They say it takes a village.

I don’t know who gave them the authority to say such things so nonchalantly. As if it isn’t difficult to find, cultivate, and be a village with those around you.

Capacities are limited. Everyone has difficulties in their lives. It takes great vulnerability to ask for help. Rejection cuts deeper when you open yourself up to the possibility of more.

But it does take a village.

That village ebbs and flows. The people who choose to walk alongside you may change as every season of your life unfolds. Some may surprise you immensely, and you are humbled. And so incredibly grateful.

Pour into your village. Give of yourself even when you aren’t sure you’ll get anything back.

Remember that everyone’s load is heavy, and we are all just doing the best we can.

I am not ready for you to be this heavy.

I wish I could carry you forever.

I am not ready for more equipment. Insurance covered a hydraulic hoyer lift for you, and we received it a few months ago. We got a brief tutorial on how to use it. It has been sitting in the corner of your bedroom, unused, ever since. Part of the reason is we have to re-think and re-arrange the set-up of your bedroom before there is space for it to be stored in an accessible, ready-to-use spot. The bigger part of it is I am not ready. I don’t like the idea of it. I don’t want to need it.

The van. oof. This van modification. I have never had more anxiety over something you have needed since open heart surgery in 2016. I am struggling with trusting the process, I am struggling believing that it will all work out, I am struggling with the ridiculous expense. I hate asking for help. I am beyond uncomfortable with the gofundme and the news story. It all makes me want to pull the covers over my head and come out when I no longer feel so vulnerable and exposed. If ever you wondered if I’d really do anything for you, I hope this evidence is sufficient.

I don’t want to wish to rewind your life, because I am so thankful you are here and thriving at almost nine years old. But a part of me wants to go back to when you were small, when the day-to-day was just a little easier.

But was it? I struggled back then with things that are easy and commonplace now. I think I just need to accept that I will always struggle with change and the unknown and limbo, and our life will always have an added level of difficulty to it.

And an added level of joy.

Because that’s it, isn’t it? It’s the yin and yang of the life we live.

I’m overwhelmed and emotional.

Imagine that.

Exhausted? She’s a permanent resident.

I sometimes gaslight myself and wonder why in the world I am always feeling these things. And then I realize:

It’s the vacation bible school “student success plan” I have to fill out, to ensure Kiran’s needs can be met and they will have a one-on-one volunteer to help him successfully experience what most parents can just roll up and push their kids out of their vehicle to experience.

It’s the assignment I thought I would be able to knock out this morning during the 3 hours of respite care … that I quickly realized was a four-parter, and I only got through one part successfully before I couldn’t push my brain any further.

It’s the waiting at the pharmacy for the pharmacist to verify the dosage of amoxicillin because it appears to be too high, but actually we just have to give one dose before visiting the dentist every six months. And then waiting for her to mix it, because it has to go through the g-tube. I seriously had to hold back tears standing at the pharmacy counter, waiting – and why? I don’t know – I don’t get to choose when the emotions crash into me.

It’s the constant mental effort I have to put into grad school classes, paired with the constant physical, mental, and emotional effort I put into caregiving. It’s all the extras that add up, that feel unfair, that make me sometimes want to shout and scream and stomp my feet.

ENOUGH! – sometimes, too much –

It’s the big, looming changes before me that I have to work toward and wrap my head around and navigate…and change for me is always an exhausting and terrifying presence.

It’s the bravery and vulnerability it takes just to move in this world as a human.

It has been a very long day, and I am exhausted and processing.

Kiran is such an awesome patient. I am always so proud of him and amazed at his peacefulness and bravery. I know this has been his life, and he knows nothing different, but he really is an amazing kid.

The news I will share – the biggest news of the day – is the boy’s heart. First, the good: It is not yet time for an intervention. Now, the bad: It likely will be within the next year.

The pressures we are watching through his valve have increased. Nine months ago, they were around 48, and today, they were 58. Mid-60s indicates time for intervention, so he seems to be quickly moving there. However, his right ventricle still appears normal size, so it’s not working too hard pumping the blood through. Thats the other piece of what we are watching.

Dr R wants to see him back in 6 months (9 months ago, he was good with a year; I felt more comfortable with a sooner check-in), so I know we are more closely monitoring heart function.

It is still most likely that the intervention needed will be ballooning (and potential stent placement) done in the cath lab. This should buy us more time before his next open heart surgery is necessary.

I am thankful we didn’t have to schedule a cath procedure today, but I was not expecting that large of a pressure increase.

The time is approaching, but it’s not now.

We haven’t made the trip to Iowa City since February. I think that’s why my anxiety is ramping up in anticipation for tomorrow’s big day of appointments. When it becomes routine and you’re just trucking along, going to appointments regularly, you think about it less.

Tomorrow feels big. I am hoping that is not a premonition, especially as it relates to Kiran’s heart. My hope is that we see continued stability there, with no need for an intervention anytime soon.

I have questions for his gastroenterologist which feel life-altering. I tend to have to hear about something a few times and gain a different perspective on it before I’m really willing to consider change. This revolves around his stooling, and I have decided I need to be more protective of his privacy in this area as he gets older, so I may not share as much openly here as I once did.

And genetics. I heard again from his genetic doctor today, and they want ME to also do the skin punch biopsy (Yay….). I read through the ten page consent form for the research study today, and I am ready to move forward with my consent for Kiran to participate (his dad still needs to weigh in but last I heard, it sounds like he is consenting as well). I also let her know that if we are, in fact, moving forward with Kiran, I will definitely participate as well. As I am typing this, I am just now realizing that means I, too, have to decide if I want any secondary information about genetic makeup that could cause disease in the future.

Why is it a harder decision when it’s me versus Kiran? I think I am a much worse patient than I am caregiver.

At any rate, I don’t anticipate much sleep tonight, and my alarm is going off at an atrocious hour. We have to be on the road by 5:30 am, and we likely won’t get home until 5:00 pm. I know the day in and of itself will be exhausting – they always are – but I have my documents in order and my lists of questions at the ready, meals are pulled, backpack packed. I am as prepared as I can be physically; I just wish I knew how to better prepare myself mentally and emotionally.

The unknown is never easy.

I will do my best to update the important news of the day on the car ride home – as per usual, my dad is acting as chauffeur – but consider holding us up tomorrow, in whatever way you choose. We accept all currencies of positivity sent our way.

As we pulled into your last day of second grade, this song happened to shuffle on: You Were Born by Cloud Cult. It is one of my songs for you.

“You were born into a strange world.
Like a candle, you were meant to share the fire.
I don’t know where we come from, and I don’t know where we go.
But my arms were made to hold you, so I will never let you go.
Cuz you were born to change this life.
You were born to chase the light.
You were born…”

Like a candle, you were meant to share the fire. Kiran, you shine brighter than anyone I’ve ever known. I’m so glad we made it through another year, and I can’t wait for an awesome summer with you!

Turns out it sounds worse than it is. Received an unexpected communication from Kiran’s genetic doctor yesterday regarding his upcoming appointment next week.

First, the cool stuff: There has been another published research paper on RAB11B, bringing the total of kids with some variant of this genetic disorder to 13 in the research! Kiran’s variant is the most common among the 13. There are still no kids reporting congenital heart defects.

So the question his genetic doctor and the doctor who runs the research at the U of I for undiagnosed diseases have is this: are his congenital heart defects part of RAB11B or does he possibly have a second rare disease/disorder that has yet to be identified?

So they want to do a skin punch biopsy, which you shouldn’t Google. It is actually just the size of an end of a pen, only uses topical anesthesia, typically doesn’t hurt at all, and will only take a couple days to heal (no stitches involved)! They are going to grow skin cells using his and extract DNA, RNA, and protein cells, in order to get more information on the non-coding portions of his genes. If I’m remembering and understanding the conversation correctly (I’m away from my notes). So it allows whole genome sequencing, which gives more information than the whole exome sequencing previously done did. The goal will be to create stem cells and manipulate them into neuronal cells and heart muscle cells, allowing them to potentially determine what is causing (in his complex genetic makeup) his brain and heart to develop the way they did. And eventually, way down the line, it could potentially provide information for treatment.

What I find most cool about it all is how unique Kiran is and how important his piece to the RAB11B puzzle is. They are actively looking at his case and writing up his information to hopefully be published, especially if this research can provide more answers.

Of course when you dig this deeply into someone’s genetic makeup, you have to think about big questions, like: If they find the material that leads to cancer in adulthood, would we want that information or not? So there is still a lot to think about before next week.

When dropping Kiran off at school today, I learned that his elementary school is renovating their playground over the summer. But. They are not changing the surface – it will still be wood chips.

How aggravating that money will be spent to upgrade equipment but the bare minimum won’t be done to ensure all students have access to play on that equipment!

So this morning, two things:

1. I am working on forgiving myself for not having the capacity to have learned this information sooner, when I could have at least advocated and tried to make a difference. I am sure there was some sort of communication hidden somewhere, likely in a school board meeting agenda.
2. I am going to make it a priority next school year to attend as many school board meetings as I can – honoring my capacity as I finish up my last year of grad school – so I can stay involved and be in the know and advocate for Kiran more fully.

Sometimes I envy the moms who can stay in their vehicle at school drop off and pick up. Safe from the scrutiny of others because let’s face it: Sometimes, we are a mess.

Sometimes our hair didn’t get brushed because their hair and teeth did. Sometimes we can’t remember the last time we even washed our hair.

Sometimes our clothes don’t match, or they’re the ones we’ve worn all week to drop off in the mornings. Sometimes our legs are unshaven; our toenails unpainted.

But it’s because their clothes are clean, and they have everything in their backpack they need for today.

Sometimes I envy the moms that don’t have to visibly carry it all, parading right in front of the eyes of others who might have it more put together that day.

Sometimes, I hope the mom who needs to see that she’s not alone sees me. In all my mess.