Nicky's EB Info World ~ Featured EB patient: Lizie

After having been a mother four years and an adult less than ten, the mirror I've been looking into has become less obscure. It has become painfully obvious to me that I have taken many things in life for granted. How this can be avoided, I am not sure. It seems to be a human (or American) tendency to focus on what is wrong in life instead of what is right. Of course I’ve heard how it could be worse, but, until I became a mother to a child with severe health problems, I never had to deliberately look on the bright side of things for my sanity’s sake. I see the irony in not ever perceiving the value of being in good health until I had the closest thing to me suffer in an unimaginable way. In the following, I will endeavor to illuminate those who have not been shocked into to this realization by tragedy. I hope to awaken for a moment the notion that good health is invaluable--a commodity-- resting on a fragile balance.

Everyday healthy babies are wheeled out of hospitals nestled snugly in their mothers’ arms. After my daughter was born, I lay in a hospital bed visualizing such an event with great anticipation. However, this expectation was shattered after a few hours by news that my child had a serious skin problem--one with a name completely foreign to me and symptoms like something out of a horrible dream. After getting the news, I strolled down to the nursery window to find my baby screaming with much of her skin missing. At her side were three doctors peering into a big book together. My first look at the disease called Epidermolysis Bullosa marked the beginning of living in a different world. Through the nursery window, I saw and felt pain in a different way. My universe expanded, my blinders were removed, and I was introduced to a world where life was a little more complicated. If you have never been forced to look into to such a window, I challenge you to. By doing so, your perception of your own life may change for the better.

It is too bitter an irony that people can live their whole lives in good health and not realize what they have. Good health far surpasses any other esteemed possession to the human being.

Photo: Spring 1999: Lizie immersed in Texas' Bluebonnets. Parents all over the state sit their kids in them usually on the side of the highway.

At the onset, my understanding of my daughter’s disease was obscure. I was told that she was born with a rare genetic disorder--one so rare that a doctor or nurse could work a lifetime and never bump into it. The cause of the disease, I was told, was due to the skin layers not adhering properly, causing areas of structural weakness. Translating into fragile skin vulnerable to damage from mild friction--namely, skin that tore and blistered easily. The technical information about EB (a shorter version of the term) could not equip or give me much of an idea about what we were in for. In just a few weeks after my daughter’s birth, I got a crash course in caring for a burn victim, which was the only logical course of action. The nurses taught me how to wrap the sore open areas, showing me how to keep things as sterile as possible. I learned that the skin lining the mouth, esophagus, and gastrointestinal track were also fragile and could translate into to a variety of problems relating to eating and having bowel movements. The mucus membrane lining the cornea was also said to be affected in the severe cases causing temporary blindness from time to time. I was told that in the worst cases of EB, children never lived more than a few months. No one could tell me exactly how it would affect my daughter because the disease varied so much from person to person.

My greatest desire was to get her home and make her as comfortable as possible.

Photo: October 1997: Jenny, Lizie's daddy Ricky and Lizie after she got 9 of her teeth capped

My experiences up to this point were sheltered from tragedy to a large degree. Coming from a family of four healthy children, I grew up dealing with basic problems unrelated to health. As an adolescent, I was insecure and miserable; as an a young adult, more or less the same. It was in this self absorbed state that I became a mother to a child who needed me to keep her alive. Self absorption was a luxury I could no longer afford. How I made such a transition over night, I do not know. I think my mind simply turned off, and my heart took over.

I will not attempt to describe in detail how it went the first few years of my child’s life. Suffice to say, it went better than expected. Presently, she is five years old. The disease has moved in a downward progression, leaving disabling scars on her esophagus and hands. Fortunately, hand surgeries and esophageal dilatations have improved things, but not fixed them. The scarring on her esophagus was caused by trauma from food passing through it. Along with the scarring, came narrowing making it hard for most food to pass down. Consequently, a feeding tube was put in her stomach so she would have some way of getting nourishment.

Moreover, the scar tissue on her hands has left webbing between the fingers, in addition to bending them in. Her eyes have been affected as well, closing for days at a time on a regular basis. These are just a few of the complications EB has created for my daughter.

Photo: Spring 1999: Lizie redness on her face is caused by eczema, which is finally clearing out now.

A day in the life of my child is probably different than most people’s. You are welcome to peek through our window and take a look for yourself. At first glimpse, you can see a small, thirty-five pound little girl being fed through a tube that is attached and detached at her stomach. This morning, she is complaining of her tongue hurting from a blister that has already popped, and of her bottom hurting from urine stinging an open sore on it. (Incidentally, the blister on her tongue probably happened because she ate a lollipop, and the sore on her bottom was from jumping on the bed). After her feeding, you can see her mother (that’s me) checking for any new blisters that need popping. Today, she has two on the top of her foot that have expanded and filled up during the night. You can see her mother getting out the medical supplies in search of a sterile needle to drain the blisters. You may notice the leathery skin on her knees; the scabs distributed unevenly on places that are often scratched raw; the odd looking hands without fingernails; and a few missing patches of raw skin. It is perhaps difficult to look at, but to the child it is normal, and to the mother, it is heartbreaking. After she is dressed for the day, you see the child standing in front of the mirror with a shy little smile on her face, obviously feeling very pleased with herself. You hear her mother calling for her from the back of the house to come brush her teeth, and the child hiding behind the couch hoping for a game of chase. After circling the living room a few times, you can see her mother carefully scoop the child up under her legs and behind her back, and carry her off. You notice how articulate the child is. You can hear her using words like “splendid” and “twiterpated” (from ‘Bambi’) as though they were a part of any five year old’s vocabulary. You watch as mother and child move slowly out the front door, cautiously stepping down off the front step, out of your view.

Recently, I found a poem about EB by an unknown author . I was surprised to find something that so accurately portrayed our world. Because it is so rare, my connections with people who encounter the same problems come from a support group on the Internet called “EBworld”. The poem goes as follows:

One day with no crying, one day with no pain,
One day of not suffering those blisters again.
One day with no dressings, or needles or cream,
One day you'll awaken with laughter, not screams.

One day of not fearing the slightest tumble,
And to watch you join in with your friends rough-and-tumble.
One day without feeling great surges of guilt
For the genes that I gave you, imperfectly built.

One day of not having to turn a blind eye,
to the ignorant stares of some passers-by.
One day in the future, a potion they'll issue,
To toughen your skin that's as strong as wet tissue.

One day a complexion of peaches and cream,
Will become a reality, not just a dream.
One day with no crying, one day with no pain.
One day without suffering those blisters again...
...one day.

As complicated as our life gets, we still have much to be thankful for. My child has all her mental faculties; she can walk; she can use the bathroom; she can communicate well; she can hear; she is not allergy prone or infection prone, and etc...

My purpose in talking about EB is to show how fragile life is. A defect on one’s genetic code, even skin related, can cause serious, life-threatening problems. But even in the middle of such difficulties, there are always things to be thankful for that others do not have. After being jolted out of a world where I took most things for granted, I now make a concentrated effort to enjoy my own good health while endeavoring to instill great things in my daughter. I have come to the conclusion that people with health problems experience pain and joy on a deeper level because their frame of reference is so different.

Playing: You've got a friend in me from Toy Story
Be Brave. Even if you're not, pretend to be. No one can tell the difference.
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