My Little Light

When Gabe was born, I started a mini-journal for him. Only 30-pages thick, I've written in it only a few times, leaving room for those "big" accomplishments like his first day of kindergarten, high school graduation, college, his first big job, his wedding day. I look at the blank pages waiting to be filled as we live our life with our beautiful, intelligent, fun-loving little boy and we aim for those big dreams. These dreams are what we want so desperately for our children.

When Anna was born, I bought her a journal. While there is one letter in there, written after she sat up for the first time when she was 6-months, the rest remains bare. I hoped to fill those pages one day with memories of our difficult past, hoping that I could joke how she had a slow start but "to look how quickly you caught up!" I haven't written in it because it was more of a gift for her. For her at her high school graduation. Or college. Or her first big job. Or her wedding day. Or the birth of her first baby.

This week has taken that all away.

Our gift from God was a baby girl, after three miscarriages. Our gift was this new life. A wonderful miracle sent down to us. I remember when she came home from the hospital, Manny and I adoringly looked over her and asked, "We wonder why she chose to come into this family with this little apartment in Queens, New York?" We joked that God went to his flower garden and asked which one wanted to come next and she raised her hand and said, "I want to go!" We were so happy to have a new baby. A "King's choice!" as the Brits call it. One boy, one girl.

Now, after a fairly decent two days of coping and accepting, I fall back. Sorrow overwhelms me. It is profound. It came to Manny and I - truly came down and swallowed us whole - on Wednesday, Feb. 24, after we left the geneticist. We knew on Tuesday what was coming. But nothing in the world prepares you for it. It was a cold, rainy winter afternoon when our world was uprooted, north became south, and we and those closest to us were turned on our heads. My mind tried to be matter-of-fact. I tried to rebel against this syndrome and I still try. I pray my efforts are not in vain. My heart protests. I almost feel on the edge of despair. I fight it, or else I feel I may die of heartbreak. This dreadful diagnosis has firmly taken our dreams for little Anna and thrown them away.

Rett Syndrome will become our journey yet I fear for its hardships. Imagine the symptoms of autism, cerebral palsy, Parkinson's, epilepsy and anxiety disorders. All in our little girl.

Is my hope alive? Where has it gone? I am transported back to nursery bible school, when all the kids got in a circle and my Aunt Rosemary led us in "This little of mine... I'm gonna let it shine... This little light of mine... I'm gonna let it shine..." My hope is an unsteady flicker.

I won't let it die, not for Anna. I won't let it.