I cherish my child.  I love him.  I am thankful to be his mom, and I wouldn’t trade him for any other kid.  Still, sometimes, I find myself needing to grieve the child I always envisioned I would have.

I have always wanted to be a mom.  More than anything in the world, I feel it is my true calling.  I have always loved kids, and I gained a lot of experience with raising healthy kids during my time as a nanny.

I have never wanted to be a nurse.  I was never drawn to work as a nanny for family with children with special needs.  It always intimidated me.  Medical equipment intimidates me.  I have zero interest in being in the medical field in any way, shape, or form.

And yet.  Here I am.  The medical expert on my son.  I have been forced to learn and do far more than I ever wanted to.  It’s scary.  Especially when things are new and we are in a recovery period, like now, it’s terrifying for me.  I never know if I’m doing it right.  I never know if I will miss something big.  I never wanted to have to worry about this stuff.

It was not the desire of my heart.

But Kiran is.

So many things have changed because of him.  Because of who he is, because of his heart condition, because I love him differently than I’ve ever loved another being.

I always hated pacifiers.  I was never going to give my child one.  Or, if I did, I was going to wean them off early.  Now, I am thankful Kiran loves his pacifier.  It gives him the oral practice he needs to eventually take more food by mouth.  It is a comfort when we are in the hospital.  It is a reminder, while he is being pump-fed, that sucking produces fullness.

I always loved schedules.  I had all my nanny kids on eating and napping schedules within the first week of starting with a new family.  Kids thrive on schedules, but really, so do I.  It is impossible to have Kiran on a schedule.  With all of our many medical appointments and therapy sessions, there is just no way I could adhere to a strict schedule.  So I have learned to go with the flow with that.  We do our best to stick to a loose one.  I have had to let it go.

I always prided myself on helping kids meet or exceed their developmental goals.  Every kid is different, true, but I feel I was very good at progressing a child in that way.  It is so hard for me, sometimes, to remember Kiran is especially different.  We have to practice things in short spurts because he tires easily.  There are days we don’t practice at all.  He is seven months old but probably closer to 4 or 5 months developmentally.  That is hard on this overachieving, perfectionist mama.  It is hard to not feel it is a failure on my part (I never feel it is one for him!)

I have written about this so many times.  This is not how I pictured my life.  And sometimes, like today, I just need a moment to be sad.  I am trying to allow myself that freedom without guilt.  That, too, is difficult.  Because I wouldn’t trade the little man, not for anything.  And I just don’t know how to reconcile all of the emotions I feel.

I have found that being a mom of a medically fragile child means I will feel just about every emotion on the spectrum just about every single day. 

It never fails: anytime we have a new medical device or change in our schedule, I get overwhelmed. It takes me awhile to find my footing and gain confidence. It is why, while we were in the hospital, I jumped right in to start feeding with the g tube. I jumped right in and had the nurse talk me through cleaning the site and changing the dressing. 

Still, coming home from the hospital to the milk gone bad in the fridge, the mail piled up on the counter, the hospital stay laundry, the mountain of new medical papers to add to the mountain I will organize “someday”….It overwhelms me, especially as I am trying to get Kiran back on some semblance of a normal feeding schedule and figure out the nuances of this new feeding apparatus. 

But. In the midst of it all, I was so thankful today. We have been blessed with Kiran’s presence for seven months now! (Um, where did that last month go!?!!)  And we got to celebrate his life at home.  We had some fussiness today and one small vomit after a tube feeding, but it was really a beautiful day spent together as a family. 

And – he officially weighs just over 15 lbs now!!!  My big, handsome man. Not to mention, we now get to see both cheeks at once – no more tube in his nose; no more tape on his face!

Still (jumping all over the place; it gives you a taste of my “just about every emotion” concept) – At one point today, I found myself trying to console him on his bedroom floor, tears in my own eyes, telling him I wish he could be healthy. I wish he had a strong heart and could eat by mouth. I wish we didn’t have to figure out how to keep him comfortable with tube feeds. 

But then, I also found myself telling him that’s life, and life is going to be tough. I told him his mommy and daddy will be with him every step of the way – and that if I could, I’d take it all on for him – but, unfortunately, he is going to have to do most of the hard stuff. 

In other words, he gained some wisdom today. It comes with age. 

We are being discharged!!!

I am relieved and excited … And, as always, overwhelmed. 

Yesterday was a hard day, but ultimately, a good day of progress. Poor Kiran was so hungry all morning as we waited for the surgeon to give us the okay to start feedings. He had a lot to say, and it broke this mama’s heart that she couldn’t do anything until we got the green light. 

Feedings have been going pretty well. The nurse showed us how to do the first one, and I have been doing them ever since (Arif did his first at his 5 am feeding this morning, at my instruction, no nurse present!). That part is pretty easy and works pretty slick. We have been doing the feeds by gravity so far – and it goes in so much faster than the tiny NG tube – but Kiran does seem a little uncomfortable for 10 or 15 minutes after a feed so we may have to play with slowing it down, especially as we up the volume. 

We will be waiting on the green light again today to increase the volume – we have been sitting at 60 ml each feeding for the past several – only half his normal intake. He is still on fluids, too, and we will wean him off of those as his food volume increases. 

Today we will learn how to change the dressing around the g tube and take care of it during the healing process (the next two weeks). I am anxious about this part but plan to jump right in – it’s the only way to get comfortable with our new normal. I want to feel confident going home. 

And I desperately want to go home today. I don’t know yet how likely this is, but I am hopeful.  So ready to be out of the hospital setting!

Overall, this whole process could not be going more smoothly. Thank you to everyone for all the thoughts, prayers, encouragement, and visits. We feel it all and appreciate it greatly. 

Kiran is doing really well in recovery. He has definitely had some pain and discomfort – and he had one big bout of agitation that left this mama very nervous (heart rate at 230 – no thank you!), but he has been resting well for the last hour or so. 

We were just told we are being transferred to the regular pediatric floor and will continue our hospital stay there. This is fantastic news – I knew he was a brave little warrior 💙

Everything went really smoothly and as planned. We just spotted him being transported to his room, and he was already making his adorable little crying noises. Can’t wait to be in his room with him!

We are in the PICU for now, downtown Mercy. 

We fiiiinally got an update. 

Surgery is almost done, and the doctor will be coming to talk with us soon!!! ❤️

Kiran was just taken back for surgery. We made it through pre-op, and the surgery board says he’s being prepped now. 

This is the hard part. The waiting. 

My dear, sweet Kiran,

It is so easy to love you – and so scary. My heart is full; you have filled it with your smiles, your enthusiastic chatter, your urgent cries, your snuggles. Because of this – because I love you with all I am – I have woken up every day this week with anxiety squeezing my heart. 

Logically, everything will go smoothly tomorrow. You have proven how strong you are already, by being discharged from a second case cardiac cath on the same day.  You don’t mess around. You are one tough little fighter. 

But. 

It’s that but that scares me. It is all those what ifs swirling around in my mind that make me take extra time to rock with you this week. That make me pause and hold you tighter every chance I get. 

I never want you to doubt how much you are loved. I never want my fear to keep you from living your little life at its fullest capacity. 

I have to come back to your theme song, chosen in the womb:

“Give em hell, turn their heads; gonna live life til we’re dead. Give me scars, give me pain; then they’ll say to me (say to me, say to me):

THERE GOES THE FIGHTER”

You are a beautiful kid, and your mama loves you tremendously. 💙