First Heartiversary!

Happy Heartiversary, baby boy.  I know you don’t really understand the importance of today yet, but you will.  Oh, how my heart hopes you will.  I hope the years to come continue to be like this past year, at least as it pertains to your overall health and strength.  I hope we will be able to start telling you about your special heart and the story of your journey so far.

Today was just a normal Thursday.  We went to your intensive physical therapy first thing this morning (It was different because your nana joined us today!).  And then we drove around a bit (ok, through the Starbucks drive-thru), and I parked the car while you took a nap between therapy appointments.  I sat in the park parking lot, windows down, sipping my pumpkin spice americano…and I just thought “Wow, I am so thankful for the simplicity of this moment.”  And I was.  I am so thankful to not STILL be sitting in a waiting room, riding the rollercoaster of surgery day, clinging to my phone waiting for an update.  I am so thankful I got to spend the entire day with you, not worrying about you.  Not wondering if I would be so lucky to get to see you again.

Then we had feeding therapy.  I had to do some work errands (People have really rallied with these cheesecakes we are selling in honor of today!  It may have to be a tradition.)  And we stopped at the park.  For the briefest of moments, I felt that all-too-familiar pang of grief as I watched another little boy, about your age, run around and play.  But then I heard your sweet voice and saw your bigger-than-life smile, and I remembered you are right where you need to be on your journey.

We came home.  Let the dog out.  And just sat together.  Laid together.  Sang songs.  Had a snack (but not orally, you were just too tired).  And now, you are napping in your crib.  And I am just thinking – what a day.

I explained to your physical therapist today that I have a hard time separating food from celebrations.  It’s hard for me to know how to celebrate YOU, when food is ALWAYS involved in my celebrations (We all just love to eat!)  But then I realized: You don’t care.  You just want to be with me.  You just want to enjoy the people you love.  It’s ME that cares.  And I hope, selfishly, that the years to come will bring the ability to celebrate with you with food.  I hope you learn to enjoy food, and I hope you continue to develop the skills you need to eat safely by mouth.  But if you don’t, sweet boy, Mama will be okay.

I never want you to think that when I talk about the hard stuff – or when I talk about grieving – I NEVER want you to think that I would change a single thing.  I wouldn’t.

Not.  One.  Minute.

We are all – everyone who loves you – on this journey together.  None of us have navigated it flawlessly.  We are learning together.  You are teaching us far more than we could ever teach you.  I can’t wait to share this with you.  We will find our celebration traditions together.  We will – Lord willing – have many more heartiversaries to celebrate (though I naively hope we won’t add any other dates to that category).

I just can’t ever express how much you mean to me.  I hope you already know – and will continue to grow in your understanding – just how much I love you.  You are my precious warrior, but you are more than just your heart story.  It embodies so much of you, now, because it has been such a big part of your short little life.  But, dear one, you are Kiran.  You are strong and funny, sweet and ornery, easy-going and larger than life.  You are the best thing that has happened to me – and I doubt anything could ever top it.

Happy First Heartiversary!  One year – look at you go!!!

 

 

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