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.

Everything I dreamed about as a little girl looks nothing like the life I have before me

But that’s the thing about dreams: They grow and stretch along with us

The imaginings of a child whose bubble had not yet burst, who had not yet been touched by darkness and grief

Could never be of the beauty this life holds for me, now

Because it’s true, what they say

The joy is so much more vibrant, the light much brighter

Because the darkness has swallowed you whole before

So I look at my life; I hug my child tight

And the shit that persistently sprays all over my world

Becomes easier to wash away

Do you know what I can’t stop thinking about? The nurse I spoke to on the phone yesterday that – a bit rude with her tone, to be honest – asked me if my son “was there” when I explained it was hard to tell if his eye is itchy because he tends to touch them frequently.

It is obvious to me this nurse didn’t bother to take a quick peek at his chart before talking with me, and this was the third time I spoke with her. Maybe it isn’t customary – maybe there isn’t enough time in the day? – but if you aren’t going to look for the big things in my son’s medical chart, maybe take a pause and think about why I’m wording things the way I am. Assume competence in me, too.

I calmly explained that he is non-speaking and doesn’t yet have a way to tell me things like this. So she sent the prescription in for us. And I haven’t been able to get the conversation out of my head since.

“Well – is he there?!”

Sometimes, it doesn’t take much to cause another tiny crack in my mama’s heart. Patience and kindness sure can go a long way.