rayed on a regular basis.  He still gets an Echo and EKG done at every visit, but our visits are much more rare now – We are actually living inside our first YEAR between cardiology visits!  Kiran saw his cardiologist in August, and, unless concerns pop up, he doesn’t need to see him again until this coming August!

We are lucky – again with the luck! – Kiran has always cooperated pretty well for these tests.  He used to HATE getting the x-ray when that was being done on a regular basis – it was in a different room, so we would just hear him scream and cry and get mad – but he has always taken on the Echos and EKGs like a champ.  Star patient.  It’s a good thing, because he’s been a frequent patient his entire life.