Category Archives: Parenting

10 things to never say to someone impacted by EB

mikekatepoolEB (Epidermolysis Bullosa) is a group of inherited skin disorders in which the patient is missing the proteins needed to produce the correct amount of keratin in a person’s skin. As a result, someone with EB can easily blister or lose skin. Children with EB are also known as “Butterfly Children” because their skin can be as delicate as a butterfly’s wings.

As someone who was born with EB and has lived with it for now 40 years, I’ve heard plenty of well-meaning words from people. Some of them, however, have been out of ignorance or innocence. Some things have been downright hurtful.

Here are some things you may want to refrain from saying to someone impacted by Epidermolysis Bullosa (EB):  Read the rest of this entry

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I usually LOVE frogs, but…

For those who are curious: it takes 1/20th of the time to rip apart 1/2 a knitted sock (because you accidentally dropped and unravelled all your gusset stitches; both sides; when your kid continuously said “hey mom! Watch this!”) as it did to create it.
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On where I’ve been

Several people have asked me over the past several months to bring my blog back; that I wrote well and expressed things from the heart; that my topics were never dull and were entertaining.

The truth is, I wore out. I ran out of things I wanted to talk about. I tried so hard to focus on regular features rather than expressing my inner thoughts that I burned myself out. Read the rest of this entry

Married in Sequined Slippers (Part IV)

Into Adulthood

Circa 1995

By the beginning of college, I was no longer using the wheelchair, at all. I walked to all of my classes …in shoes and sometimes in boots. I had also conquered the Mall of America on foot. When this new-found freedom came boys, parties and the college and life experience that I personally felt I had been hindered from for so many years. I rarely told people about my condition, and felt that it was only a need-to-know basis. At the same time, however, I’d wear shorts or tank-tops that obviously revealed my scarred legs. This became an issue at one point a few years later…. One that I never thought of.
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Married in Sequined Slippers (Part III)

Article in Rockdale Citizen, 1979 (Click to enlarge and read)

Adolescence

By the time I was fourteen, I was able to walk long distances, but could not do so in shoes. I was in an adapted physical education class because I was not able to the things everyone else could. Pull-ups would shred my hands, as would push ups. If I had been hit by a ball, my skin would have come off upon impact. Asking me to run sprints was like asking a turtle to play fetch. It was impossible. I had days where I would come to school in slippers because my feet were so swollen and sore. Other days, I would walk a mile.
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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. Read the rest of this entry

Married in Sequined Slippers (Part I)

What is Epidermolysis Bullosa?

Some would describe Epidermolysis Bullosa as horrific. Some use words like “Painful”, “devastating”, “horrible”, “dreadful” or “insurmountable”. It’s also been described as “The worst disease you’ve never heard of”.
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It’s not just a teen issue

We, as adults are hypocrites. There’s no denying it. Just look around. It’s nothing new. For generations, we have told our kids to “do as we say, not as we do.” My mom told me not to smoke, yet she has been for more than 40 years. My grandparents told their own kids to “wait” until marriage, I’m sure. Yet, both of my sets had children born less than 9 months after their wedding dates. These were probably considered harmless. But in today’s society, what we think is harmless now has deadly consequences.

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Challenge accepted

Since she was 4, Kathryn has wanted an Iphone. All the whistles and bells and games on it are what motivated her. “You can have an Iphone when you can afford the $40 a month for it”, we told her. Read the rest of this entry

…And then there were 10 (revisited)

It was about this time five years ago that my phone rang from my Aunt’s house. Then, it rang again. And again. I knew it could only mean one thing. I excused myself from my desk where I was working at the time. I still remember the next five minutes of my life just as clear now as I did that Monday morning.

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