SAUDADE DOS ANJOS

My daughter's name was Amália dos Anjos.

We named her after we learned that she had Down Syndrome, but when we still thought she would be our sweet daughter who we would raise. I figured we would call her Ama, from amar, to love. I wanted her name to reflect all the love we had for her, because those early days of knowing her genetic condition also brought so many other emotions, like fear, anxiety, and uncertainty.  

Dos Anjos is a family surname, my grandmother carries it, as does my mother, and many aunts.  It means "from the angels."

Amália dos Anjos; love from the angels.

Amália's namesake was also the famous Portuguese Faudista Amália Rodrigues. I grew up listening to Rodrigues's famous Fados and I was enchanted by her singular place in Portuguese culture.

After we learned that our daughter's condition was terminal, her name took on another layer of meaning.

Amália Rodrigues's Fados speak of longing, loss, and love.  In my grief, my daughter's name has come to represent all of those things but especially the Portuguese state of saudade.

Amália Dos Anjos.

Saudade Dos Anjos.

Her Days

HER DAYS

Sometime after Halloween, if people ask and I’m feeling up to it, I explain that winter is her season. It all began to unfold shortly before Thanksgiving and so, that year, the nights felt longer and darker.  Winter is her season. And since she was born in February, it is her month.

February is her month and these are her days.

Amalia was born February 9^th 2011 after two hours of pushing, twenty-four hours of labor, three months of desperate grief and sadness, and nine months of love and anticipation. I say that Ama’s birth made us parents, but the truth is, Ama’s pregnancy made us parents.

By the time she was born, Hawk and I had already been confronted with the most challenging decisions parents can ever face. By the time she was born, we were exhausted — and her birth was just the beginning. Our daughter lived for seventeen days.   

For me, her days were experienced as a concentrated parenthood.  Her father and I spent them simultaneously marveling at her perfect newborness while ferociously advocating for her needs and preparing to let her go.

These days will always break my heart. But I am learning to live with it. We are all learning.

Tomorrow, Ama’s Dad, sister, and I will go to the sculpture garden where we held her memorial. We will eat a piece of birthday cake in her honor. We will try to make it through these days.

POSADA

A year ago my street filled with pilgrims carrying candles and flowers. The pilgrims stopped at every house, singing the traditional songs of the Posada ritual.  There were instruments, and children, and babies, and a real live donkey.  Our block was filled with light and song and the spirit of the Christmas season.  It was beautiful and heartbreaking.

Our neighbor is a priest at the Catholic Church and he organized the celebration for his parishioners.  A week before the event he came to our home and asked if we would like to participate.  His group would stop at our house he explained and they would sing outside, asking if Joseph and Mary could find shelter here.  We would then respond “no” and they would move on to the next home.  This would continue, house to house until they would finally be granted respite at the last house.

We politely declined the offer to participate.

Our neighbors took part and on the night of the Posada, I watched from the window in what was to be my daughter’s room.  It was beautiful and heartbreaking.

I was seven months pregnant with my first child, my daughter, who was recently given the prognosis that she would not live.  The doctors told me that at any moment she could pass away, and if she was born alive, she would not live long.

Those days were dark. 

As I watched the Posada I felt a deep connection to the story of Joseph and Mary.  My daughter kicking my belly, growing, seemingly unaware of her illness, of her short time on this earth.  She was a baby growing and squirming and as real as any baby ever.

I would smile at her little jabs, and then sob because of the tremendous loss of her.  She was there, so real, so big, but unreachable, unattainable for me.  I had to love her, just to lose her.  Care for her, just to have her taken away.  I begged for someone to shelter me from the loss.  I begged for someone to take me in, wrap me up, and shelter me from what lay ahead.