What He Always Does….

It happened fast and sudden like accidents usually do. I was relieved that he was ok, but the mother in me was still a bit in shock and feeling overprotective. He had such confidence and was so calm while my nerves and adrenaline were pumping wildly. But, I was also amused and proud. Amused by the snow still stuck to his ski goggles, helmet, and shoulders from the fall. I was proud because my little pint sized man had expressed wisdom well beyond his years at the most unexpected of times.

I always ski behind him in case he falls, which is a rare occurrence. If he looses his balance or feels something is wrong he usually just kinda plops down. I guess that is the beauty of being four. You don’t have far to fall. But this time was different. This time, as I skied behind him and watched him practice his turns, I was shocked to see him suddenly flip. It was a proper front flip that catapulted his skis over his head. His skis popped off and went flying and he landed flat on his back with a hard thud. I gasped and skied down to him. “Baby! Are you ok!?” I asked with panic in my voice as I approached. He did not answer immediately, which only heightened my fear. A very long two seconds later I was standing over him and I was surprised by the huge smile on his face. “Are you ok?” I asked. He just nodded yes while looking at the sky, still grinning.”Give me your hand,” I said. But he did not accept my extended hand and just laid there. “Are you hurt?” I asked worried about him not wanting to move. I was met with no words as he shook his head no. “Can you sit?” I asked. I was relieved to see him immediately pop up. “Holy cow mom!” he said giggling, “That was a good one!”

Now the annoying grown up in me kicked into high gear. The part that wanted to understand how this could have happened. The part that needed to have a full assessment of the situation so I could do my best to prevent it from happening again. I began asking questions and he patiently sat and answered all of them. My heart was still pounding. Slowly my sense of panic began to wain and I could not help but notice the stark contrast between what we were feeling. While I was visibly worried, he was cool, calm and collected. My voice was shaky and his was giggly. My adrenaline dump was due to fear and his was due to a sense of adventure. Somewhere between me asking, “Did your feet cramp?” and, “Did you loose your balance?” he interrupted me, looked me in the eyes and laughed at me. “Mom,” he said calmly and reassuringly, “sometimes we just fall. Just because. For no reason.”

I stared at my little boy and just smiled. He was right. Sometimes accidents just happen. Sometimes little boys just fall. But what he didn’t understand was that he wasn’t just a little boy, he was a little boy with dystonia. He had no idea how terrifying it was to watch him climb and play and ski. I knew what he did not. I knew his body could stop working at any moment. That excruciating pain was always lurking just a moment away. He did not know that I live in constant conflict, torn between protecting him and allowing him to have normal experiences. With dystonia, normal activities can go wrong in an instant. Dystonia makes joy turn to fear and turns laughter into tears. When something goes wrong I worry that I made a poor judgment call in allowing him to participate. When I force him to sit out, I worry that I’m teaching him to let his disorder hold him back. It’s a conflict that can never be resolved.

Hearing his words made me realize that I was asking questions not to prevent falls, because I knew they were unpreventable, but because I wanted to know if it was my fault. Was it a bad decision to let him do just one more run? Was it a bad decision to allow my child with dystonia to strap skis to his feet and slide down a mountain? I wanted to know if it was my eagerness to let him feel normal that led to him flipping head over heels down a mountain.

Standing there looking at him it occurred to me that worrying about him falling doesn’t matter because he will always fall. Trying to prevent all accidents should not come at the expense of life’s experiences. Sure he will need to learn how to assess situations and take reasonable precautions, but more importantly he needs to learn how to fall, how to get up and how to live in spite of his challenges. What I really want for my son, more than preventing him from falling, is to allow for him to truly live. But the fact remains, he is a kid with dystonia. This is going to happen a lot.

I realized now the important part for me to focus on was not the events leading up to a fall, but the moments that happen after the fall. It’s the, “Now what?” the, “Where do I go from here?” that matters. It’s how he handles being down that is the most important.

I said nothing and just smiled at him as I thought about a way to impart these lessons on my four year old. I grabbed his skis and helped him up. He was giggling at all the snow on his mask and coat and my heart twanged at the mere sight of him looking and sounding so grown up.

“Do you need to rest a minute?” I asked. Again he just shook his head no. But, this time snow flew off his helmet and we both laughed. It was the first big wipe out he had ever had skiing and I was unsure of how he would respond. I didn’t know if he would be shaken and scared to go the rest of the way down. I wanted to use this moment to teach him about the importance of perseverance in moments like this. I thought heavily about the right words as I popped his bindings and lined his skis up for him. Struggling for the right words I asked, “Do you need anything?” His response hit me hard and I froze. Happily and confidently he said “I need to do what I always do when I fall down. Get up and try again!”

The smile on his face melted my heart and all I could think of to say was, “Well then, let’s go!” A minute later his skis were back on and he was cruising down the mountain again. Watching him race ahead, I was humbled that this beautiful human being was my son. I hoped that in life when he falls down he will continue to do what he always does…..get up and try again.

6 thoughts on “What He Always Does….

    1. My son has a severe case of a rare bleeding disorder so I really relate to this story. He is only 2 but I already struggle with not bubble wrapping him and being very purposeful in building his psych / social confidence by letting him be a daring toddler!! Check our my blog http://www.BlessedBlood.com. Thanks for your story helps us to remind ourselves there is a
      world outside of hemophilia


      1. Samantha, thank you for reaching out! I will defiantly check out your blog. I’m sure we have a lot in common. Even though the disorder is different, many of the parenting challenges are the same. Thank you for reading and I hope you keep in touch!


  1. Amazing! As a mother I could relate to your feelings so well. Just a week ago my daughter ran out of my sight and went close to the water near a beach. I was extremely anxious and scared. I kept asking her questions only because I wanted to know where did I falter. How did I not watch her and let her go all the way to the water? I realised later that things just happen and its the after that we should be concentrating on.

    Wonderful blog, I am so glad I found this and you sure have an additional follower from now on.


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