“mama”deus | miami photographer

the other day i heard the song “Amadeus, Amadeus” and it reminded me of how i always changed the lyrics to “Mamadeus, Mamadeus”. just thinking about it makes me smile and think of my mom.

(gloria maria portela | cuba)

8 years ago on June 1st, 2003 i woke up to a reality that i always feared. lupus won.
My mother was diagnosed with lupus when I was in 6th grade but I never really understood what lupus was. People would ask me and i would answer, “it’s an autoimmune disease, it’s kinda like cancer, you treat it with chemo BUT it’s not cancer”.  How did i know it was an autoimmune disease? Cuz i read it on a pamphlet my mom had on her nightstand. I still have it. I can’t throw it away.

Well Lupus among other things eventually caused a debilitating stroke that left my mom partially paralyzed. At this point in life I was 13. I never understood the severity until many years later that my mom could have passed away the day she had the stroke. With the grace of God she recovered and spent months in rehabilitation doing therapy to be able to walk, write, + function to the best of her abilities. 

I can sit here and write about what an incredible mom she was BUT everyone’s mom is incredible.
I can tell you that she was beautiful BUT everyone’s mom is beautiful.
I can tell you that she was strict. She always said no before I even finished asking her if I could go out anywhere…..
I can tell you that I never put on enough makeup according to her…… She won a beauty pageant.
I can tell you that when she laughed she had the prettiest teeth and yet she covered her mouth……I laugh and I look like a horse. 
I can tell you that I ALWAYS wanted people to tell me I looked like her……..my sister could be her twin.

My sister and I were lucky enough to have had a “second” chance with my mom. After 13 my mom was with us until I turned 25. I was able to get to know her as an adult. I was able to ask her questions about things a 13 year-old would have never asked. I was blessed to have that time and truly not take it for granted. My mother was all the things a mom should be: pretty perfect!

I wish she would’ve met my frank,  my joey and my “nana”. I wish she could’ve gone shopping with me for baby clothes. I wish she could still tell me that I’m not wearing enough makeup.

Mamadeus, you are much loved and greatly missed!

Lupus Foundation

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