Courage Is Being The Best Mom I Can, Despite My Condition, Dystonia

| Olga, 29, Atlanta

Going to the Zoo with two kids might sound like a simple task, but it took courage for me to do it. I suffer from a rare condition called Dystonia since I was a child. Dystonia feels like you have no control over your body because all of the involuntary muscle contractions, making you look all twisted. My voice has also been deeply affected so it is hard for people to hear and understand me. Taking my kids out by myself that day was a challenge that I overcame and shifted my relationship with my family and myself.

Having a rare disorder: Dystonia.

 Ever since I was a little girl I was always saying “I love my life!”, and I truly meant it, I was always smiling, raising my arms up high, and loving every aspect of my surroundings and myself. Negativity wasn’t a part of me... I really loved being alive.

The first symptoms of Dystonia showed at a very young age when one of my legs started to turn in when I began walking, but I eventually grew out of it. Then, when I was 12, I had to use an orthodontic device to expand my palate, and that was when my voice changed drastically and I developed a condition called Spasmodic Dysphonia.

Being a teenager and having this condition made things difficult for me, I became very self-conscious. My leg started to turn in again, so life at school shifted. I quickly began to become an introvert and hide my emotions…resulting in losing my friends who didn't stick by me. I started to feel out of place in this unknown body.

I spent several years without a diagnosis. Not knowing how to respond when everyone asked me what was wrong was the most frustrating part. It was not until I married the love of my life and had my two wonderful children that a Neurologist gave me the missing answer…Dystonia. A disorder that has no cure.

Knowing what I had didn’t change things for me physically because the disease progresses no matter what, but it gave me peace of mind and I found a new treatment that helped me cope with the pain I was experiencing.

Finding out that there is no cure is scary. However, I am learning to live with it and looking for ways to make each day more manageable. But every morning, I would look at my beautiful kids and a voice inside me told me to stop the pity for myself. Now I need to be stronger than ever because I am a mom. ...A mom to two amazing kids and a wife to a husband who loves me for me.

I started to focus my energy on all the good that Dystonia has brought in my life. Everything happens for a reason. I was given this "gift" for a reason. Yes, there are days that are harder than others. But I have learned that on those days, I just have to be a little more gentle with myself and have patience because every day is a gift and I refuse to let the little things affect my life and my family.

 A wake-up call. Creating new experiences by myself.

Ever since my Dystonia started progressing into multiple parts of my body, I felt very insecure about the way I look and the sound of my voice. I also started getting tired very easily because of the involuntary twisting and muscles contractions.

So, the thing that led me to tell you this story started when my kids kept asking me to take them to the Zoo but my symptoms kept me from going out with them on my own. Thinking about them running into the busy crowds or the idea of people judging the way I looked made me imagine I would get too overwhelmed and freeze up while being there.

After spending months on my couch suffering from excruciating pain, I said to myself that I wanted to create experiences with my children, on my own. They wanted to go to the Zoo for a long time and when they asked I would always say things like “maybe tomorrow” or “maybe daddy can take you”. Now it was time to say “let’s go to the zoo, just the three of us TODAY!”

It took courage and it was worth it.

I was afraid to make this impulsive decision because of the possibility of being stuck in the Atlanta traffic with my twisting neck, the busy crowds, or losing my curious kids who love to wander around. However, once I stepped into the Zoo and saw the illusion and excitement in my kids’ eyes, all of my fears melted away.

When I was driving back I felt so empowered, proud of myself, and eager to go on new adventures with my kids. This day definitely changed things for us. Dystonia makes me appreciate every little thing, every experience, and every day next to my family that’s so filled with love.

I might look awkward to some people or be impossible to understand, but I know that with a smile on my face and kids by my side, I can do anything and enjoy life again! Even if it’s just those ordinary days...I can still make them feel extraordinary!

I’m not trying to be fearless and forget about my condition, I’m a mom trying to give the best of myself to my children.

If we can feel confident with our quirks, we are showing our kids that it is OK to be different. Because being different is a beautiful thing. My Dystonia has made me look at life in a whole new way. I feel joy in simple things like hearing my kids laugh, or dancing to my favorite song, or simply by noticing our flowers blooming in our garden.

I never take for granted my good days. Let us all celebrate our “flaws” and love ourselves “as is”. I deeply believe that I was given Dystonia for a reason. We all have our unique journeys. It is not put into our lives as a burden, but as a way to challenge us, to learn and appreciate this beautiful life.