I was born in New York on a snowy day to a beautiful courageous mother, who did not know her daughter was about to be born with a rare condition called Recessive Dystrophic Epidermolysis Bullosa (RDEB or EB).
Though my skin seemed “normal” only having a bruise on my shoulder and a blood clot of the tongue, doctors weren’t alarmed, until they foot printed me. The ink was somewhat sticky, causing the foot to stick to the paper, lifting the skin and spreading huge blisters up my legs. Doctors and nurses rushed me to the NICU immediately.
My mother awaited several hours to find out what was wrong with me. Doctors didn’t have an answer for her. She had to meet with me covered head to toe with sterile hospital scrubs, mask, gloves, etc. I was drugged with morphine constantly to help with pain, as I screamed for hours.
The hospital transferred me to another hospital in New York that had a specialist who announced verbally I had EB before even proper testing; after I was tested, they finally confirmed RDEB. My mother, who expected to have a healthy baby girl, had to completely relearn how to care for a baby. My mother researched day and night to make everything at best for me. She worked at a large company, covering long hours, plus coming home tending to my wounds, long baths, bandages, extracting blisters, cutting off dead skin, moisturizing, wrapping—rinse and repeat on a daily basis (sometimes three times a day). She felt she wasn’t giving me enough time, leaving her good job, retired early, and blindly moving to California for me and only for me.
That is one of the most loving things anyone has done for me. Some people put down my mother for “throwing” her life away. What they don’t know is the quality time she gave me, kept me going, kept me alive and well. Not to say there aren’t awesome moms out there that can work and care for their child with a disorder, my mom felt the strong need to be there every day. She never let me dwell on the bad about EB. EB is a part of me, but it isn’t who I am or can be.
Today, I am married to my best friend and husband who cares for me for who I am. A man who does my dressing changes,
“When I look at your skin, I don’t see your wounds and scars. You’re beautiful.”
EB is not contagious, nor will it kill you if you look at us or talk with us. I do not mind educating individuals who maybe ignorant about EB. It is important to spread the awareness, day by day. There is a lot of cruelty in the world. I have had to witness parents turning their children away quickly away and running, as if my deformities will scar them for life. I have to live with the scars, not them. Instead, parents’ should tell their children differently and politely ask anyone with a disability to inform them nicely and read up on it.
I thank God for my mother and thank you mommy for loving me so much and treating me like a human being, not plagued with a disease. Thank you husband for sacrificing so much to be with me, care for me, and love me unconditionally. Thank you my friends’ for enduring my moments of complications of EB, but never do you run away and leave me.
For each countless scar inflicted upon my skin, I am rewarded with a beautiful blessing each day that fuels me to keep going. You will get a sneak peek. I am a rare piece of God’s artwork… almost like a Picasso — and I like it.