Megan Living With Spina Bifida

Megan Living With Spina Bifida Empowering others through my journey with Spina Bifida — advocating for awareness, accessibility, and hope, one story at a time.

04/06/2026



Birthdays are meant to be celebrated.

My birthday was actually back in January, but an ice storm forced us to cancel—definitely not how I imagined celebrating my 40th. It was such a bummer, especially since I had won a wine tasting certificate at the Spina Bifida Association of North Texas 50-year Gala silent auction (an event that was extra meaningful to me, as I was honored for my work as the Adult Group Chairman).

It took a while to reschedule, and there weren’t any available classes until March—but I still wanted to celebrate. After all, you only turn 40 once.

When the day finally came, it was absolutely worth the wait. We did the “Tour of Italy,” tasting around six different wines, and our wine supervisor, Triston, shared so many interesting facts along the way. It turned into such a fun and memorable night.

What made it truly special, though, were the people who showed up for me.

I felt so loved being surrounded by friends who don’t see me as different or focus on my disability—they just see me. Some of them have been in my life for years—one since 3rd grade, another since 10th. Others came into my life because of spina bifida, and I’m so thankful for that connection. What started as sharing a diagnosis has grown into sharing life, in every way. And some friendships came through my kids, turning fellow moms into meaningful parts of my world.

My sister was there too—she’s been by my side for all 40 years. Through surgeries, hospital stays, hard seasons, and joyful moments, she’s been a constant.

And of course, John. He’s seen every side of me—the highs and the lows—and loves me through it all. He doesn’t see a disability; he just sees me. He supports me in every way, and I’m so grateful to walk through life with him.

This celebration may have been delayed, but it was filled with so much love, laughter, and gratitude. I wouldn’t have wanted it any other way.

Late post.  Last weekend we had another Spina Bifida Association of North Texas Adult group lunch.  I love planning thes...
03/31/2026

Late post. Last weekend we had another Spina Bifida Association of North Texas Adult group lunch. I love planning these monthly events and getting our support system together. Like-minded adults and support groups is very important, We can all share our life, health, challenges, and much more. Spina Bifida is known as the "Snowflake condition" because not 2 person are the same. so this is even more of a reason to reminder to build a friendship group.

03/25/2026

The Infyna Chic by is a type of intermittent catheter—meaning it’s used to drain your bladder at certain times during the day, rather than staying in all the time.

Here’s a simple breakdown:

What it is
• A single-use, pre-lubricated catheter designed mainly for women
• Used for intermittent self-catheterization (ISC)
• Comes ready to use right out of the package (no extra lubricant needed)

What makes Infyna different

It’s known for being more discreet and lifestyle-friendly, which is why a lot of women like it:
• Discreet design – looks more like a cosmetic item than medical equipment
• Compact case – easy to carry in a purse or pocket
• Leak-proof resealable case – helps with odor and hygiene after use
• One-hand opening – helpful for accessibility and independence

Comfort features
• Hydrophilic coating (activated with fluid) for smoother insertion
• Uses something called HydraBalance™ lubrication to reduce friction and protect the urethra
• Designed for “touch-free” insertion, which can lower infection risk

In real life

It’s basically designed to make catheterizing feel:
• Less clinical
• More private
• Easier to do on the go

Happy World Down Syndrome Day 🤍Today we wear mismatched socks in honor of my sweet niece, Remi. She is the cutest, happi...
03/22/2026

Happy World Down Syndrome Day 🤍

Today we wear mismatched socks in honor of my sweet niece, Remi. She is the cutest, happiest, most beautiful little 4-year-old—and she just happens to have Down syndrome.

But that diagnosis doesn’t define her. Remi is perfectly made, exactly as God intended. She is full of joy, light, and a spirit that draws everyone in. God doesn’t make mistakes, and Remi is such a beautiful reminder of that truth.

Keep shining bright, sweet girl, and showing the world that there is truly nothing “down” about it 💛💙.

03/18/2026

Celebrated our 17th wedding anniversary on Sunday and love is the easiest decision I have made.

Seventeen years later, and you are still my easiest decision. You’re still my favorite phone call, and I will never get ...
03/16/2026

Seventeen years later, and you are still my easiest decision. You’re still my favorite phone call, and I will never get tired of the “Hey beautiful” texts. I choose you today, tomorrow, and every day after that. Thank you for always seeing me for who I truly am and never defining me by my disability. Loving you gets easier and deeper with every passing day.

And a very happy 46th anniversary to my parents. Your love has been the greatest example to us. We are so grateful for the way you continue to show us what it means to keep a marriage strong, full of love, and worth choosing every single day. ❤️

03/13/2026

I'm highly impressed with Grüns Superfood Green Gummies. I wasn't sure I would like these and to my surprise they are really good. I'm excited to check back with yall.

Grüns

03/09/2026

One thing many people don’t realize about spinal cord injuries and neural tube defects like Spina Bifida is how much they affect body temperature regulation.

Because the spinal cord carries signals that control things like sweating, shivering, and circulation, damage to those nerves can make it hard for the body to respond normally to heat or cold. Many of us can’t sweat properly in paralyzed areas, which can cause overheating, or we may feel unusually cold due to poor circulation.

Today I suddenly spiked a 101.7 fever and had intense full-body pain, but several hours later it passed. When I do get sick, my fevers often run very high (103–104) because my body struggles to regulate temperature.

On top of that, I had a bad fall last night transferring from my bed to my wheelchair. Today I’m dealing with severe back pain and a strange nerve pain in my paralyzed foot—almost like a phantom or floating sensation.

Living with Spina Bifida means your body can react in ways most people don’t expect.

What’s something you didn’t know about neural tube defects and body temperature?


02/28/2026

Friday at the zoo

Thankful for my handy husband that fixed my Smoov wheel assist.  Crazy that it is only a year old and it already broke. ...
02/24/2026

Thankful for my handy husband that fixed my Smoov wheel assist. Crazy that it is only a year old and it already broke. Turns out some wires were being pinched due to the manufacturer build.

Address

Ponder, TX

Website

Alerts

Be the first to know and let us send you an email when Megan Living With Spina Bifida posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Share

Share on Facebook Share on Twitter Share on LinkedIn
Share on Pinterest Share on Reddit Share via Email
Share on WhatsApp Share on Instagram Share on Telegram