How My Son With a Rare Disease Teaches Me There Is No 'Normal'


What is with our obsession to be “normal?” Go to a “normal” school, get a “normal” job, buy a “normal” house, have a “normal” marriage, birth and raise “normal” children so that they too can fit in and grow up to be “normal.”

I never had a problem with this “normal” dream. In fact, I shared in this dream and was living it for most of my life. I graduated from college, married my high school sweetheart, got pregnant, bought a house and lived the “normal dream” in a sweet little subdivision with a back deck for grilling.

Fast forward to today and we are far from that original dream of “normal” (though we still do have a grill). Our 6-year-old son has a rare chronic disorder called propionic acidemia and was recently diagnosed with autism. With the most beautiful of intentions, people will sometimes try to compliment us and say, “Luka looks so normal. You would never know there is anything wrong with him.” I’ve even caught myself saying. “If you met him, you would never guess what he has been through or that he is different.”

The programming to be “normal” and to make people comfortable and pleased by our own existence seems to be deeply engrained.

Our life no longer fits in a box. It never will. And neither will Luka.That is one of the many gifts he was born with. The challenge for me, as his parent, is to let go of what I thought our life and our son was supposed to be. To accept, to grieve and let go. Stop trying to force him into what I expect him to be or how I expect him to act. To put aside my own need and want and create a space for him to be and find himself.

This is messy and vulnerable work. It has forced me to know and face more of myself than I ever imagined, and I will forever be grateful.

Our son continues to shatter our perceptions of reality and what life is supposed to be. The only thing we know for sure is that we have so much to learn. He reminds us not to take ourselves so seriously. It is not our problem what other people think about the way we look, where we live, what we do or who we are.

As we do our best to create a nurturing space for Luka to grow and learn, we never imagined the space we were actually creating was one for ourselves.

This is my life’s work. For myself. For my son. And for others.

We are not striving to be “normal.” We aren’t even striving to be different. We are simply striving to be ourselves.

A version of this post first appeared on Authentic Living.

Getty image by prostooleh


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