An(other) Open Letter to My Mom

Posted on July 17, 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
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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 🤷‍♂️ 
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This is 48

Posted on May 18, 2024 by My Bleeding Ink

So this is 48. And with Spina Bifida, feels more like 60+
(Yes “Spina Bifida years” is a thing. I can tell you all about it in a future blog post.)
But yeah, 48. Exactly twice as long as I thought I would live when I was a kid. Why 24??? Dunno. 🤷‍♂️ Just figured we, people with SB, all die young. Advances have been made since I was growing up in the 80s, but back then I remember I would get the Colorado SBA newsletters and I’d read that this 12 year old died or that 14 year old died. And so I figured that would just be me too. 🤷‍♂️ When that didn’t happen in middle school, and then high school, I just thought “ok. 24.” (And not for lack of opportunity! I had 8 surgeries from 7th to 12th grade!) And why 24??? 🤷‍♂️🤷‍♂️🤷‍♂️ And now here we are, twice as long as that. And 10 years, almost to the day, longer than my latest, uh, “big ugly thing” (because the last half of 2013 sucked and it caught up with me in 2014. Also, my brain is broken. And stupid 😐)

But I’m still here.

So is Life a gift? Is it a punishment? Is it God given? Is it a random happenstance of millions of years of evolution? Are we just a fluke? Why are we here? Why is Anything?

I don’t know. My faith in any of the aforementioned theories is sadly not strong enough for me to be sure of any of them.

“From childhood’s hour I have not been as others were.

I have not seen as others saw.”

~Edgar Allan Poe

I think too much, I feel too much, I ponder too much. I’m sensitive. I wear my heart on my sleeve. People I love and who love me have called me everything from “a big Sally” to a straight up “tortured soul.”

I’ve never felt like I was good at Humaning.

Existing.

Being alive is not really my forté.

And I feel like I’m the only one out there that ponders Existence as much as I do. But then I found at least 3 other Weirdos™ in our community who constantly think, “Why am I here? Why am I alive? Whats the point of it all?” as much as I do. Like it’s going outta style.

I don’t know why. But I have a feeling this is just something that happens when

you’re forced to face your own mortality over and over from such a young age.

I dunno.

But it’s nice to not feel so all alone in my nightly pondering.

I don’t know why I’m here. But here I am. Husband, son, caretaker, friend. And in honor of people like Tom. Michelle. Eric. Jen, Sara, and little Eli, and so many others who were born with this thing and died from this or with this thing, I will keep going. For my wife, Kischa, who needs me now more than ever. Fighting my own physical issues and mental demons to keep being here for her. I want to see her get stronger, get a kidney, and get back to some semblance of the life, the energy levels, the activity she had. I want to see that. Man I wanna be here for that. ❤️

For my beautiful mom, who would be devastated from my absence no matter what the cause.

So. Ok. Life goes on. Trying to get healthier, trying to get my bones stronger after being diagnosed with “severe osteoporosis” at 47.

–Nobody knows why. As far as anybody knows, osteoporosis isn’t inherent in Spina Bifida. But then again nobody knows jack about squat when it comes to adults with SB because up until the late 1950s, most of us died before we reached adulthood!

But yeah, apparently there’s a reason I took a relatively mild spill and broke my back last year. Apparently there’s a reason I fell and broke my knee 2 weeks before I was scheduled for the initial 2nd CoVid vaccine in late 2021. Hell, osteoporosis might’ve even been the reason I took a light tumble from a puddle of water in a hotel bathroom and broke my wrist in 2008, but nobody thought to check for osteoporosis on a 32 year old!!–

So, yeah, I go to the gym to strengthen my bones. I do the daily shots in my belly that they prescribed, and I lift the weights they said would help bone density, so that maybe next time I fall, I don’t break anything. Fortunately I had already lost 38 lbs before my osteoporosis diagnosis, during the year after my wife’s ESKD diagnosis. Sure it’s mostly from stress, anxiety, and increased activity from all of her new doctor’s appointments that it happened, and yeah that’s probably not the healthiest way to get back to the weight of my early 20’s, but, y’know, whatever. 🤷‍♂️ Now that I’m here Imma try to keep it off! Keep it off so I can stay ambulatory as long as I can, and to build bone density so I stop breaking bones every time I slip on a random patch of ice!

And so life goes on. And I don’t quit. And I won’t quit. Because my wife needs me. And because I want to see where the gym gets me. And because I want to see my friends. And because there’s a musical coming in August that I never get tired of. And because I want to keep watching Colbert.

Whatever keeps me around.

Wish I knew who wrote this originally. Loved/related to it from the first time I saw it on a Tumblr post

Here’s to 48 and hopefully a few more. For Tom, 58. For Michelle, 50. For Jen, 40. Sara, 40, Rayleen, 24, and Eli, 12, and for so many others with Spina Bifida who didn’t get the 77.5 average American life span. I’ll keep going for all those reasons and more.*
Happy birthday to me.

Cheers 🍻

*Disclaimer: I know a 76 year old with Spina Bifida and several people, in real life, in their 50s and 60s. So, y’know, hopefully I can be like them.

Me at the stoopid gym, like I have been regularly for the past couple months, for my stoopid bone density and my stoopid mental health. 🤣🤣🤣…. 😐

Posted in My Life (or "More About Me Than You Ever Wanted to Know") | Tagged | 2 Comments