My Big Brother

Posted on July 17, 2024 by My Bleeding Ink

I have been called many things. “A big sally.” “Sap.” Too emotional. Been accused of thinking way too much. Of worrying too much. Of being too touchy feely. Of being essentially a big wuss. And I’ve been called all this stuff and accused of all this stuff mostly by the other guy in these pictures.

He’s been making these faces for literal years 😊

My big brother.

The first person, who wasn’t my parents, who stood up for me. My first protector, my first tormentor (but if anybody else so much as said a harsh word to me when we were kids, he put them in their place!)

And I’ve been “sneak attack” hugging him for just as many years


The guy who stood behind me and would grab the back of my neck as we walked, just to make sure I wouldn’t get lost in the sea of people, or fall down because of my crappy sense of balance. The guy who admitted once, and only once, how hard it was to see me in and out of hospitals and surgeries and talked about just how painful it was seeing it back in the day. (And I’m pretty sure there was alcohol involved in that confession.🤷‍♂️)

And even tho our hair keeps getting grayer and grayer…

But that’s him. Not a sap. Not emotional. Not a wuss. Not touchy feely and huggy. So my polar opposite. 😁 Every time I attack him with hugs, he makes faces like in all these pictures, like he just hates it and is trying to find somewhere else to be!

I’ll never stop because there’s something very comforting in knowing….

And dammit if he ain’t a great guy. He’s the guy who called my mom pretty much every day when, in 2013, I was once again going through shunt surgeries for the first time since 1996. Two surgeries in 6 weeks. Always calling, always checking in, showed up too, but called a lot. Or when I slipped and broke my knee a few years ago, or when I slipped and fractured vertebrae in my back last year. (I slip a lot, the older I get apparently! 😂😂😂….🫤)

that I’m pretty sure he secretly
would miss it…

But that’s him. He’s a hard working father, the guy works his ass off to provide for his family. He’s a good husband, a kind and decent man at heart. And a wonderful, gulp, grandpa!!! 😳😳😳

if I ever stopped.

And he’s the greatest big brother in the world.

Because when it matters, when it’s not fun and games, he never fails to show up, never fails to be there when it’s important. Him and my mom were the first friendly faces I saw, shortly past midnight on the worst day of my life. You hope your mom will be there, but for your brother to take a plane ride halfway across the country too, that’s “extra mile” stuff right there kids. ❤️

And truth is….

And I hope he thinks I’ve been there when it mattered and that he knows I’ll always be there no matter what happens.
I love you bro. ❤️😊

that we’d both miss it if I ever stopped doing this, or if he ever smiled for a picture ❤️
Just kidding. He smiles. But the other ones imprint in a special part of my soul. ❤️
(And are, y’know, funnier. 🤷‍♂️😊)
Posted in My Life (or "More About Me Than You Ever Wanted to Know") | Tagged , , , | Leave a comment

An(other) Open Letter to My Mom

Posted on July 16, 2024 by My Bleeding Ink

So today I wanna talk about my mom. Sort of an updated entry to this. Maybe not “updated” as much as more specific.

Today I wanna talk about the kind of mom she is to my wife. As you all know, Kischa’s had a rough year.

And my mom loves her so much. She’s always checking in, always asking how she feels on any given day. Always thinking about her.

But it’s more than words. She’ll make dishes Kischa enjoys and can eat. Kischa has several restrictions on her because of both “the renal diet” and because she developed a dairy intolerance in the last year for whatever reason. So “Mami” will make some low phosphorous, low potassium, low salt, dairy free things for Kischa.

It’s pretty cute actually. 😊

Often you’ll find my mom on TikTok following this chef or that chef, playing the video over and over, making things Kischa can eat. Happily and gladly, because, “I dunno, Kischa liked it.🤷‍♂️☺️” Sometimes I’ll joke after Kischa eats 2 bowls of something my mom made and I’ll say to her, “Well there ya go, you can expect this dinner a couple more times in the next month, because you said you liked it, until she finds a new recipe from a new TikTok chef! 🤣”

A few days ago my mom came to her with a memory foam, “back rest pillow” -a pillow I never knew existed, that has a back rest, and arm rests- and said “I saw this the other day at Target and thought you’d like it.😊”
She knows Kischa gets really tired after dialysis days, daily pt, and whatever other activity happens. And a lot of times Kischa will sit in bed with pillows behind her so she’s not always laying down (and raising risk of pneumonia and more muscle atrophy, and all the other things that can happen if you lay in bed too long.)

Then there’s the shirt my mom bought her, a little black T, that simply says “I’m so glad you’re here.” ❤️

Mami saw this shirt and just wanted to remind Kischa on her bad days that her life and continued existence has value and meaning

So my mom saw the things, thought Kischa would like the things, and bought her the things. ❤️

She helps Kischa in and out of places with stairs when I’m carrying her dialysis bag or am otherwise unable to. She’ll stay awake and help me make sure Kischa’s blood sugar comes back up when it sometimes inexplicably drops at 3am.

So I could go on and on about all the stuff she does for Kischa, but my point here isn’t “Hey look at all the stuff my mom does for Kischa.”

My point is about my mom’s capacity to love. My mom’s heart. My mom’s capacity for love and her kindness and her giving nature. Her patience and her hope that people she loves, in this case Kischa, will heal and get better.

She loves Kischa as her own daughter. Not because “she’s married to my son.” But because she’s Kischa. She’s Kischa “and she needs help right now and she’s my daughter and I love her.”

They are blessed to have each other, and I’m blessed to bear daily witness to it. ❤️

(And who knows, maybe one day Mami will buy me one of those fancy-pants pillows for Christmas or my birthday or something.
But probably not. 🤣🤣🤣🤷‍♂️)

It’s reflexive. It’s in Mami’s DNA to do what she can when those she loves are vulnerable, weak, and need love and support
Posted in Kischa's Journey, My Life (or "More About Me Than You Ever Wanted to Know") | Tagged , , , , , , , | 2 Comments

The Sights and Sounds of Surgery

Posted on July 7, 2024 by My Bleeding Ink

Hey! People with Spina Bifida, or anybody that’s had more than 2-3 surgeries…

……no matter how many you’ve had or what they were for, do you also start to freak out about 48 hours before surgery, or is it just me?!

“Anyone? Anyone? Bueller?”

Because for me, with this relatively minor procedure, I’m not terribly worried about things going wrong.

Just… I dunno….the Sights and Sounds of Surgery™

As soon as you walk through the doors…

“Here, change into this.”

And the wristband they slap on you.

The IV….

The foamy white liquid they use “just to calm you down. “

Versed.

The list of endless questions.

“Have you ever had a reaction to anaesthesia?

“Are you allergic to anything?”

“Have you ever had other surgery?”

(That one’s hilarious to someone with SB!)

Then there’s the person that comes in and marks you up before surgery before the surgeon gets there.

“❌”   “✅”   “🚫”   “↙️”

AND THE LIGHTS!!!!

The flourescent lights and ugly-ass white accoustic tiles that exist in every hospital no matter how “new and modern” it is. Those tiles whizzing past you as you lay in the hospital bed and are being wheeled to the O.R.

I hate those tiles.

I hate the lights whizzing by me.

And when you’re finally rolled into the operating room…..the sights and sounds in there are overpowering to all new senses.

The cold steel “bed” they lay you on.

The bright overhead light.

All the stainless steel tools they’ll use to cut you open.

And the smell of….clean.

Of sterile.

The alcohol, and the iodine, and the hydrogen peroxide, and the ammonium, and the and the and the….

…..smells like wasabi to me.

Like horseradish.

I hate horseradish.

“Count backwards from 10.” Yeah I stopped doing that years ago, never make it past 8 anyway.

Yep. Freaking out a little. I know I’ll be alright. I know it’s a small surgery.

Especially compared to the other ones! Still, 36 years after my first surgery, when I was hours old and I’m sure some part of my subconscious remembers, and 19 surgeries later, its the sights and sounds of it all that are still just

So.

Damn.

Uncomfortable.

Is it just me?

(written a few years ago. We’re up to 22 total surgeries now. Less than some, more than others. 🤷‍♂️)

2013
Less graphic picture than I could’ve posted, of lifetime shunt surgery number, uh, I dunno, 12 probably 🤷‍♂️ 
Posted in Disability Advocacy, My Life (or "More About Me Than You Ever Wanted to Know") | 1 Comment