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Miranda B.

If you’re a metalhead, I’m a metalhead

Most of us spend a good portion of our lives looking for a person who gets us, a best friend we can rely on through the good and bad.

Not in the cheesy way we often see depicted in Rom-Coms or Lifetime movies, either, but in the way that allows us to be the most real, authentic version of ourselves. Sometimes, we’re lucky enough to find that person right away. Sometimes we’re lucky enough to find that person in our own family. Miranda and Jill are two of the lucky ones. 

For 20 years now, this mother-daughter duo has been inseparable. Sure, there were some moments of teenage angst and general broodiness, but all in all, it’s been a two-peas-in-a-pod situation.

“Miranda didn’t quite have a regular American childhood playing school sports, joining teams, or having a strict routine,” her mom Jill laughingly told us. “Certainly, there was Sesame Street, sandboxes, and good friends, yet she was more apt to play in the storm drains, eat blue cheese and raw mushrooms for a snack, and do her homework in her favorite tree.”

With two parents as artists, she was bound to see and experience the world a little differently. Coloring inside the lines is boring, anyway.

Miranda would use her formative years to experiment with who she was and what made her the happiest. That included rock climbing - beginning at age 8 - and numerous competitions where she would use her “magic move” to stretch her reach beyond the limits of what onlookers thought possible. 

Later, it would shift into music and a strong love for all things Sweeny Todd and heavy metal, especially bands like Slayer and Iron Maiden. She also became a huge fan of scary movies, the gorier the better.

As Miranda began to learn more about herself, she discovered a truth that had been a constant in her life all along. With the benefit of perfect hindsight, she discovered something she never saw coming.

Remember her magic rock climbing move? The one where she stretched her arm to grab a hold that seemed far past her reach? It turns out Miranda was dislocating her shoulder joint every time she did that move, the outcome of a rare genetic disorder that had gone undiagnosed for her entire life. It’s called Ehlers-Danlos Syndrome (EDS). 

EDS is a rare disease that affects the connective tissues and alters all the signals within the nervous system. Symptoms include overly flexible joints that can easily dislocate, and skin that’s translucent, elastic, and bruises easily. Miranda also has pain at some level each and every day.

“Everyone attributed it to ‘growing pains’ and all the while, she thought it was normal to hurt,” Jill told us. “No one ever really knew what she had always lived with.”

When her mom tearfully apologized for the new difficulties in her life, Miranda simply replied, “It’s not difficult, just different.” The strength this cerebral 20-year-old continues to exhibit each and every day is beyond remarkable.

Take this for example: Miranda now has a torn labrum, but with EDS, surgery is not advisable. The only option is to strengthen, strengthen, strengthen (and luckily, her physical therapist Bonnie is beloved by the family). She also must sit in a reclined position to alleviate her hip pain and limit her dizziness and faintness. That equates to way too much time seated or in bed.

For many 20-year-olds, that would be the recipe for disaster. Not for Miranda.

She’s used that time to discover new ways to create and use her artistic ability, designing fabric and working on a loom to create beautiful pieces and artwork. You can find and support Miranda’s incredible work on Pinterest, Etsy and Spoonflower. She’s good at it - really good.

She’s also spent a lot of time growing closer to her mom, if that’s even possible. When we talked to her, she said, “If my mom’s quality of life improves, my quality of life improves.” 

These two enjoy their incredible old puggle, Auggie, and two new little guinea pigs named Noodle and Ted. 

“We stay up until 2 or 3am talking philosophy or discussing Miranda’s new obsession with the Texas Chainsaw Massacre franchise,” Jill laughed. “While the latter holds zero interest for me, I find I simply love listening to anything that lights up the face of the light of my life.”

Chive Charities is aligned on that goal, and we’re here to light up Miranda’s face with happiness, too. Her mom, Jill, is doing everything in her power to make Miranda’s life just a little bit easier. That’s what you do for your other half, the person who gets you. That’s what it means to truly be there for someone, to be the go-to with no questions asked. 

And wouldn’t you know it, Chive Charities was founded on that very idea. When our rare medical, veteran and first responder recipients need a go-to, they turn to us. 

Our donor family is committed to making life easier for people just like Miranda and Jill. She needed a recliner to help with her hip pain and EDS symptoms, and that’s exactly what our donors got her. 

She needed a recumbent elliptical to help with her therapy and strength training and a smaller, more lightweight wheelchair, so our donors got her those things, too. And while the above photo isn’t of Miranda on her new elliptical, here’s a photo of her literally on top of the equipment that just arrived.

The total grant impact impact thanks to Chive Charities donors like you is $2,664.

If Jill and Miranda are the two peas, Chive Charities is the pod there to support them. And just like that dynamic duo, we’ll be there no matter what comes your way. If you or someone you know is a veteran, first responder, or rare medical individual in need, read our FAQ page and learn more about applying for a life-changing grant. 

And if you want to be part of the community of supporters that make it all possible, join the Chive Charities family and DONATE HERE. 

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