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.

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.

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.

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.

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

Hope is a fragile thing, easily squashed underneath fear, reality, heartache.  There are days it is hard to find the sliver of light, the piece of hope, but it is always there.  And I do everything I can to not only find it, but nurture it.

Currently finding myself in a darker space, today, after a couple of rough weeks – and today being my brother’s birthday, and his absence ever a squasher of hope – I am finding it hard to write about this topic today.

So rather than focusing on hope as a noun, I will focus on hope as a verb.

What I hope for Kiran has changed in a lot of ways as he has grown, as we have learned more about who he is and how he is developing.  But some things will never change.  My biggest hope for Kiran is that he will know he is loved.  I hope he has a life filled with love and joy and kindness.  I hope he never loses his ability to laugh easily and often.  I hope he continues to grow and learn at his own pace and be the best Kiran he can possibly be.

I hope I can be the mother he needs, the caregiver he needs, the support he needs.  I hope that even on my tiredest, hardest, most hope-squashing days, I can be who he needs me to be.

Best laid plans.  As soon as Kiran’s dad felt better and took Kiran for the weekend, my body let down, and his illness let itself in.  I have been pretty down for the count most of the weekend and continue to fight this thing.  Yuck.

That being said, perfect topics.  Yet again. And they all fit well together, so I can catch up with one entry.

Kiran’s nana and papa, and the support they provide Kiran and me, is invaluable.  I could not do this without them.  Simple as that.

When Kiran was first born, they came over all the time.  I think Nana was over washing bottles and syringes about every night for months.  Papa was always on board for a snuggle or a diaper change.  And they always brought food.

Nana is the best hospital companion, though we haven’t had to use her skills too often, thank goodness.  She doesn’t mind sitting with me in his hospital room, day in and day out, doing word searches or talking or watching tv or grabbing food for me.

Papa is the best at making stuff to make our lives easier – or more fun.  From the wheelchair ramp he built just two days after Kiran got his wheelchair, making getting it in and out of the house so much easier on my back and my sanity, to the amazing train Halloween costume I envisioned that he made fit perfectly over Kiran’s wheelchair.

They both know the majority of Kiran’s daily care.  They can both feed him, orally and through his g-tube.  They know how to put his brace on at night.  And they are the best at snuggling and celebrating and loving him, just as he is.

Nana and Kiran love watching sports and cheering for their favorite teams together.

Papa and Kiran love playing their version of patty-cake which is silly and crazy and involves all kinds of tickles.

Support.  Without hesitation, when Kiran and I needed somewhere to live, they opened their home to us.  Their guest room became Kiran’s bedroom.  Papa’s Harley lounge became my makeshift bedroom.  Their kitchen cabinets became home to a million syringes and baby food pouches.  Their dining room table overflowing with Kiran’s chewy tubes; his wheelchair (also his feeding chair) always parked in the middle of everything.  Their living area upstairs became storage for a million toys and standers and gait trainers.  All kids come with a lot of stuff; Kiran comes with a lot more.

It isn’t picture perfect all the time, but I am thankful all the time.  I know how blessed Kiran and I are to have loving and supportive family like Nana and Papa.  I know they must go through their cycles of grief at times too – just like me, they had visions and dreams of what having grandchildren would be like – but they are so proud of Kiran.  They love him so well, and they love him for who he is and right where he’s at.  And they love me, too – Nana is especially good, lately, at reminding me I am a good mom, right when I need to hear it.  And Papa is especially good, lately, at seeing when I need a break and stepping in at dinner time for a g-tube meal.

We couldn’t have asked for a better Heart Nana and Heart Papa; we couldn’t have dreamed up a better daily support system.  We are lucky.

Kiran will never be blessed with biological siblings, but I don’t feel he is lacking in the area of sibling-like love.  There are two special young women who have become so close with Kiran, they long ago started referring to him as their “little brother” … and it warms my heart every time.

It is a testament to family – sometimes – having nothing to do with blood.  Or even marriage.  Family is a special bond that moves beyond friendship.

These girls – G and A – I know would do everything possible to protect Kiran.  They spread awareness for congenital heart defects, they tell his story, they pray for him.  They would advocate for him and fight for him.  Heck, they both have his heartbeat tattooed on their bodies.  Their love is fierce, and he is lucky to have them as his older sisters.

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.