I thought I was prepared.
I knew the odds.
I expected that the dice would win.
Hold my breath. Pray every moment of every day. Wait for what feels like forever.
Dear G-d, please let it be negative. How will I cope if the answer is positive?
The answer came to me on the first night of my honeymoon, a night most couples spend in romantic bliss.
I cried myself to sleep in the arms of a caring and loving man.
He did not blame me. I blamed myself.
He was thrilled to be the father of a son.
I was sad and terrified at what a positive Fabry diagnosis meant, because I live with it myself.
The sun rose the next morning and I was still me. The baby inside of me was the same child that had been there yesterday, only now I knew his future. The tears welled up inside of my heart. I had failed him. I had failed everyone.
I was not prepared for these feelings of failure.
Seventeen years later, I do not feel failed.
I am not failed, neither are my sons.
I have rolled the dice twice, and both times the dice won.
I am the winner. Fear did not win.
The tears you cry because the news is not what you expected — those are fine tears to cry. Cry them. You will need to make room for the strength needed for the hard days that come. The days when your child is in pain or when others do not understand the disease. The days when you fight to keep up or fight to make life normal. The Tough Love days of saying “yes” to the nurse when they ask permission to look for a vein in your child for a third time. Cry the tears now so you have room for the strength you will need to get through the hard days. When you are in those hard days, the marathon days, and there is no finish line in sight, love your child and have a friend or a coach to love you.
I cried a thousand tears of pain at what I thought I had done. I understand now that those tears were just making space and building muscle for the strength I would need on the hardest days — the way all mothers need strength on hard days.
I am blessed with the perfect boys who were meant for me.
I have cried a thousand tears of pain.
I have cried a million tears of joy.
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