Kiran and I have been working on rolling a ball back and forth for awhile now.  Not in any intensive way, but I have been trying to teach him.  One of the days this week at PT, they worked on it with him as well.  This motivated me to be more intentional about practicing with him every day.  Today, he was REALLY starting to get it!  He rolled the ball to me several times, and for perhaps the first time ever, I really felt like I was playing a game with my son!

It filled me to overflowing.  He was so proud of himself, and we were both laughing and having a wonderful time.

For a moment, a flashback came to me, about the very first little boy I nannied full-time.  I remembered this being a game I loved to play with him … at around six months old.

And for some reason, I realized at that point: I have a choice right now.  I can choose to grieve and be sad it took Kiran this long to get the hang of rolling a ball.  Or I can choose celebration and be joyful that he is here, getting it now.

I am not always capable of choosing joy.  Many times, the sadness needs to have its space.  Today, however, I was able to celebrate.

The choice is always there.

I am going to keep it real. 

I have struggled a lot – especially in the first ten months of Kiran’s life – with one question. Who am I, if I am not Kiran’s mom?

This was a question I asked, with the knowledge I could lose him. I still could. No one knows what the future holds. This is true of a healthy child, but it is more in-your-face when your child has a serious medical issue. 

But tonight, I struggle with the same question from a different perspective.  I have held this so close to me for so long, and I am weary. I’m done. 

Kiran’s dad and I are in the middle of a divorce. 

Kiran and I moved in with my parents about a month ago. And on the nights and weekends his dad has Kiran with him (though so important, and I love watching the relationship the two are developing)… I. Feel. Lost. 

From the moment I conceived him, it was over for me. Right or wrong, he became the most important thing in my life. I needed to care for him and nurture him. Especially after we got the diagnosis … He. Is. My. World. 

So when I find myself without him, I am a little lost. It’s all still very new. I don’t like it. 

It’s important. 

This is a blog about Kiran and about my feelings around raising him, so all I will say is this: It is incredibly sad we are here, but we are trying our best to move forward with Kiran’s best interests in mind. We are trying hard to be an (unconventional) family. 

But I still ask, as I am sitting at my cousin’s wedding reception, alone, wishing Kiran was here….

Who am I, when he’s not here?  Who am I, when I am not fully engaged in being his mom…his nurse, his caregiver, his chauffeur, his therapist….?

I definitely feel lost. 

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!!!

 

 

Kiran has made some pretty remarkable progress in the last three weeks. This intensive physical therapy is no joke, and he continues to amaze me every week. 

After one week in the cage, he started holding himself up in the hands and knees position. For 30-40 seconds at a time (sometimes). This is incredible, because it is not something he has ever done before. He doesn’t like being in that position – or any position stomach-down – and works to get OUT of that position as quickly as possible. But now – he tolerates it. He is strong enough to hold himself up. 

After the second week in the cage, the length of time he will stand at the couch has increased immensely. Five seconds used to be good. And – I’m no good at remembering to time usually, much to the dismay of Kiran’s physical therapist – but I swear he will stand up for a minute at least!  (Again, sometimes. An enticing toy and non-tired boy have to be present for it to work).  

And the last session of our third week in the cage, the PT reduced the amount of assistance he was given during the standing portion of his therapy. And he rocked it. 

I am so thrilled we were given this opportunity for this therapy. It is such a fun and interesting session to be a part of (thank goodness, since it starts at 8 am 3 mornings a week!), and the progress just brings tears to my eyes. I couldn’t be more proud of how hard Kiran works and how much he is learning. 

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