The Ugly
It has not been an easy ride – we’ve had the skin on her hands and feet degloved numerous times, restless nights of wounds draining right through the bandages and waking up a bloody mess, many dilemmas with eating a whole plate of soft foods due to lodging and tearing of the esophagus, bathroom issues that range from discomfort to dreadful, eye abrasions and lesions that makes it painful to see sunlight and countless trips and falls that caused tearing, shearing and shifting of skin on her nose, cheeks, lips, elbows, knees, thighs, legs and so on. You name it and some aspect of her body inside and out has endured the wrath of EB.
We’ve had more heart to heart conversations than we can count on both hands attempting to explain why she has certain limits and lessen the desire to do certain things that can cause her more physical wounds. We spend nights before an event making sure all precautions are taken care of just to have a few hours of fun – lubricate the eyes so we do not wake up with unexpected eye abrasions, properly do wrappings to make sure we have little to do the next day and get out of the door at a decent time, prepare food and snacks to take as backup in case there’s no “EB friendly” foods at said events and pack a kit with all the wound care necessary for a full dressing change just in case we have an accident. Going on vacation requires months of coordination and mapping to make sure we can maximize our time together. Nothing is ever simple with EB.
The Pretty
The one thing that has managed to stay strong and grow with confidence is her soul, spirit or inner light! Something that EB has not managed to ravage and take control of! In every sense of the word we have a “normal” 10 year old who is a 4th grade gifted student, a part of her school’s chorus ensemble, an active participant of the Alpha Club and a school sponsored Diva’s Club (a club specifically geared towards young girls speaking their minds in a productive and safe environment). Aside from this she has made some great friends. She has two very good friends, her BFFs if you will, that help her out at school. They hang out, go to the mall, movies, fair, bowling, plays, you name it they’re doing it.
Bianca enjoys playing with her dolls, draws and colors, sings, dances, reads, watch TV, going out to dinner and shopping. All things a girl her age LOVES to do…you know spend her parent’s money. She picks up her toys, organizes her book bag, cleans her plate, brushes her teeth, gets dressed, combs her hair and showers on her own. Speaks her mind quite often and leaves us in awe at how intelligent she really is for her own good. When one of us is sick she’ll try and be helpful by bringing a cup of water, a pillow, blanket or a tissue.
The Truth
In reality nothing is easy in life period. I have come to realize that we are all equipped to handle what is thrown at us in our lifetime. We have the tools within us to get through this life one way or another. We have also come to realize that we are all a statistic – something some of us in the EB community become obsessed with. When we jump in the shower, get in our car, walk down the street, etc…we have a risk of something happening. That’s why I have removed the “statistic mentality” from my frame of thought. Let's be honest there are limits to the things you and I can do - like jump off a bridge without a parachute or walk on broken glass... Overall this road we are walking has not been easy. In retrospect if it wasn’t for EB we would not have visited such great places like Denver, San Francisco, Nashville, or Cleveland to name a few. Also, our family would not have met so many great families that are dealing with EB and formed such a level of gratitude and understanding that many do not get to experience. The bonds we have created will last for many generations to come. As much as EB can sometimes try to isolate us and tear us apart our family has learned to use it as a tool to achieve interdependence with many outside of our own household. Ironically enough it has made us much more social than we were before our beautiful daughter was born. So take that Epidermolysis Bullosa! You can knock us down but you can’t keep us there…
