Married in Sequined Slippers (Part II)

Happy Birthday, Mom!

My mother turned 28 on October 25, 1974. On that same day, she received a phone call advising her that her one-week-old infant was given two weeks to live. As a mother now, myself, I can only imagine how much her world sank around her. I had been diagnosed with Epidermolysis Bullosa Dystrophica at birth. The doctor that delivered me had seen one other case before in a set of twins. They died just after birth.

One month old, November 1974

On November 12, 1974, I was released from the hospital in Lake Charles, LA. I was kept under sedation for much of that month to minimize my movements and thus, minimize the damage I did to myself. They took me home to die that day… Or I guess, to live.

I was kept under sedation at home as well. I could not wear clothing, as the elastic and lace would blister and peel off my delicate skin. Diapering was also done precariously. Cloth diapers were the protection of choice, but could only be laid under me and not wrapped around my legs and waist. My parents could not pick up and cuddle their newborn whenever I cried, as that would have done more physical harm than the hug would have done good. I couldn’t be held under my arms. I had to be carried carefully; one hand under my rump and the other under my head, with a soft barrier, like a towel or blanket between my skin and theirs. Even then, sometimes that wasn’t enough to prevent the inevitable damage.

By the time I was six months old, I was able to wear diapers. Sedation was stopped since I wasn’t interacting or reaching the milestones I should have by that point. Soft, loose-fitting clothing was special-made by my 85-year old great-grandmother.

Those two weeks went by. Then, I turned one, and then two, and three and four. By this time, my parents had been told that the risks were high of having another child with Recessive EB. They chose to not have any more children and took appropriate measures to ensure that no more children would be conceived.

Circa 1976

My physical delays were becoming apparent by the time I was 18 months old. I could crawl, but wasn’t using the palms of my hands. I bore my weight on the backs of my hands to prevent damage to my palms. My knees were bandaged constantly due to the damage crawling had caused. My ankles were becoming severely pronated, which resulted in me having to wear special orthotic shoes.

I remember my first steps. I was four. I couldn’t walk long distances, however, as simply walking from the living room to my bedroom would cause severe blistering. The orthotic shoes would also blister my ankles.

Treating EB was never easy. It was a nightly course of pain, migraines and pills. My blisters had to be opened and the skin had to be cut away. All wounds had to have antibiotics applied to prevent infections. I was too young to do this myself, and so it was up to my parents to hold me down, kicking and screaming while the painful, often stinging, routine was drug out from head to toe. Summers were even worse as humidity worsens the symptoms of EB. Lesions become larger and more rampant during summer months. Staph infections become more likely. Just the act of sitting during these months can lead to a line of blisters going straight across the backs of the thighs.

I was placed on dilantin, to again lower my metabolism and movements, hoping that this would lessen the rapidity of blistering. The already arduous routine was now accompanied by another hour of counting every blister. I became inattentive and lethargic and my sore areas failed to decrease. The drug trial was a failure.

5 years old, 1979

I started Kindergarten just before my fifth birthday. My teachers were taught how to carry me properly. Due to my small frame, I was still easily fitting into a small umbrella stroller. This was my mode of transportation.

Halfway through that year, in early 1980, we moved to Monroe, Louisiana. My mother briefly inquired about putting me into a small kindergarten, but they turned her down, saying that they could not accommodate my needs. I spent the remainder of the school year at home while my parents searched for a school that would best suit my needs. A smaller environment was decided to be best for me, where the teacher could give me the one-on-one attention I needed. And so, in September of 1980 I started my first grade year in a small parochial school. That same day, a wheelchair was delivered for me to use.

I continued to use a wheelchair throughout my elementary years, while only being able to take a few steps at a time. I dealt with the teasing and discrimination that comes with that territory.  I was called ‘retarded’, ‘leper’, ‘gross’, ‘ugly’, ‘stupid’… you name it.

Second Grade, 1982

People would pinch, hit, push or simply loathe me just to see what the poor

disabled girl would do. Sometimes, it would land me in the nurse’s office. I would be teased, taunted or even ridiculed. I remember once, in fourth grade, even a teacher made fun of me. My mother had even once been accused of child abuse.

My mother chose not to return to work upon my birth. On average, we moved every two years. My father worked away from home five days a week while my mom stayed home with me. Her status as a stay-at-home mom allowed her to become involved with the schools I attended.  She worked in the cafeteria, drove the school bus and in most instances, produced the school yearbook, all so she could be nearby in the event I had any medical needs. I went on all of the field trips my class attended. My mother would as well, to ensure that if I needed to be lifted or moved, it would be done right and without injury. This continued until I was in sixth grade and had gained much more independence.

I had friends though. I had plenty of them! I was involved in Girl Scouts and at seven, was featured in a local commercial for cookies, in my wheelchair. Even today, I still communicate with and regularly see several of of the friends I had made in childhood. They unfortunately didn’t mask what was slowly causing severe self-consciousness.


About gespurr

I was born in Southwestern Louisiana and has moved over 20 times in her life through nine different states. I spent most of my life in Minnesota, where I met my husband and had my only child. I graduated from Stillwater (MN) High School in 1992 and from the University of Wisconsin in 1997 with a BS in Journalism. Three years later, I met my husband, George, and we married in 2002. Our daughter, Kathryn, was born early in 2004. I relocated to Arkansas in 2005 after being away for 30 years. I currently work as a customer service representative for an insurance company and live in the Little Rock metro. When not taking care of her daughter she is either cooking, working, cleaning house, sewing, gardening, knitting, crocheting hiking, traveling or spending time with her husband.

Posted on October 29, 2012, in Current Events, Epidermolysis Bullosa (EB), Family & Marriage, Girl Scouts, Parenting, School and tagged , , , , , , , , , . Bookmark the permalink. Leave a comment.

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