I continue to be amazed at how easy-going and relaxed Kiran is during appointments and procedures. We have been very lucky with how stable he has been; I can’t even recall the last time we had to spend the night in the hospital. We have had same-day procedures (his salivary gland removal a couple years back, for instance), but I’m not sure we’ve been hospitalized since his open heart surgery (Is that possible?! I should really read back and check)

Kiran’s body – his heart – is also really blessing us with a lot of time. Everyone was impressed with the fact he hadn’t even been to the cath lab since 2017, and that his conduit has been in place for almost ten years without requiring an intervention (until now, of course). As I mentioned, we also lucked out that the simplest solution was the one that worked. They were able to successfully balloon the conduit, making it bigger to provide more sufficient bloodflow. What happens over time is calcium builds up inside the conduit, which narrows the blood’s pathway. This increases the pressure which can cause the heart (in Kiran’s case, the right ventricle) to work harder. This pressure, in addition to other pointers (like thickening of the wall of the right ventricle, which would indicate the muscle is working harder and “bulking up”) is what we have been monitoring at his regular cardiac appointments.

These ballooning procedures typically provide relief for one to three years. The pediatric cardiology interventionist, Dr. S., was outstanding. He explained everything very well and was really good at addressing the risks and concerns while also being very encouraging and positive. We all felt like Kiran was in excellent hands, and he was. Dr. S. talked with Kiran’s cardiologist, Dr. R. following the procedure, and they agreed to a tentative plan moving forward.

The goal has always been to prolong the need for the next open heart surgery. This will be required when we have to replace the conduit, because that cannot be done in the cath lab (yet). I am pretty sure when we were first discussing Kiran’s heart journey (when he was an infant), valves also could not be replaced in the cath lab. That has since changed; it was one of the scenarios that could have occurred on Thursday if deemed necessary.

Anyway, we now hopefully have one to three years of heart stability. When the pressures and other indicators point to the need for the next intervention, we will plan to go into the cath lab with the intention of placing a stent and replacing the valve. Ideally, Kiran would grow to be 10-15 pounds heavier before this is necessary, as that makes valve placement less risky. As long as the conduit continues to hold up, this intervention would likely get Kiran into his adult body before requiring his next open heart surgery to replace the conduit.

Although this timeframe is tighter than I would like, I recognize we were very lucky to make it almost ten years between heart interventions. And it’s good for my brain to have a more solid plan in place. I like knowing what to expect, and I feel very good about Kiran’s cardiac team.

We got home yesterday afternoon. Kiran continues to recover well. He took a nap, got some good nutrition in him, got out what his body needed to get out, and slept from 7:00 pm to after 8:00 am this morning. We are resting today, hydrating, addressing some after-anesthesia needs, and getting in lots of snuggles. He is in good spirits and doesn’t seem to be in any pain today.

Prayers were answered with this situation, and my heart feels much more at peace about Kiran’s continued heart journey. This kid is astounding, and he is truly my hero.

The waiting is the hardest part. Thankfully, that part is *almost* over for me, as I get to help Kiran stay still during his “flat time” – the time after the cath procedure (about an hour) during which he is still mildly sedated so as to keep still and lie flat.

Kiran is in the recovery area. They took him back for the cath lab procedure just before 10 am this morning, and we just wrapped up our consult with the pediatric cardiology interventionist. He was extremely thorough, kind, and explained everything very well (at least to me, as I have a pretty solid background in Kiran’s heart ten years in).

They ballooned the conduit, and it worked well enough that it’s the only intervention they deemed necessary. They still want to keep him overnight to monitor a slight, self-contained injury to the conduit and a vein that didn’t love having the items poked through it.

The conduit is showing some “I wouldn’t call that mild” leakage, meaning the valve is allowing blood to flow backwards back into the right ventricle. However, the right ventricle’s size does not appear significantly impacted by the amount yet. And apparently, with the right ventricle, we like leakage more than obstructions.

So they were able to balloon the conduit for better flow and lower pressures. This will buy us more time for the next heart intervention. With any luck at all, the conduit will stay performing well, Kiran will gain 10-15 more pounds, and we will opt to place a stent and valve in the cath lab in the next year or two (or three or four … I’d like it to be a longer timeline).

The goal and hope is still for only one more open heart surgery, when the conduit needs replaced.

Hoping to be called back to my boy soon so I’m gonna leave it there for now. What a boy!

Kiran and I went to the summer flicks movie at the movie theater yesterday. We watched DogMan. We’ve been reading several of the books and have enjoyed them. Kiran has actually seen the movie at home, recently, but going to the theater in the summer is one of the things we enjoy doing together.

In situations like this (movie theater, church, theater performance, etc), I do my best to manage Kiran’s loud vocalizations. He vocalizes excitedly, and it can be somewhat often and prolonged. I teeter-totter back-and-forth on the fact he is absolutely allowed to exist in these spaces and be who he is, but I also try to teach him when it’s appropriate to be loud and when we need to be quiet and listen. It’s an ongoing education, but we do actively work on it.

He was rather excited for periods of this movie, and he had some loud vocalizations. We were whispering about it, and I was doing some of the things I have found helpful (let him stand for a little bit, apply pressure on his chest, let him sit in my lap).

And then, for the first time I have ever experienced (though I am sure it is not the first time it has happened), a child made fun of my son. After two vocalizations, I heard a boy somewhere in the theater mimic the noises Kiran had made.

And it broke my heart.

It only happened twice – and Kiran definitely had multiple other things to say after it happened – so I can only assume the adult with the child shut it down quickly. I am thankful for that.

I am also thankful – always – that these things don’t faze Kiran. I honestly don’t think he processes or understands that someone is making fun of him. If anything, he’d probably think this child was playing and wanted to chat. And this sweet, innocent boy would just try to make friends.

So, I get the privilege and honor of carrying this heartbreak. And I am reminded of why it’s so important to continue being out in the community, even when it’s not easy.

I want to take my son to the park. I want to sit on a park bench, iced coffee in hand. I want to watch him play.

And tonight, I sat with that for a moment. I sat with the grief, the sadness, the loss of “typical” motherhood.

If I took Kiran to the park and sat on a park bench with an iced coffee in hand, he would be sitting in his wheelchair next to me.

He requires help to play at the park. It’s hands on, pretty much 100% of the day.

Then I realized the truth I keep having to learn: I can’t do this alone. I need to ask for help. I need community.

Yes, I have amazing respite care providers, a nana and papa, a partner who would play with him. But also – also –

I have friends with kids. Kids that are old enough to help Kiran play with supervision, but not too old to play at the park.

So – who wants a playdate? I’m going to start reaching out about this. It is going to be very awkward and uncomfortable for me. But Kiran deserves to play at the park without it always being his mama helping. And I deserve to be able to sit back and enjoy watching him play.

Is our life always going to take creative solutions and extra steps and tiring logistical planning? Sure.

But is it possible? Will it be worth it? Always.

Last week was a hard week. Work was busy, overwhelming, exhausting, with so many responsibilities and scheduling becoming a full-time job as we approach the end of the school year. Plans I thought I had in place and was working firmly toward in terms of Kiran’s respite help either didn’t come to fruition or completely fell apart, and I found myself starting from scratch. Again. And other seemingly large things on the horizon I am not willing to disclose at this time involving Kiran’s future stability and care came to my attention….

I am not okay. I am actually barely holding it together with everything I am currently carrying. I feel myself on the verge of a breakdown, and I am using every tool I have at my disposal to keep putting one foot in front of the other.

One bright light holding me together is realizing how many people care about Kiran and our family. Since sharing about his upcoming heart procedure and once again selling wristbands to support our emotional and financial needs, so many have responded in generous, heartfelt ways. It’s often the people you don’t expect that rally behind you in major, humbling ways.

I keep reminding myself all the truths I have learned along the way:

This, too, shall pass.

You have a 100% survival rate for all the hard days.

You will figure this out, and the path forward will be the one you’re meant to walk.

Kiran will always be the priority, and you will always make the best choices possible for him.

You have to let people help you. You have to ask for help, as best as you can. You are not meant to carry this alone.

Remember: It’s a long road ahead, but we journey together.

This is the best way I can describe it to you: There are days I don’t want to be perceived.

If you are a person who has anxiety or are introverted, I suspect you might understand what I mean by this.

Today was one of those days. Mostly because I found myself tearing up constantly, with minor inconveniences, with my thoughts and fears, just in general. There are days I just get weepy, and today was one of them.

But Kiran needs new glasses. And Eric is working all day.

I teared up asking where the elevator was in JCPenney. I got frustrated when I realized I should have made sure LensCrafters was still located inside the mall where we got his previous pair of glasses (they are not). I teared up walking by the Children’s Museum the second time, as curious young eyes were staring at Kiran as we went past.

I teared up thinking about how most parents will never know all the extra steps it takes to get Kiran in and out of our vehicle. Thinking about how I just spent over $80 on five pairs of seamless socks that got the best reviews for preventing skin irritation for Kiran’s new orthotics (Insurance covered 2 pairs of these socks – 2 – he is supposed to wear them 8-12 hours a day, every day).

Glasses got ordered. We went with what we know works, just with updated prescription and a different color to spice things up a bit. I got overwhelmed when I realized his prescription changed so much that with these new glasses, much like the new orthotics, we will need to ease in and do diligent detective work to make sure he is okay with the change. We will have 30 days to make sure the prescription is right and not too much for him.

Then I thought we’d stop over at our favorite consignment shop for Kiran’s clothes but couldn’t find a single accessible spot with the extra aisle space.

So we drove home, where I got frustrated and teared up several times putting his orthotics on for the first time – and trying to figure out if his new bigger shoes would actually fit over them.

I have a lot of days where these daily situations are just that – daily situations. They are our life, and I am just living it. But it’s been a week – a very overwhelming, stressful week at work – and when you throw in changes to our daily routine at home, well….

Have I ever mentioned how much I hate change? It is really hard. Really hard.

So I’ve teared up a lot today. Cried a little. And just kept putting one foot in front of the other.

Because what I always tell Kiran – and the kids I work with – is that we can do hard things.

Even when it sucks. Even when we cry. Even when we really don’t wanna.

I have been reflecting on this since someone said it to me on Friday night. Paraphrasing: “I read your blog … I love how you always make him seem powerful; he never seems vulnerable”

I honestly have never thought about that before. I write very honestly. Most of the time, when I write, it is because I am processing or feeling something that I simply cannot contain. Writing is my therapy. It is my stress relief. It is how I purge my brain or my heart of the whirling tornado they often live in.

What does that mean?

It means that I truly see Kiran as powerful.

It makes sense. I have always been in awe of his strength. His joy in the face of – everything.

When I really examine his life, though, here is the truth: He IS vulnerable. He is dependent on those around him to care for him, to assist and direct him in all “activities of daily living”. It is why it is so important to have a strong team around him. It’s why I have fired medical professionals, why I am particular about respite care providers, why I am so thankful for his core academic team.

I think my writing doesn’t always convey that because I know my intentions with him are to care for him well. He is my priority. Our lives are molded to care for his needs. I try to give him as much say in his life as is possible. I want him to be as independent as it makes sense for him to be.

I also firmly believe that our dependency on others – our vulnerability – makes us powerful. We are stronger together.

It was really one of my most favorite things anyone has ever said to me, but man, it made me think.

I don’t get to choose when it happens. Poor Eric came home this morning from running errands to Kiran and me snuggling in the chair, tears streaming down my face.

I can’t even answer the question “what’s wrong?”

Because it’s nothing. And everything.

We have had massive changes in our lives this past year. Not only have I started working full-time for the first time in Kiran’s life, but Kiran has also been living with us full-time since mid-October.

Since Kiran was two years old, I have had 48 hours every-other-weekend to be someone more than mom. I have had that built-in caregiving break. I have been able to meet up with friends without having to schedule care, clean the house without feeling guilty that he’s bored, run errands without the extra 82 steps required when he is along for the ride. I have been able to get out of town with Eric or with friends and just relax.

It has been a massive adjustment. It is becoming our new normal, but I am still figuring out how to make sure I am okay mentally, emotionally, and physically.

I was reminded today that this is a marathon and not a sprint. I have to not only continue to find the joy in even the hardest caregiving moments, but also acknowledge the hard that it all is. Breaks are needed, and we have to get more creative in how we make sure we *both* get them. Eric has taken on a lot more caregiving this year, too.

And the burnout is real.

Today, I spiraled because I’m scared. And overwhelmed. This is the first time I have ever been a mama to a disabled ten-year-old. And there are always the new, hard things we have to figure out. And I was feeling like I don’t know how I’m going to do this forever.

There is good news here. I know how I’m going to do this today. And it’s gonna be a good one. And the rest, we will figure out as it comes.

We always do.

It’s my birthday week. It’s a thing in our family – kinda. It’s just a week where we try to make each day just a little special, different. We don’t worry (as much) about spending the money to order a meal in or have a fancy coffee. It’s just celebratory and fun.

Tonight, despite having our regular Wednesday date night respite care scheduled, I hadn’t made any specific plans. Until I stopped to take my 10 minute lunch break just before noon. Then, suddenly, I remembered Clyde’s Fine Diner has oysters and half off bottles of wine on Wednesday nights. Eric has been craving oysters for awhile – and hey, I love oysters too. I started getting really excited for the evening!

As best laid plans do, not even an hour later I heard from our provider (I am not mad or disappointed or anything about this, by the way) that she is sick today. Really unwell. She needs to rest and take care of herself and mend, of course. Plus, we don’t want that garbage in our house (Kiran and I are both exposed to it on the daily at our schools; we don’t need extra).

Still, there is disappointment. So we find ourselves in a typical evening routine. As I’m showering Kiran, trying to not feel the drudgery of the task, I remember the acoustics in his bathroom are perfect for a one-woman concert. And no one appreciates my singing like Kiran. He even joins in sometimes.

So, we make it fun. We make it special. Eric especially stepped up, as he is currently in the kitchen making me some fancy swordfish dish and opening a bottle of red for us to sip on with it.

It’s really not so disappointing, having an extra night at home with my family. Yes, I am doing laundry. Yes, we had to handle the daily caregiving tasks (my mom washed the syringes before she left and Eric blended/filled them for tomorrow, thank goodness!). Oh well. It’s cozy, the couch is comfy, the boy is already happily in bed and likely sleeping.

It is well with my soul.