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.

On our way home from Iowa City after a morning cardiology appointment for Kiran.

First of all, no wonder he’s feeling heavier these days! He’s 70 pounds! This is great news, as it’s right at the average for his age. This means we are on the right track with his diet/calories, and he’s growing as he should be.

Heart is stable with no significant changes from six months ago. The plan remains the same – Kiran will go to the cath lab in June. Decisions will be made on the spot when that happens but likely some ballooning, perhaps placing a stent, maybe even a stent with a valve. He will need to stay overnight in the hospital since he will be intubated for the cath procedure.

Kiran hasn’t been in the cath lab since he was two years old. We have been so incredibly lucky! Dr R is hopeful that the interventions they decide on in June will give us another five years or so which will lessen the amount of significant interventions needed in his life.

Kiran was a star patient as usual, with the echo and EKG technicians both commenting on how easy he made their jobs.

All in all, though not the way I would have chosen to spend my morning (6 months ago Holly made bad decisions), it went exactly as I had hoped.

And man, I am one lucky mama. He really does make the job easy.

I remember her, bursting into tears, unable to remember the French term the doctor had just used to describe the condition of her unborn baby’s heart.

I remember her, painstakingly measuring portions of food and taking multiple walks a day, because gestational diabetes was something she could control. A way to keep the baby safe.

I remember her, on those daily walks, preparing her mind and heart for a devastating loss because it was the only way she knew to prepare for what could be in store.

I remember her, feeling overwhelmed and alone in the early days, filling out piles of paperwork, calling countless doctors, navigating insurance and medical bills, learning new terminology, wondering all the while if her baby boy’s heart was the only concern.

I remember her.

She was exhausted in a way that’s hard to describe, a way that hasn’t completely dissipated, even now. She was determined to do right by her boy every step of the way, even when those steps felt like giant mountains blocking her path. She was resilient, armed with love, coffee, and late night google sessions.

I remember her, the day she had to let go, put her boy’s life in the hands of a surgeon, unsure if it would be the last time she’d ever see him.

I didn’t know, that first year of Kiran’s life, if we would make it to his first birthday. I didn’t dare dream we would ever make it to today. I just got to tuck in my nine year old boy for the last time. Tomorrow morning, he will wake up, and he will be in double digits.

I am bursting with joy and more emotional than I realized I would be.

Because I remember her. I am her. It’s been a rough journey but one I would never stray from. I can’t believe I’m about to have a ten year old, and I can’t believe how incredibly blessed I am to have him here with me.

I say it all the time, and I mean it: He’s the best human I know. He’s my favorite. I envy his unabashed joy and peace and go-with-the-flow attitude. I’m grateful that who he is makes my job as his mom so wonderful.

“I could never count all the ways that you change me, baby. Every day the sky is a deeper shade of blue when I’m with you.” (JJ Heller, When I’m With You)