Three hands of the same family.

Finding Love and Family With Limb-Girdle Muscular Dystrophy

I’m 32, a wife and​ a mother who just happens to have limb-girdle muscular dystrophy. I’ve learned from experience that children who learn they have a disease at a young age may worry if they will ever find true love, someone to love them as they are. I want to tell my story so they can have hope that true love does exist. No matter who you are.

My amazing husband Brandon and I have been married for 13 years now, but our story started almost 21 years ago in middle school. He is my best friend, the one person who knows me better than I know myself sometimes. He knows all my faults and imperfections and still loves me. I would be lost in this world without him.

When we’re out, sometimes people see us together and they look confused, perhaps wondering why. I have mixed feelings about this, even though we’ve together for almost 20 years now. On one side, my insecure mind puts her head down and agrees with these complete strangers, who probably know nothing of true love. But the other, more dominant part of my brain says “yes that’s right, he’s mine.”

Don’t get me wrong, we’ve had our ups and downs like any relationship, but we don’t fight like other couples I see. We bicker or pick more than anything. However we’ve had a few more obstacles to overcome than other relationships. Maybe it’s taught us to not take what we have been given for granted. It is a gift when you find someone who truly sees you and also opens themselves up to you, sharing their heart. I always thought I’d be alone when and if I ever grew up. That no one could love a person like me. I felt like they just saw my wheelchair, and wouldn’t take the time to get to know me.

At the age of 11, I met a little girl who quickly became my best friend, and she had the cutest cousin. He and I were both in summer school that year and that’s how we met. He was so sweet and funny and he looked at me when we talked, not at my chair. I never thought he’d like me back. He made me feel normal, whatever that means. Made me try harder. Not that I wasn’t loved by my own family, but this was a different feeling. It was the most amazing and yet scariest feeling all at once.

I gave my heart away when I was 13 years old, to a little boy who is now my loving husband. Throughout that time we have overcome so many things. High school, breakups, doctor’s appointments. I started using a power chair when I was 17-18; that was a big one. Moving in together, getting married. Hearing recommendations not to have children and deciding not to listen — which I think of as being our greatest accomplishment.

Almost as soon as we were married in 2004 we decided we were going to try for a baby. I think we were worried if I didn’t do it early on, maybe I would become too weak and we would miss our opportunity. We knew there are other ways — adoption, having a surrogate — but all I ever wanted since I was a little girl was to be like my mother. At the same time, I was terrified the child could have what I have and that I was being selfish. My life had not been easy — would I want to knowingly do that to my own child? We decided to go ahead and try.

I was pregnant within the month. I loved being pregnant, I truly did. To feel her grow inside of me. Even the morning sickness (more like all day sickness) for five to six months and the kicking was welcomed. When you’re told for so long you won’t be able to do something, it’s that much better. I didn’t have to be on bed rest like they said. I had a C-section and she came out healthy, kicking and screaming (probably the prednisone) 6 pounds, 4 ounces and beautiful. She looks just like her daddy to me, which I personally couldn’t be happier about, but I suppose she is a good mixture of the both of us now.

She was tested at the age of 2 for muscular dystrophy, and nothing. She may be a carrier, but no symptoms at all. She’s a good child, 12 years old now. She’s so smart and pretty, sassy, and extremely caring. She is my answered prayer, a gift from God.

Fyodor Dostoyevsky wrote “The mystery of human existence lies not in just staying alive, but in finding something to live for.”

I’ve found mine and it’s possible for you too. Don’t sell yourself short, disability or not.

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Photo via Thinkstock.


people riding horses through grand canyon

Rebel With a Cause: Training to Ride a Horse Across the Grand Canyon With Muscular Dystrophy

It’s been a while since I have been on a horse. Since I got hurt I’ve been too nervous but today I found the courage to get back in the saddle. Today I returned to therapeutic riding at Chastain Horse Park on a magnificent equine named Rebel. Quite the appropriate name considering I need to be somewhat of a rebel to reason to think I can successfully cross the Grand Canyon next spring.

I admit I yelped in fear during today’s session, more than once. And I’ll be honest, I was scared. But Kelcy Smith Rainer, my therapeutic riding instructor, was there to calm me down, keep me safe and keep Rebel in check.

Today was a big deal in my world. It’s no small feat to ride a 1200 pound animal, especially in my condition. 10 years ago I was diagnosed with a rare type of muscular dystrophy that has no approved treatment or cure. I have a muscle-wasting disease that affects my entire body from head to toe and leads to severe incapacity within 10-15 years of its onset. My body has deteriorated so much over the past decade that I now rely on a fancy gold chariot, and two leg braces to keep walking.

In my riding session we did the rounds in the large covered arena. Several times I had to fix my posture. We practiced “stop and starts” and wide turn circles. This is not exactly the most exciting session for an onlooker to watch. While I am by no means, and probably will never be, an accomplished rider, I felt an enormous sense of accomplishment today and that’s a game-changer for me.

I’m 40 years old, in the prime of my life, a time when I thought I would have had children. But while my friends shop for the latest and greatest strollers, the only wheels I am checking out are for scooters and the inevitable wheelchair to come. While they struggle to find childcare to go out on a Friday night, I struggle with the reality that I might eventually need my own caregiver, so not all the work falls on my husband.

For everything this cruel disease is taking away from me, riding at Chastain Horse Park, and training for our Grand Canyon expedition, is giving me back ten-fold hope, empowerment, adventure, a safe place to be scared and vulnerable and a special space to be equally brave and bold. I am reminded it’s not about being the most accomplished rider. Instead I strive to remain rebellious in the face of adversity, to feel that sense of accomplishment, as simple as it might be to be brave enough to be back in the saddle. Now that’s a rebel with a cause.

#princessrisingHIBM #rise4inclusion (HIBM: Her Inescapable Brave Mission)

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Thinkstock photo via tonda.

Slipping on ice.

When I've Fallen and I Can't Get Up

I think it is safe to say that it is embarrassing for anyone to fall down in public, even for  people that can quickly get back up and run away. For me however, it is a different story. As a university student I have a lot of walking around campus to do. As a university student with a physical disability, I have even more to do than just walk around campus. I need shoes that have grips, but not so much grip that my foot will catch and I will trip. They also need enough grip that I won’t slip backwards. This is hard to find in a shoe.

Even once I do find a good shoe, trips and slips are still inevitable with muscular dystrophy. Luckily, in my time at university so far I had only tripped once, and I was with my sister who knows how to help me back up — no big deal. But it was always a thought in the back of my mind that one day I will fall by myself, and will have to swallow my pride and ask for help back up.

The inevitable finally happened today. After I clumsily slipped on piece of ice hidden at the bottom of a puddle, I knew I was going to fall. After falling my first thought is always “I hope no one saw that,” but reality quickly reminds me I cannot get back up on my own, and fear sets in. I always go into a daze when I fall; it’s like tunnel vision and all I’m focused on is getting up. So I guess it was lucky that today I fell right in front of another student, who quickly lent a hand to help me up. But while a simple hand is enough for the majority of people, I had to explain to him that my legs don’t work well and I will likely need two people to help me back up. He kindly waited with me until another person came by and they both picked me up. Still in my daze, I said thank you probably a million times. I do not recall what they may have said to me; all I cared about was getting to my car and going home.

I have lots of experience falling in public, but as muscular dystrophy is a progressive disease, I have only recently not been able to get back up on my own. As a 20-year-old who wants to be as independent as possible, it is terrifying to know that for the rest of my life, if I fall I cannot get back up. This scenario is often ridiculed lightheartedly by people joking about the Life Alert “I’ve fallen, and I can’t get up!” commercials. As a kid I thought those jokes were funny, until it became my life. Knowing my body cannot support me can feel horrifying. It is difficult to not immediately cry of embarrassment when things like this happen. It is also difficult to not go into that dark place of self-doubt for the future, feelings of failure and the panic of “when will it happen again?”

While I wish I didn’t have muscular dystrophy, I am grateful that it has taught me two very important things. One, there are great people in this world such as friends who won’t judge you, and strangers who will pick you up off the ground. And two, I can’t wait to finish my degree and move somewhere warm where ice on the ground doesn’t exist!

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Thinkstock photo by Astrid Gast.

Disappointed Young Woman Looking In Window

To the Father and Son Who Laughed When I Fell: Here's What You Need to Understand

Trust me, I understand, sir. Many things are funny in this world, including when someone trips and falls. I mean, I fall victim to laughing at times when a friend slips on ice or accidentally trips on something; however, when a person is obviously using a device or if this person happens to be elderly, the time to help pops in the brain. Nothing funny of the sort comes into mind.

My favorite time of the year is Christmas, but Christmas shopping is definitely a scary experience for me. I have limb-girdle muscular dystrophy type 2B, one of the many forms of muscular dystrophy. At a progressive rate, my muscles in my legs, shoulders, and pelvis are wasting away, but do not worry folks, my spirits are far from wasting.

Christmas shopping is scary; no parking, erratic drivers, beat-you-down-and-steal-whatever-is-in-your-cart type of shoppers, heck I stopped at the stop sign at the intersection of the shopping center I go to and got harassed by the driver behind me because I stopped at the stop sign. Well, typically I wait to Christmas shop before Thanksgiving and finish the last week before Christmas because typically the stores I usually go to are not as busy for holiday season around those times, which means less stress, anxiety, and pain; however, this year was rather sad and appalling to me.

Soon I will be getting my joystick wheelchair, but for the time being I have reduced my walking, and if I do walk I use a device, my cane. I was walking in the store I was Christmas shopping in and I was using a cart to maintain my balance and posture and hit a rack of clothes, making me trip and almost fall.

When I trip and do not fall, typically I need someone there to help me regain my balance by holding my hands or back or whatever works in the moment, so thank goodness my mom was by my side — until I heard a hurtful, disappointed, and quite frankly rude gesture. While I almost tripped and fell, a father and his young son burst out laughing and pointed at me. In the moment, forgive me when I say this, I wanted to hit that father with my cane, but of course that is not the right thing to do. I am an individual who gets fired up fast and thinks a billion and one thoughts, but I did something I do not usually do: I was left speechless with my jaw down to the floor.

I remember growing up and my mom telling me to accept everyone for who they are and help a person who may be in need or in trouble or hurt. I was told never to bully, never to judge, never to shame anyone. I understand I am young and do not have the muscle strength of people my age. I can’t go out to the club with my girls and wear heals, I can’t play any physical sport like I did as a kid or even go to half the concerts I want to due to no seating. I am excellent with children and used to babysit a lot, so when I try and interact with a child I just met or see at the store and that child asks their parent why am I walking with a cane and usually the parent says, “Do not talk about that girl or look at her,” like I am a freak or something, I don’t understand. Yes, hello, I am young adult with a cane and soon-to-be-wheelchair. I am not contagious if you are wondering, parents. Trust me, I will not infect your children with the itty bitty meanie weenie muscle destroyer villains making a holiday feast out of my muscle tissue.

Does anyone think the reason behind judgment and bullying has to do with inconsistencies in our education or learning experiences? Children from a young age are often told not to bully. They’re often told how culturally diverse the world is. However, children do not seem to be taught about differing abilities like my muscular dystrophy, and I believe parents and teachers are to blame.

I am not trying to call out parents or teachers, but most of the time people want to look at differing abilities and just sweep them under the rug, like they’re not an issue. We see this with other issues like racism too, of course. We sweep the things that make us uncomfortable under the rug because there is no need to “add fuel to the fire” or “stir the pot.”

But if we do not talk about these issues, we will get nowhere. We have to talk about the issues considered “hush-hush” to promote and advocate change. I’ve even gone to the extent to ask parents I know their thoughts on teaching young children that the world is not only diverse in color but also abilities, and many were afraid to teach or even talk about differing abilities. Many people in this world also have differing mental or cognitive abilities, different physical abilities, invisible illnesses etc., and these all affect people from different genders, colors, and ages and provide an even more diverse world, but so many individuals are nervous to offend or talk about individuals with differing abilities in fear of showing what is not “normal,” when in fact, there is no “normal.” Throw the word “normal” out of your vocabulary.

We should embrace our differences, accept our similarities, realize our faults, and educate the world to fully promote inclusion. Just because my legs do not function in a “typical” manner does not make me any lesser than you or better than you.

So to the man and his son Christmas shopping who laughed at something I consider serious, I hope you had a happy holiday, and I hope the new year educates you and provides you fully with an understanding.

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Thinkstock photo by Highwaystarz-Photography

This Mom Created Coloring Books That Feature Kids With Disabilities

9 Things Parents of Kids With Neuromuscular Diseases Wish Teachers Understood

9 Things Parents of Kids With Neuromuscular Diseases Wish Teachers Understood

“Neuromuscular disease” is an umbrella term for several muscle-debilitating diseases that cause progressive weakness and degeneration of skeletal muscles used during voluntary movement. You may have heard of a few of these conditions — amyotrophic lateral sclerosis (ALS), Duchenne muscular dystrophy (DMD) or Charcot-Marie-Tooth disease, for example — but neuromuscular diseases remain unknown and misunderstood to the average person. It is unclear how many people are affected by neuromuscular diseases, but they do not discriminate and often affect a person’s ability to walk, talk, eat and even breathe.

As we start a new school year, The Mighty teamed up with the Muscular Dystrophy Association to raise awareness about neuromuscular diseases and the challenges students and their families face when teachers and school staff do not understand their condition. We asked parents in our communities what they wish their children’s teachers understood about neuromuscular diseases this school year.

Here’s what they had to say:

1. “Neuromuscular disease can affect how you concentrate because you are so tired. It can affect your handwriting to the point where you write in a messy way and can’t write for a long time at all.”

2. “I am not mean, aggressive, or rude, but I will advocate for my children, and sometimes, firmly. If my son is being bullied because he cannot run, I will fight for him. I am not your enemy, but I have to have thick armor in this world to protect my children. I know the job as a teacher is hard, but my job is hard as well. Please work with me and meet my son where his is on his journey.”

3. “My daughter wants nothing more than to blend in. See her, not just her wheelchair.”

4. “My son is wonderfully stubborn, smart and lovable. Some days are harder than others. Some days he’s super tired but can’t explain it because he’s nonverbal. He has a neuromuscular disease, but he is not the disease. What works for one student may not work for him.”

5. “It might take longer for students with muscular dystrophy (MD) or other neuromuscular diseases to get to class than others, so please bear with them on this.

6. “It’s not contagious. People [with neuromuscular diseases] are just like everyone else. They just want to be accepted and treated ‘normally.’ They may need some help physically, but they’re still real people with feelings.

7. “Have patience, compassion and seek knowledge for this disease.”

8. “We are not making excuses when our kids are too tired or anxious to attend or do their homework. You do not know our children like we do. They have anxieties we could not even fathom due to their bodies not cooperating with them.”

9. “I appreciate the concern greatly for his well being but don’t overthink his condition. It may sound harsh but a lot of people hear “disability” and think the person can’t do anything. My son is a wonderful, strong 10-year-old and he is very vocal. He would be the first to say if he can or can’t do something. These individuals including my son have been raised to be independent, and the minute you question them and withhold them from being able to make their own decisions, they feel not so independent and it also at times embarrasses them.”

Real People. Real Stories.

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We face disability, disease and mental illness together.