
My scars help to narrate story.
Every soul has a story. Everyone has experienced pain, whether physical or emotional. Everyone has gone through something that has changed them. Everyone deserves to be heard without judgment.
Born with the most common form of dwarfism, achondroplasia, I never wanted my different-ability to define me. As a young child, I promised myself I would go through life being happy and proud of who I am, never letting the actions or words from others tear me down. Wishful thinking. For me, being ‘different’ has been difficult at times, yes. Judgements passed by others can cut deep. But I’ve also come to learn that I am far more than my physical body.
Early on in life, I had several complications characteristic of my form of dwarfism. Surgery was in my immediate future whether I liked it or not. At the age of twelve, after my options had been weighed, I made the decision to go through with a series of surgeries known as extended limb lengthening. It was a shot in the dark, I didn’t personally know anyone who had ever gone through any form of extended limb lengthening before but my heart told me that it was the right decision for me.
Four years later I found myself standing thirteen inches taller, a whole lot straighter, experiencing minimal pain and totally independent. My world had changed for the better, and it wasn’t just because I was taller. The journey changed me. After I graduated high school, I chose to spread my wings and flew as far as I could from the nest to fully embrace my newfound independence.
Once I graduated college, a new journey began. Writing became an outlet and a simple way to keep friends and family updated on the path I was walking. Thus, the beginning of ‘Little Legs, Big Heart.’
As I have continued to share my honest journey and grow as an individual, my support system has also grown. Everyone I have come to know, the experiences I’ve had and the challenges I have overcome are undoubtedly the reason I am the woman sitting here sharing her light. One of the most incredible aspects of this life has been the realization that I was put on this earth to help others who need the reminder that beauty does not exclude, it includes. Beauty is being you. Beauty is for all of us.
Living with dwarfism is a lifelong journey and the consequences come with the territory. At the age of twenty nine, I unexpectedly lost feeling and sensation in my legs. The pain that rattled my soul suit (my fancy term for human body) would not have registered on the Richter Scale. After multiple doctors visits, I was diagnosed with spinal stenosis and told to do physical therapy. After a year, my pain had worsened and I could barely walk. By the time I found the man who would essentially save these little legs, I was paralyzed.
Life is short and so are my legs. Here’s to accepting life as it unfolds, persevering challenges and growing from the experience.
Hi Kristen,
My wife and I just had a son who was diagnosed with achondroplasia.
I’d love it if you could email your thoughts on raising a child with achondroplasia. Maybe share some things your parents did that were helpful or maybe not helpful.
We are trying to learn all we can and get connected to as many people as possible. We want our son to have such an amazing life!!!
From,
Mike
Hi Michael,
Thank you so much for reaching out. Please email me at littlelegsbigheart@gmail.com and we can connect that way! Have a great day!
Hi Kristen,
I have a practical question: I am teaching kids yoga in schools and just had a 7-year old girl sign up who has Achondroplasia. Her mom asked me if I could adjust some poses for her…. As this is the first time I have a student with Achondroplasia, I wanted to know if you have some pointers… I am sure she knows her body and what she can and cannot do, but I really want to be on the safe side.
Thank you so much!!!
Sabine
Hi Sabine! Thank you so much for reaching out. And how wonderful, I love hearing that this little girl is doing yoga. I think the biggest thing would be to stress that it doesn’t matter what the poses look like in comparison to others. Everyone’s yoga is different. Allow her to explore what feels good and if there is a pose that doesn’t work, modify. Keep me posted on how all goes!
Hi Kristen, really nice to read your blog, I’m also have the condition and considered the operation as a child, but my family chose not to go ahead with it. Going through quite a journey, I work as a psychologist in prisons, I think if it wasn’t for my height I wouldn’t be doing what I do and see the difference I can make in others lives, it’s only been recently that I have been able to talk about my height, the stares I get and how it effects me, I have really blocked it off, which is no longer helpful. Thanks for sharing, sunil
Hi Sunil!
That is wonderful to hear. Vulnerability can be so difficult and I hope that you have also found it rewarding. Thank you so much for reaching out. Big hugs!
Continue your positive attitude and follow your dreams.