Tuesday, July 27, 2010

My son has Down syndrome, what does this mean?

As Ethan nears a year old, I go back in my thoughts, to those first few days back home from the hospital. As the meds wore off, as physical pain set from my c-section, and I could think more clearly. At least I thought it was clearly.

Santiago would be away dropping the kids off at school, taking Ethan to his parent or running errands, while I rested at home. Little did he know I wasn’t resting. Instead, I was breaking down. I was crying with all my might. Those tears were so hot and they burned, they burned the entire way down my cheek, unto my chest, onto my pillow. They could have burned the sheets on my bed. I cannot begin to tell you what the pain felt like… The pain was so immense. It felt as if something was being ripped away from inside of me… my heart maybe. It wasn’t a quick swift motion of my heart being ripped away, it was a slow, digging, unbearable sharp sensation. Intense. I sobbed as if I was gasping for my last breath. I never thought I would ever feel anything else but pure misery, hate and resentment. It might as well had been my last breath.

My son has Down syndrome. MY SON.  Is this a dream, is this really happening? Is this a joke? Because this just cannot be happening. This is just not real. This happens to “other” people, not ME. What does this mean anyway, my son has Down syndrome?

I sat there and every negative thing crossed my mind. My LIFE is over. No more vacations for us. No more going out in public, because people with such disabilities are not welcomed in public. We would have to live locked up in the house. We would live an isolated life. Here it is… my 28th birthday a few weeks away, and MY LIFE is over.

Well guess what.. it was the end of my life.  It was the end of my life as I knew it.

But in return a new life emerged.

My son has Down syndrome, what does this mean? It means, I was given another chance in life, to live the life as I was intended to live.

In this new life, there is a happy joyous woman. With a deeper connection to her husband, her children and most importantly God.
Less selfish and more forgiving. Less judgmental and more accepting.
This woman, smiles more, laughs more, and cries more, oh, does she cry! But she cries at the beautiful things in life, because OH MY goodness, are they beautiful. The beauty in things, the most simple things, have never been so obvious before. These happy tears, they feel so good. They are what rain fall feels to a dry cracked ground. So welcoming and so relieving. Just as the rain drops roll into the cracks, and quenches the grounds thirst, these tears roll into the cracks of my heart and soul, quenching my thirst for life.

This other woman that feared so much, is gone. And I am glad that she is gone.  I don’t miss her. She was not worthy of this new life, or this amazing little boy, Ethan.
Ethan , deemed so imperfect by society, that he is far past perfect in reality. So perfect, it moves me! It moves me the way earthquakes shake the earth, with so much power and fierceness! So fierce.. just like Ethan, just like God intended Ethan to be. He is the earthquake in my soul. Strong and fierce, and drops me to the ground. As I drop to the ground, I am reminded of why I am on the ground, on my knees. I look up and I thank the Almighty Lord.

Ethan is the roots of my being… He keeps me grounded and connects me to God.
My son has Down syndrome, and that is what it means.


  1. Erika. You couldn't have put this in better words. It is very touching and most definately God created Ethan as perfect as he could. And that smile on Ethans face just steals everyones heart. He is amazing and so are you. ;)

  2. I love this, just perfect!

  3. Beautiful, absolutly BEAUTIFUL!


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