"Sam's Mom", "Ma", "Mama", "Mommy"......Since 1993 when at thirty-two weeks gestation, our only child came into this world, that is who I've been. I have to admit it took some getting used to, feeling like the former me no longer existed. I was cast into a new role, a new normal. A life that included words such as Partial Trisomy 5q, and craniosynostosis, when I was far more comfortable with the likes of ranunculus, delphinium and Dom Perignon.
It grew on me, my new title, and I wore it like a badge of honor. Although Sam was not able to speak, and his sign language was limited, on occasion, with great effort to my delight he would exclaim "MA!"
Knowing that his language skills would be limited was one of the many bitter pills I would have to swallow, but I never stopped trying, hoping to hear his voice....to hear him say my name. I remember vividly while in the presence of my husband's mother, I was repeating "Mama, Mama" over and over trying to get Sam to say it back. She looked up at me and said, "You know baby's first word is usually Dada." I replied that I really didn't care if Sam's first words were "fuck off", it would be the happiest day of my life. He never did say those words, or any others.
I had nearly twenty years of being known as "Mommy", and with one final breath it ended. Everything I had become.... full time caregiver, advocate, nurse and Mommy, the title of which I was most proud, ALL GONE. I long to hear my husband say "Go ask Mommy", or pretend to be "Mean Mommy" just to hear him laugh.
I know that I will always be a mother, Sam's mother, but for now I can't remember to move clothes from one machine to the other, let alone know who I am......or what I want to do.
Deborah
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