Tuesday, July 22, 2014

Brain jokes are funny (and what to do when life hands you bald spots)

Last week my kid had a shunt revision.

By which I mean he had brain surgery.

Brain surgery isn't funny. I swear, it's not.

But, since humor is my favorite coping mechanism, I have to work really hard not to make inappropriate jokes during these nail-biting surgeries. Yes, a little brain-humor might make me feel better, but I'm pretty sure it makes everyone around me feel super creeped out.

Jokes I have to NOT make when my son has brain surgery:
  1. Zombie jokes (FYI: surgeon's don't take kindly to the implication that they're going in there for a "little snack.")
  2. Lobotomy jokes (asking the doctor if he can take out the "parts that cause toddler tantrums" doesn't get nearly as many laughs as it should, in my opinion)
  3. Jokes where you just say "Brains!!" a lot. (Like "Careful with his brains on this one, doc!" or, if I'm really getting anxious, "Gosh I hope his brains aren't all messed up after this.")
Thankfully, Greg is quite the brain-joke connoisseur so, at least when it comes to grey matter, he doesn't mind if I add a little color.

But there's one part of this whole thing that I will not-- will NEVER-- find funny.

The dreaded surgical head shave.

I know it sounds shallow, but I firmly believe that any spina bifida mother (whose child has a shunt) or any parent whose child has experienced surgery of the noggin variety, will be totally with me on this. Not only do our kids have to endure the pain, discomfort, and generally ickiness of having their noodles scrambled (<-- that's gross, I'm sorry), they also have to walk around town for weeks with a patchy bald spot like a mangy stray dog. The thing is, our kids get a lot of attention already. Fitting in is something we work hard for. So when you have a crazy hack job for a hair cut, it's just a little... discouraging.

Needless to say, my last words to the surgeon weren't "Do what you have to do!" but were instead "Don't go crazy with the clippers, okay doc?" 

He didn't listen. Simeon came out looking like that infamous sleazebag, Roger Klotz.

If you didn't watch Nickelodeon in the 90s then you were seriously missing out. Patty Mayonnaise was the coolest.

A few folks suggested we turn this mess into a mohawk but I'm kind of a square and, like my father before me, I still see a mohawk as a sure sign of adolescent delinquency (my little baby would look like a naughty kid!). Thankfully, my BFF and a fellow SB mama gave me some advice on Instagram: this can be fixed-- follow in the footsteps of Macklemore and Miley... give the kid an undercut.

Brainiacs! (<--haha) So, three days post-op, I took Simeon to see Jillian (<--- rhyming names = match made in salon heaven). Jillian takes care of my giant mop of hair so I figured she was up for the challenge of fixing Sim's hairy situation. The kid was a real sport and took his haircut very seriously with minimal fussing and fidgeting. Jillian let him stay in his wheelchair for the big event, which meant she did the entire process while down on her knees (because she's basically an acrobat). 

And now for the big reveal...
That BEFORE photo is killing me. The kid has so much hair! He's like a fluffy little duckling. You can still see the shaved area in the AFTER photo but it definitely blends in better and will grow out soon enough.

So there you have it. The undercut is my recommendation for little boys post-shunt-revision (assuming their shunt is in the back). If you have a little girl then... I don't know. But I'm sure, if we put our heads together, we could figure something out.

And now, I'll leave you with some terrible brain jokes (that I found online because I'm not a freakin' comedian).

What kind of fish performs brain surgery?
(a neurosturgeon)
What is a sleeping brain's favorite band?
What happens when you break the brain scanner?
(you have a CATastrophe) 

You're welcome.

What do you think of the new do?
Got any good brain jokes to share?

Friday, July 18, 2014

Shunt malfunction blues and a "thank you"

This won't take long.

I've got a kid to snuggle and a book that's begging to be read but I thought I ought to say a few things first.

This hospital stay was hard.* Not because it was long (it wasn't) and not because Simeon was in grave danger (he wasn't-- not really) and not because hospital food didn't suit my pregnant palate (they actually have a pretty good spread). It was hard because it reminded me.

The thing is, we've had the trach and the therapy and the wheelchair and blah blah blah, but it's been over a year since the dangerous side of spina bifida has visited our family. It's easy sometimes to forget the realities-- to forget that there are parts of this life that, although they remain infrequent visitors, could take my son away from me.

This surgery felt like a reminder. A reminder of the hamster-wheel that is spina bifida. We are running a race without an end. We are having surgeries that will patch, not heal. We are watchful and vigilant.

There is no "out of the woods."

There is no putting this "behind us."

I've said before that life with SB is ninety to ten. 90% lovely and normal and free, 10% rough and tough and challenging. I guess everyone's life is like that, though. Up and down. This week was a 10% week. But it's already fading back to the 90s.

So, thank you.

Thank you for your kind words and encouragement this week.

Thank you for your prayers.

Thank you for helping me laugh about the horrible surgery "haircut" that left my child looking like a Nickelodeon bully.

Thank you for the comments, and chats, and texts.

I don't care what they say about the Internet, and relationships, and modern society, and connection. When you're living in the hospital and visiting hours are over, online friends are real. You guys made a difference to our family this week.



*If you're curious about the medical side, here's what was up this week.
  • Simeon has been getting progressively grouchier for the past 2 or 3 weeks.
  • He started refusing food at times (a breakfast here and there-- nothing too alarming) but then he refused ice cream and I was like HELL HAS FROZEN OVER!
  • He was crying out in his sleep. Sometimes whimpering, sometimes full on screaming. 
  • His nurses started to worry. Since I see him everyday sometimes it's easy to overlook gradual changes. When we got back from the beach, a few of his nurses commented that he was acting "off."
  • We took him in for an MRI (we try to avoid CT scans when possible because of all that nasty radiation), which showed that the fluid in his brain was not draining properly. Time for a new shunt (see below).
  • The surgeon said his shunt was completely clogged and not working at all. He said it had probably clogged slowly over the past few weeks (hence the progressive increase in scream-tantrums around here)
  • A new shunt was placed and we were home within 24 hours. Brain surgery, shprain surgery.
BRAINS!! Here's a helpful pic from Wednesday since I'm a teacher/librarian and I dig visual aids. The "TODAY" side was from his scan BEFORE surgery.

Those of you raising a child with a disability, do you ever "forget" about the tough parts? Do you ever feel suddenly overwhelmed by the reminders?

Wednesday, July 16, 2014

Taking Back Our Power to Inspire (Guest Post by Kara)

I'm excited to bring you this post from disability advocate, psychology professor, writer, and (soon to be) mother of two, Kara Ayers. Kara and her husband Adam have Osteogenesis Imperfecta, or OI (also known as "brittle bone disease"), and together they are raising their adorable 4-year-old daughter, Hannah. The Ayers are currently in the adoption process and will travel to China this week to meet their son, Eli. Today, Kara shares a bit about her status as an "inspirational" woman, her thoughts on motherhood, and why she believes that inspiring others (on your own terms) isn't such a bad thing, after all.


People with disabilities have a long and complex history with the word “inspirational." Parents of kids with disabilities are also not immune to a case of inspiration.  Stella Young, my cross-continent colleague with OI does a beautiful job explaining why inspiration porn is so problematic. Our existence alone is not inspirational. I could add to Stella’s hilarious collection of odd times she’s been informed she’s inspirational. Most recently, a gentleman rolled down his window at the gas station to tell me that I had “inspired” him because “if I didn’t complain, he shouldn’t either." I looked around to see if I’d missed something to complain about. Add that to my gas station paranoia of being robbed/kidnapped/otherwise assaulted and my not-so-great hearing (What? What? Oh… thank you?) and I did have to  laugh.

Over the years, the word inspire has soured in my soul. I dread Internet memes and my frustration grows when I see them shared over, and over, and over. I can foretell the drop of the i-bomb in the first 30 seconds of any media coverage about a person with a disability. It’s in the sad, slow music and the drama-filled descriptions of how troubling life must be. A life like mine. I’ve skipped reading countless articles, simply because the title reeked of inspiration.

In the last couple of weeks, my husband and I have shared our journey to adoption with the media.   We’ve been interviewed, photographed,and videotaped. There’s an element of suspense and anxiety as we wait for the piece to come out. We’ve developed some mistrust and we wonder how our story will be spun. This time so far, we’ve been happy with the results. We appreciate that the media coverage has focused on what we’re working towards—our son—versus false assumptions that we are somehow suffering from these bones of ours.

This experience of feeling accurately and honestly portrayed has surprised me. In one case, the interviewer even used that formerly dreaded word—“inspire”—in posing a question about parenthood for people with disabilities. For once, I answered without the turn of my stomach or the mission to reframe and rephrase. I realized that it’s not the word itself that is problematic. In this case, I DO want to inspire. The path to parenthood isn’t easy for anyone with a disability, but it’s a path I am most proud to have taken.

When I’m braiding my daughter’s hair…

When I’m reading her books…

And even when I’m in survival mode during one of our more challenging moments….

I am so thankful. 

My rodding surgeries to straighten my legs were never about the potential to inspire others, as I tried (but never mastered the ability) to walk. Instead, they’ve allowed me to buckle my daughter into her car seat and then transfer to take the wheel. My arms are quite bowed. Therapy to turn doorknobs and regain strength after fractures never achieved that perfect range of motion score, but it helped me to tie my daughter’s shoes, teach her to write, and fill out dozens of papers to adopt our son.

These parenting acts don’t always come easy. But the truth is: parenting is hard work for everyone! People with disabilities have strengths in their resilience, problem-solving abilities, and creativity. Many of us are more than prepared to be parents, yet so many remain uncertain and miss out on what is, for me, the greatest gift and achievement of my life.

I’m not trying to (dare I say it) inspire a baby boom. I’m merely sharing a couple of personal reflections.

Being inspirational isn’t always a bad thing.  

If you’ve worked hard to achieve what others are inspired by, maybe it is just that: inspirational. In my own adult life I have been fortunate enough to find inspiration in the stories of other mothers with disabilities. The adoptive community has welcomed our family and we hope that people with disabilities will consider adoption as one option on the road to parenthood.

Let’s take back the power in the word “inspirational.” Let’s take an active role in deciding when we are, and are not, inspiring. I'll likely continue to awkwardly respond when people congratulate me for pumping gas, but if even one person with a disability knows they can enjoy this amazing experience of parenthood because of our story, I’ll once again be thankful. 

Inspiration is about more than us (the disability community) and them. As Mother Theresa reminded us, “It was never between you and them anyways.”    

Read THIS great article from Cincinnati.com about the Ayers' family and their adoption experience.
((You can follow the Ayers' adoption journey HERE and on Facebook/Twitter.))



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