Up Front and Personal

Two Years Later, the Pain Is Still Raw

by Stefanie Gutierrez

My daughter died in September, 2012, just weeks after celebrating her fourth birthday. The second-year anniversary has just passed. Whereas the first year was a dreaded year of firsts – Christmas, birthdays, everything, really – the second year I found myself going through it in a new way. Changing grief – not diminished – but still raw.

As different as this has become, the fog never completely parts. Moments of genuine happiness inexplicably become more emotional and sometimes frustratingly complicated. There are bursts of sunshine and my laughter is loud, but I never experience moments of true joy without the immediate question, “Am I allowed to be this happy?”

I used to keep a blog. It began when I wanted to chronicle our family adventures when my husband Manny and I were expecting Anna, our second child, who would soon join her big brother Gabriel. Within months after her birth in July, 2008, I would instead chronicle her regression from a healthy babbling baby to one who could no longer speak, who went from eating Cheerios to needing a feeding tube.

The disease we were fighting was Rett Syndrome, a rare neurological disorder that incudes the symptoms of cerebral palsy, epilepsy, Parkinson’s and autism, all in one child. I blogged about treatments, therapies, quests for cures and how we as a family were absorbing the shock of the diagnosis and then the 24/7 caring of a severely ill and disabled child. When Anna died, my chronicle of life, as I knew it, died too.

I lived through the nightmare of every parent’s worst fear. Diagnosis, treatment and then death. To watch Anna suffer was to walk every day with Mary on her walk to Calvary. To watch Anna die was to completely surrender to a will greater than mine. And to outlive her, to wake up every day and continue, despite indescribable pain and heartache, is to survive.

There is no handbook on how to grieve the loss of your daughter, and there is not one on how to keep it together in front of your grieving son, whose memory is sharp and remembers saying goodbye to his sister for the last time, or how to support your husband who is also unsure of how to support you. At the beginning and ending of every day, you do not feel like a normal person. You feel like a shadow in a life you were not supposed to have. And somehow, you cope and learn to live with the pain.

As life without her physically present continues, I know that I am allowed to be grateful. Knowing and loving Anna, with her intelligent eyes, wide smile, brown curly hair and contagious laughter, has changed me forever. There was Anna, here on Earth and in my arms. And then there was Anna, gone, in my arms.

Now my arms hold my two guys, Manny and Gabe, and Anna holds all of us, in hers.

Stefanie Gutierrez is the press secretary for the Diocese of Brooklyn. She will join other parents who have suffered the sorrow of losing a child who has died from miscarriage, stillborn, abortion, accident or disease at any age, at a Remembrance Mass on Oct. 15 at 7 p.m. at St. Saviour, 611 Eighth Ave., Park Slope. All are welcome and invited to call the parish at 718-768-4055 for additional information.

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