Heart Month – Day 28 – Conquering CHD

This is what heart month is all about, for those of us affected daily by congenital heart defects.  I write every day – or at least the equivalent of 28 topics – during the month of February in order to bring about awareness.

But why?  Why make people aware?  If you are not aware – and if you have no understanding about the prevalence, severity, and all-encompassing nature of CHDs – you don’t know how to support families like mine.  You don’t know where to give to help support research.  And without research, there will be no conquering.

We need a cure.  1 in 100 babies born have a heart defect.  This affects so many.

Bottom line: Kiran would not be here if those who came before us hadn’t fought: for awareness, for research, for a cure.  The heart world has come a long ways in recent history, but we have a long ways to go!

I say it a lot: Kiran will change the world.  And he is!  With my help and my voice, he is changing things.  We are conquering little battles in our lives, and we will keep fighting for the big ones.

Fight with us.  Bring about awareness.  Share my blog, share my posts about CHD, share the story of a brave little warrior who is changing the world.  Give money to organizations supporting pediatric heart research.

It’s a long road ahead, but we journey together.  Our work doesn’t stop because February is over.  Let’s fight to conquer CHD, one day at a time, together.

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Heart Month – Day 27 – Future

I don’t know what your future holds, little man.  I don’t know if you will ever walk on your own two feet without the help of assistive devices.  I don’t know if you will ever say “mama” or utter any words at all.  I don’t know if more diagnoses will be uncovered or if your lifetime will be tragically cut short by one already on your list.  I don’t know.

What I do know?  I am fighting for your future.  I never thought I would be this person, but I fight fiercely for you.  And I will continue to.  I will fight for your safety.  I will fight for your right to hold space in this world.  I will fight for accessibility for you.  I will fight and I will fight and I will fight.

I will never stop fighting for the best possible future for you.

Heart Month – Day 26 – Community

My friendship post yesterday probably came off as a little harsh.  I will be honest – yet again – it has been a tough month.  I haven’t had a lot extra to give.  I haven’t been out of the house much.  I’ve been struggling with what I always call the darkness.  I’ve been simply downright depressed, to be honest.  Between illness and weather, it has been a brutal winter.  I feel like 2019 hasn’t been good to me.  Yet.

So despite my no bs approach to the concept of friendship, the truth is this: Every single person reading this makes up our community.  Everyone who cares enough to invest time in our story is a part of our community.  So many of you reach out with just the right thing I need to hear at the perfect moment.  Every time I feel like I have fallen down and there is no way I can possibly get back up yet again, your words provide the hand I need to grab hold of to get back on my feet.

I couldn’t do this without you.  Kiran is lucky to have so many people who love him, some who have never even met him.  I know he has a big cheerleading squad, all over the world, and it is heartwarming.

There is one very special community of people I could never do this without: The Heart Moms.  I would be lost without them.  Nobody knows my story as well as the others who are living similar ones.  The ladies who have gone before and can offer insight, humor, empathy…I could never thank them enough.  It is (I believe) the second ever blog post I wrote on here, all about the group you never wanted to be a part of but couldn’t imagine living without since you are.  I never wanted to be here, in this community of heart moms, but man, I tell you what: Heart moms love with a fiercer love than any I’ve ever witnessed.  Maybe it’s because we are all about the heart.  It changes something in us, when we have to let our little one’s hearts be operated on.

Thank you for being here.  All of you.  Thank you for loving us so well.  Thank you for educating yourselves and sharing our story with others – keep doing it!  This community means the world to me, and I’d be lost without it.

Heart Month – Day 25 – Inspiration

It may seem non-traditional, and a bit backwards, but my son is my inspiration.  Kiran has taught me more about strength, perseverance, and character than anyone I have ever met.

Despite his list of challenges growing and growing and growing over these past three years, Kiran’s determination and will have remained the same.  He, too, keeps growing and growing and growing.  He pushes forward, works hard with every therapy exercise, and has a smile on his face through most of it.

What I can never get over, though, is his joy.  And his desire to spread that joy, to share it with me and with others.  Even when he had a fever and was decidedly miserable, he would try to give me the occasional smile or giggle.  He wants to see the people around him happy, and he just radiates that happiness.

All.  The.  Time.

I know he doesn’t know anything different than the life he is living, but he lives it with such grace.  He has such a good attitude, a kind spirit, a never-give-up will…. He is just so strong.  He inspires me every single day to be better, to be more like him, to give him everything he needs to be the best.

I can’t even express how much I love him – and what an inspiration he is to so many people who know him.  I have no idea how I got so lucky to be his mom – to be his advocate – to be his voice – to be his biggest fan.  But I know I will never win the lottery, because all my luck was used up getting to have Kiran as my son.

Luckiest.  Mama.  Ever.

Heart Month – Day 24 – Friendship

Friendship.  What is there to say on this topic?  Friendship, for me, looks so different now than it did prior to Kiran.

For one thing, I have even less interest in superficial relationships.  I don’t have time to try to nurture along acquaintanceships that lack substance.  If you are not ready and willing to dive into the real, into the deep, into the darkness, with me…I am not even going to apologize; I don’t have time – or energy – for you.

On the other hand, so many very real friendships are developed and maintained through a screen.  People who take the time to reach out, right when I need encouragement.  The people who consistently check in with me, just to see how I am doing or if I need anything.  The ones who understand that sometimes, the occasional text is all my life will allow, now.

Friendship, for Kiran, well.  He is everyone’s friend, and everyone is his.  I see so much of Aaron in him, when it comes to his socialization.  He loves people, and he loves attention – and that’s it.  If you pay attention to him, he is your friend.  He has the time and the energy, always, for you.  So even if I can’t, Kiran will be your friend.

Heart Month – Day 23 – Scars

I have been working on this piece of writing, off and on, for awhile now.  Unlike my blog, where I just allow my soul to pour out through my fingertips, when I try to actually write something, I am never happy with it.  I never feel like it’s done.  So, this isn’t done.  But it is fitting for today, so I will share it, in its undone, imperfect format.

Shortly after my son’s open heart surgery, his physical therapist taught me how to massage his scar.  Scar massage is important because it keeps the skin pliable. It lessens the pain – helps the skin feel less tight with movement.

Over two years in with frequent massage, my son still gets anxious when I touch his scar.  His defiant hands push mine away. He crosses his arms over his chest, protecting his most vulnerable area.

His body knows to protect itself.  He knows, on some intimate level, that his chest was broken open; that where they sewed it back together, he is at his most fragile.  It is human nature to protect the pieces of us that have been broken.

And yet.  And yet. If we do not allow others near those broken places, we risk becoming hard.  Unpliable. Inflexible.

I persist with massage, because I know, ultimately, it will help him continue to heal.  It will help his body move with less discomfort. And, it will make our relationship stronger, build our trust to an even greater degree.

And so it is for all of us, in our brokenness, when we let people near it.  What we think is untouchable, what we desperately want to protect, is actually what we should bravely allow our people to touch.

Heart Month – Day 22 – Milestone (And – Birthday)

It’s my birthday today.  Kiran didn’t get the memo.  I woke up to him having peed through his diaper overnight and had to strip the bed I just changed yesterday and start laundry (Best laid plans…I did so much laundry yesterday, in hopes of not having to on my birthday).

And then – oh, the turkey – every time I think we can just be back to normal.  We have never had issues with Kiran’s g-tube site.  His stoma has always looked really good – we have been lucky – until we sized up this last g-tube change.  Ever since, it has just looked kinda angry.  Just not as nice as usual.  A little red.  But this morning was new, and it sent this mama spiraling (even as my brain tried to tell my heart that it would be okay, we’ve handled everything so far, we will figure this out).  He developed a bump – a reddish bump – on one side of his stoma.

After talking with a fellow (former) tubie mama who I know dealt with granulation tissue – and after being on the phone with a GI nurse from Iowa City – I suspect it is granulation tissue.  I am hoping the school nurse is in today (She is very knowledgeable with g-tubes; we are so lucky) so she can actually lay eyes on the site and confirm.  A picture was sent to Iowa City, but a picture can only show so much.

This isn’t how I anticipated spending my birthday morning.  And yet, I still wouldn’t have it any other way.  I’m slightly less emotional, now that I’m actively doing something and on my way to finding answers.

It is so easy for me to spiral and succumb to fear and overwhelm.  This life is not for the faint of heart, and sometimes, this mama’s heart is so incredibly faint.

But.  Milestones?  Let me tell you about milestones.  I celebrate every single step forward, and I don’t keep track of any of them.  Long ago, I decided not to write down milestones.  It was too hard, and too … muddy.  Kiran would be able to do something for a time, and then he would regress because it became too hard due to his heart (pre-surgery).  And the rest were just too hard to pinpoint … and so far off from the “normal” timeline.  It just did my heart better to celebrate and get excited about every single one, while decidedly not trying to catalogue them.

Except one.  And anyone who has followed along might just remember the one milestone I have in my calendar on my phone.  March 8th, 2016: “Kiran laughs!”  It’s the only one that matters.

Heart Month – Day 21 – Strength

Until you have witnessed the strength, the determination, the sheer will to live, of a heart warrior … no words can help you understand.  These kids – babies, many – and those who grow to be older, the lucky ones – fight and fight and fight until there simply isn’t fight left in them.

That’s the part fear attaches itself to.  When will the fight get too hard, the battle too long?

I grieve so deeply about the strength Kiran must have, all he has had to endure, and he has had a relatively “easy” heart journey compared to so many.  I try not to compare, but there is such a thing as survivor’s guilt, here, just like there is such a thing as post-traumatic stress disorder.  We medical mamas have a lot more in common with soldiers than you might think.

I have written about this one instance so many times before, when I reflect on Kiran’s strength.  It brings me to tears every single time I think about it, even as my mama heart swells with pride at how strong and amazing my little man is.  When you get an EKG, they clip all these little alligator clips to the electrode pads (I would have called them electrode stickers, but a quick google search corrected me) they stick to your skin in order to do the test.  It has been awhile ago now – probably over a year ago – and I was watching Kiran’s face as he sat in my lap, and they were clipping these pads.  I caught a brief wince – sudden and swift, a look of pain – and then Kiran’s face went back to a neutral expression.  I looked to see what could have caused it – and the nurse had accidentally clipped his skin instead of the pad.  It was fixed immediately, as my heart broke for him.  Imagine: a tiny alligator clip pinching the skin on your chest.  Ouch.

He didn’t cry.  He barely even showed his pain.  It makes me wonder how much pain he endures that maybe I am unaware of – and it’s not as if I could take most of it away, anyway.

I wish a band-aid and a kiss was all we needed.

Heart Month – Day 20 – Fear

When I saw the topic for today, my brain immediately started singing this song by Blue October:

“‘Cause fear in itself
Will reel you in and spit you out
Over and over again
Believe in yourself
And you will walk
Now, fear in itself
Will use you up and break you down
Like you were never enough
Yeah, I used to fall, now I get back up”
It is so easy – so incredibly easy – to let fear swallow you whole.  The unknowns are the worst – the day Kiran was born, when we first brought him home from the hospital, our first emergency room visit, open heart surgery day, his MRI….
Getting the wheelchair, I feared how we would navigate the world.  Going into preschool, I feared he wouldn’t make any friends.
Fear knocks me down, knocks the wind out of me, constantly.  Even this illness he is still battling – that poor little cough of his – fear.  But the fear keeps me vigilant.  Checking his temperature, checking for retractions, checking for any signs or clues that things could be taking a turn for the worse.  Fear keeps me a fighter for him – fearing for his safety early on in the school year, we successfully advocated and got changes made to the school parking lot drop off process.
It has its place.  But the trick is the balance.  I can’t let it keep me down; I have to keep getting back up.