0 In Dwarfism

Understanding Dwarfism- My Siblings’ Story

Last year for Dwarfism Awareness month I told our story about living with dwarfism, the statistics, hardships, and joys.

This year I wanted to tell you a new story.

The stories that aren’t told often, but felt always. The beautiful effect differences have on someone’s heart! Have you ever met a person different than you and walked away changed a bit? Maybe you learned something new, maybe you understood more about life from someone else’s perspective.

This month I am going to tell stories each week of people that have been effected by dwarfism, highlighting how beautiful differences are.

To start it off this week I interviewed three of my favorite people in the world, my wonderful siblings!

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Mackenzie (left) is the oldest and our fearless leader when it comes to new life stages, she pioneered college, marriage, and motherhood and now provides so much gracious guidance as we go through each season. She is an amazing mother to my favorite niece and nephew and wife to Andy!

Anna (right) is also older than me. We are closest in age and have walked through many life stages together. Most recently we both got married this year! Anna has the best sense of style, I often steal her clothes, taste in music, and cooking skills. She is a wonderful listener and asks all of the right questions.

Blake is my younger brother and puts up with all of his sisters, with lots of love and grace! We often joke that he has four mothers! He is quiet but very wise, kind, and compassionate. His limitless passion to pursue the things he loves inspires me to follow my own dreams.

 

1.  Growing up was there a point where you realized that I was different? Do you remember that time?

Anna- I don’t remember ever a point at which I felt that you were “different” I don’t have a recollection that mom and dad ever sat us down and was like “Hey, so Kate has dwarfism.” It was just who you were and didn’t need any explaining almost. I knew functionally you had to have things adapted but other than that, you were seen as no different to me than any other little sister.

Mackenzie- I am sure that there was a time that I noticed you were different when we were young but I don’t have a specific memory about it.  But I do have a distinct memory of going to a Little People of America conference as a family when I was probably in grade school and it struck me that everyone there looked different.

You didn’t look different to me, you were just my sister.  I knew everything about you- your likes, dislikes, personality quirks, what made you happy and sad.  It was so shocking that even though you had such physical similarities to everyone else, you looked drastically different to me.  That’s when I realized the power that a personal relationship has on dispelling curiosity, prejudice or judgment.  Once we establish a relationship with another, everything else falls away and we are just people.  It doesn’t matter our physical appearance.  We are all just humans, amazing beings created in the image of our loving Father.

 

2. Do you remember mom and dad ever explaining to you what dwarfism was? How did they do it?

Blake- Honestly I remember mom and dad telling me to be gentle when playing with you girls in general but the conversations I remember having were about going to Baltimore with you for surgery rather than actually explaining it. I was very young for most of this.

Mackenzie- I don’t have a specific memory of Mom and Dad explaining dwarfism to me.  I remember that we had a book about a little girl who had achondroplasia that explained things in a child appropriate way.

As I got older, my curiosity grew and I remember having more conversations with them and doing school projects about dwarfism in order to understand it more fully.

 

3. Did your friends ever ask why I was small? Do you remember what you told them?

Blake- Not too often because they knew you already or our families were friends so their parents would have explained rather than myself doing the explaining.

Anna-  Yes I have had that question before, mainly from children, since most adults have the knowledge about dwarfism and people who are short-statured. I think I just explained what dwarfism was and that it really just affected your limbs as being shorter without any other affect on lifespan, cognition or social aspects. That seemed to work for most people. 🙂

Mackenzie- We grew up in a smaller town where everyone knew you so I don’t remember many conversations growing up about your difference.  It wasn’t until I went to college when I had friends that were unfamiliar with our family, that I got questions about you.  Usually someone would ask me a question after meeting you and they would say something like, “I didn’t know your sister was small.”  It wasn’t something I mentioned because it isn’t what I think about.  Your dwarfism is a piece of your story but it isn’t who you are and isn’t something I use to describe you.  I would usually tell people that, “Yes, she had achondroplasia which is a form of dwarfism.  She has a average-sized torso with shorter arms and legs.  There is a spectrum of health issues associated with the condition and she has had some issues and surgeries.  She does everything that I do just with modifications even skiing, driving, and biking.”  Those were some of the basic questions people had and once they understood, it wasn’t about your achondroplasia anymore.  I really have no memories of my friends treating you any different than Anna or Blake.

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4. Did you ever notice people staring as a child? How did that make you feel?

Blake – Yes I do.

It made me mad when I was young. There had been time where I remember kids yelling from a school bus when we were going to Runza, or people staring at Husker games. I wouldn’t know if I should say something or act like they aren’t there.  There had been times where I’ve wanted to pull my phone out and start taking photos of them to see how they like a stranger approaching them like that.. I still don’t know the best thing to do in such a scenario.

Anna- I do really remember that a lot, where people would give you long stares where it was beyond obvious that people had never seen anyone with dwarfism. You had seem pretty unaffected by it, but it would upset me at times and feel disrespectful. I felt like you were instantly the center of everyone’s attention, and you had to assume this role without even asking for it. One funny thing is that truly everyone that meets you remembers you, we’ll be out somewhere and people will come and say hello to you. I’d ask who they were and you’d respond with “I have no idea.” You kind of were a semi-celebrity in Fremont, whether you wanted to be or not. I think a lot of times you didn’t want to be, and I could see that it would upset you. But look how far you’ve come! 😉

Mackenzie – This was one of the hardest things for me to deal with.  As the oldest, I feel very protective of all of my siblings.  It always took me by surprise because I don’t think of you as different so when I caught someone staring, it was a reminder of your physical difference.  When I was younger, I would often get angry.  Angry that someone could possibly inflict pain by something that they said or did.  I also think I felt angry because I felt helpless.  But as I have gotten older, I have learned to turn that anger into compassion.  I have learned to show compassion to those who are acting out of ignorance and try to make change through education.  I still don’t have tolerance for meanness, however, and my protective instinct will come out.  I have learned so much by just watching how you have traversed it all with grace and beauty.

 

5. Is there anything you would tell a sibling in the same place that you were 20 years ago? 

Anna- If I were to tell a sibling in my place 20 years ago I would say a few things. The fact that dwarfism was a part of you and we didn’t talked much about it I think was both good and bad. It was good because it normalized things with you, things were just naturally adapted for you and at the core you were no different.  However I think the fact that we didn’t talk about dwarfism much was a hindrance. I think over those tough middle and high school years and I don’t feel that I was sensitive enough to the fact that you were different.  Not to assume that all of your struggles in middle and high school were related to your difference, but I think it impacted you more than I understood. Sometimes I felt uncertain how to broach that topic with you and it almost felt weird to talk about. I knew you were going through a lot in high school and I didn’t always feel like I was a great sister to you in those years. If I were to do it again, I would engage those conversations about your difference, not ignore or neglect them but talk about it and to learn from you.  I knew that I would never be able to fully understand or relate to you regarding dwarfism, but I at least wanted to talk about it more and know how it impacted you.

Mackenzie – I would tell them that God has blessed them beyond measure.  Our God is the Creator and he chose us to be made in His image.  What an honor!  But yet, he didn’t just create us all the same, like an assembly line, but He created each of us intentionally and personally with great care and detail in His abundant goodness and beauty.

Having a sibling with a disability is a wonderful opportunity to witness more of the fullness and breadth of the creativity of our God.  While your sibling with achondroplasia has obvious physical differences that make their uniqueness more apparent, we are all built with our own individual differences.  Celebrate those differences!

 

5. Do you remember my health issues as a child and mom and dad having to take me to the hospital or travel for surgeries? Do you remember that effecting you in positive or negative ways?

Blake – Yes! I remember the times of you all having to travel to Baltimore. Again I was really young during the majority of your surgeries but I just remember how taxing it was on all of you.

Anna – One year I went to the LPA conference and it was a great experience. It is a unique place where you (as average height) are in the minority. It was so interesting to experience just an ounce of that. People with dwarfism are a minority group and that alone influences a person so much. Since I am not in the minority, it is important to recognize those that are in the minority, welcome them and appreciate their differences.

Mackenzie – I remember your trips to Baltimore for doctor appointments vaguely but I don’t remember it having a great effect on me.  I have more vivid memories of your later surgeries because I was in high school and college.  I remember visiting you in the hospital and being worried and burdened by what you were enduring.  I am ashamed to admit, however, that I think I was too self involved to even fully understand the weight of what you were experiencing.  Now being a nurse and an adult, I have a greater understanding and appreciation for all that it would have entailed.  I am in awe of all that you have physically dealt with and I am inspired by your strength through it all.

 

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6. Is there anything else you would want to share about how awesome I am… Just kidding but your experience having a sibling with a disability?

Blake – I have appreciated having you in my life for so many reasons.

I do feel as though you have had an impact into me facing life and meeting others with the understanding that we all come from mixed backgrounds and make ups. Everyone is perfect in their own imperfect way and deserves respect no matter what the case may be. I feel lucky to have you as my great sister!!!”

Anna – Overall having you as a sister is the most normal thing. It truly is no different, but like you have said before you’re differences are not only internal but external. We are all so different, however when we have differences, like dwarfism, that are quite different than what is ‘average’ it is most important to talk about and ask one another about those differences. We can all develop bias and prejudices. Awareness, curiosity and courage will address those.

Mackenzie – Well, you are awesome! 😉 But seriously, although I don’t think of you as different, the truth is that you are physically different than me.  You have encountered many things that I have never had to deal with and experienced challenges that I cannot pretend to fully understand.  I don’t think I always do a good job of expressing that I see you and I admire you.  I see you when you have to deal with stares in public, when you have to adapt a seemingly easy task or when you are dealing with physical pain. I admire your strength in the face of adversity, your boldness that desires to create change, and your kindness towards others.  I say this all to remind others that it is important that we recognize and empathize with the things that others are encountering in their lives, especially when different from our own.  And also to cheer them on and call out their greatness.

 

This was such a special interview to do with my siblings! I am so grateful for their honesty, love, and participation!

We would LOVE to hear from you! Do you have a sibling with a disability? Have you ever felt the same as Mackenzie, Anna, or Blake? Or do you have anymore questions for them? Comment below or email me at katherine@kateandbraun.com

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