Heart Month – Day 19 – Hope

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.

Heart Month – Days 16, 17, 18 – Heart Grandma, Heart Grandpa, Support

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.

 

Heart Month – Day 15 – Siblings

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.

Heart Month – Day 14 – Love

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.

Heart Month – Days 12 and 13 – Doctors and Nurses

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.

Heart Month – Day 11 – Knowledge

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.

 

 

Heart Month – Day 10 – Gone Too Soon

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.

 

Heart Month – Day 9 – Heart Dad

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.

Heart Month – Day 8 – Heart Mom

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.