Community Chat-Sarah

Hello and welcome to a new week at Humbly Courageous! 

This week I am so excited to share a new community chat with you. 

Sarah and I have something very unique in common. We both live with the rare neuromuscular disease, Bethlem Myopathy. It has been incredible to connect with Sarah over the last few years, and witness her journey to motherhood.

Like me, Sarah has spent much of her life searching for answers and trying to make sense of this disease. 

We have many similarities, and “meeting” someone who truly understands just how difficult this journey can be, is truly life altering. We also both recognize how we can find beauty in the hard and amongst the pain. Our faith is strong, and we both agree that we wouldn’t be here today without our relationship with God. He is our strength on our weakest days.

I was so honored to be someone she could come to with questions regarding her pregnancy and becoming a mother. That is something I longed for when I was entering into motherhood. 

Her first message to me a few years ago said this: “Amy, I found your blog today. And I have cried tears with every one I’ve read. I, myself, am living with Bethlem Myopathy. You have no idea how you’ve already impacted my life, and are already such an inspiration to me. I can’t wait to continue reading your heart!”

When I tell you this connection is the epitome of why I continue to share my story, this is it!

I am just in awe of how God connects us and our stories, to help us along our life’s path. The ripple effect of just this one connection is astonishing.

I hope you will enjoy learning more about Sarah! 

Sarah and her beautiful daughter

Tell me a little about yourself. Name, age, where you are from. Future Goals.

Hello! My name is Sarah, I am a 27-year-old wife and mother to an amazing little girl who

will be 1 in August. I am living with a rare form of muscular dystrophy, Bethlem myopathy,

and my daughter shares this disease. I am from North Georgia, and I have always lived

here!

One of my future goals would be to build support and better understanding to other people

for my daughter where she can grow up with her diagnosis without feeling like people

“pity” her, if that makes sense. Growing up, my family’s support meant everything to me- I

was never “pitied” and I never felt like they thought all of this was in my head, but there

were certainly others who made me feel this way. My diagnosis did not come until I was

nearly an adult, and even though I was "unidentified" for a little while, my family was

always there for me when no one knew what was wrong with my body, only that I was

“different”.

I would love to, and somewhat have already, become a resource for other parents

navigating life and parenting with a disability, and/or have a child they share a disability

with.

I want to be open and consistent on my social media about life with Bethlem and how it

affects parenting, my daily life, and to share more real and raw moments.

Another goal I have is to stay on top of documenting Eliza’s journey so that she can look

back one day on her life. For her, and for me. To be able to look back and see just how

strong we really are, in our own way.

 

If you are comfortable, talk about your diagnosis and when you were diagnosed.

 

After years of being misdiagnosed, a partial diagnosis of an unknown type of muscular

dystrophy came from a muscle biopsy done with one of my surgeries for bilateral hip

abductor, hamstring, and achilles tendon lengthening. That biopsy was taken in 2007 and

wasn’t followed up on for a few years after. After more genetic testing, I was officially

diagnosed in 2014 when I was 17 years old with Bethlem Myopathy/Ullrich CMD. They

have categorized me on the spectrum as being intermediate, right in between Bethlem and

Ullrich.

 

How has meeting and connecting with others who also have Muscular Dystrophy or other

disabilities been beneficial to you?

 

Connecting with others who have the same or a similar disability has been very grounding

and healing for me on this journey. It has offered something that no doctor could ever do,

and that is being understood without any explanation. It’s given me and many others a

community and not just information. These people just get it! Not just the medical terms,

the fatigue, the severe muscle weakness, and invisible effort. It’s the kind of connection that

lifts the isolation that comes with a disease so rare and so many other misunderstood

conditions.

It has allowed me to see myself more clearly. Their strength has given me the words and

inspiration for my own.

It has opened the opportunity for an open space for honest conversations.

 

What are some challenges your disability has presented, and what has successfully navigating through those challenges taught you?

One of the main challenges for me is the muscle weakness that comes with this disease. The

world tells us we can fix our bodies if we just work harder, but that doesn’t apply here.

People like us have to focus on supporting what our bodies need-this could be special

mobility aids, AFO’s, and other special equipment.

Another for me is the emotional weight of an almost invisible progressive muscle wasting

disease. The challenge is that from the outside people might not understand the daily effort

it takes. And there’s also the grief in watching your own body change in ways you cannot

stop. How I can navigate this is leaning into this community and connecting with others

who get it. Sharing openly. Learning to give myself space for grief and gratitude to coexist.

While there is so much a body like mine cannot do, there is so much it can do. My faith in

Jesus has taught me that I don’t have to carry this alone. His strength sustains me. I lean

into Him. He sees me. He sees Eliza. He understands when no one else does. He walks with

me through every high and low.

Parenting with a disability has also been a much harder challenge than I ever could’ve

imagined. And now that we know she has the same condition adds both emotional and

physical layers to motherhood. I can try and navigate through this challenge by celebrating

every small milestone, even if it is super delayed because of her weakness already, for both

of us. Love and ability defines our bond. Not our disabilities. I trust and believe that God

did not make a mistake by giving her to us. He equips me with love, the advocacy she

needs, and nurture in a way only I can give.

Through it all, I couldn’t walk this journey without Jesus. He is my rock, my hope, my peace in uncertainty. Without Him, I would give up. With Him, I keep going-even on the

hardest days.

 

How has your disability shaped your life up to this point?

 

This disease has taught me what it means to live in a body that doesn’t follow the rules. I’ve

learned patience, not just with my body, but with the pace of my life. Things take more

time, more effort, more creativity. It’s shaped how I define strength. Not what I can lift or

accomplish. It’s shaped how I see others. Making me more compassionate and more aware.

More tuned in to invisible battles. It has shaped my motherhood. Giving me a deeper

appreciation and fierce love for my daughter who shares this path with me. It’s shaped my

faith. Because every time I’ve come to the end of my strength, Jesus has met me there. He

has shown me that I am not limited in ways that matter most. That even in a body that feels

broken, I am fully loved, fully seen, and never walking alone.

Bethlem Myopathy has challenged me-but it’s also shaped me in more ways than I could

put on this paper. It has become a lens through which I see beauty, purpose, and God’s

faithfulness more clearly.

 

What is one thing you would like people to know about disabilities that may be a common

misconception?

 

I would want people to know that even though you can’t see all of the ways Bethlem affects

me, it is real. Every symptom is constant. Resting isn’t a weakness. That just because

something looks small or simple to you-doesn’t mean it was easy for me.

A common misconception is that I just need to stretch more, work out, or try harder-and

that it would make me “better”. But that’s not how this disease works. This is a genetic,

progressive muscle condition. No amount of effort can reverse or stop this. In fact, pushing

too hard actually can make things worse.

 

Tell a little about how you know me, and how me sharing my story may have helped you in some way.

I found Amy on social media-and even though we haven’t talked any other way except

through facebook messenger, she has helped me in so many ways. She was the first person

I’d ever connected with who not only shared having a muscular dystrophy diagnosis, but

the same rare form. Talking to her made me realize for the first time ever that I wasn’t

alone. There was actually someone else out there who knew exactly how I felt. Don’t get me

wrong, I know there are so many others out there. Her story makes space for mine. Seeing

someone else navigating similar challenges with grace, honesty, and faith has encouraged

me to do the same. She reminds me strength looks different here. She has helped me feel seen. There is something special about being understood without having to explain every

single detail. Her story has helped me accept my own and given me the courage to share it

too.

 

What is your greatest accomplishment to date and why are you proud of it?

 

My greatest accomplishment would definitely be pregnancy, birth by c-section with

Bethlem Myopathy, and parenting Eliza. Of everything I have EVER walked through with

this disease, my greatest accomplishment is carrying Eliza and becoming her mom. Why?

Because my body wasn’t built for ease. Pregnancy brought so much uncertainty-pain, extra

fatigue, mobility changes and challenges, fear of how my condition would affect her and

me. Every week felt like a milestone. Every step was an act of endurance.

I’m proud because I did it with a body that fights me daily. I didn’t let fear stop me. I kept

going for her-even when I was scared, hurting, or exhausted. I’m proud because now I

parent a child who shares this same condition, and I do it with honesty, gentleness, and

love. I’m proud because I know how hard it was and I did it anyway.

And most of all, I’m proud because I didn’t do it alone. Jesus carried me through every

moment I thought I couldn’t. And now I get to carry her with His help and more gratitude

than words can hold.

 

What is the most frustrating thing about living with a disability?

 

The most frustrating thing about this disease, for me, is the feeling like I should be able to

do more when I know that I am not able to. Grieving the gap between what I want to do

and what my body lets me do. Carrying guilt for not doing more.

 

The key to self-acceptance is…

 

Realizing that I don’t need to earn worth through strength, independence, or productivity.

That my body, even with limits, is not a mistake. Jesus wrote my DNA. He knew before I

was born that I would battle this.

Realizing that both grief and peace can exist together. It’s okay to grieve the person I

thought I would be or what mobility I have lost. I have peace knowing I am who God made

me to be.

Self-acceptance has looked like stopping the comparison game. Like making peace with the

fact I can’t do what others do, and that’s not a failure-it’s just the reality of my body that

functions differently.Most of all, self acceptance has come through faith-through believing that God didn’t overlook me when He made me this way. That I wasn’t meant to be someone else. I am still whole, still called, and still capable of living with purpose.

It’s not about loving every hard thing but loving myself through it. And trusting that even

with my diagnosis, I am exactly who I am meant to be.

 

For more on Sarah and her daughter’s journeys with Bethlem Myopathy, you can find her on Instagram @mama_me_and_myopathy. She posts educational and real-life content on what daily life is like living with Bethlem Myopathy and raising her daughter who shares our same disease. Her content is truly a gift to our community.

Thank you. Sarah for sharing your touching and incredible story. You are indeed, Humbly Courageous!💚