EB awareness week. I missed it. In order to redeem myself I would like to write from the heart, my greatest goal for creating awareness is by creating unawareness.Confused? Let me explain. What I want people to know is the teenager girl beyond the blisters. One of the most difficult aspects of the disease,are not only public outings with Kourtney but people (friends and acquaintances) who can't see past the disease. The stares, the pity the assumptions that the only answer to her disease is a miracle cure or a prayer for healing. Although we have become very savvy in our techniques of handling awkward moments it still doesn't get any easier. Many of our caregivers, Kourtney's cousins, aunts and uncles would vouch for us as to how annoying and unrelenting a public outing becomes. My goal is to give you some insight into our "public" lives as well create awareness next time you or your family see anyone who looks different.
Kourtney handles the "paparazzi" way better than I do. I know, being the mom and all, that I should be the "bigger" more gracious person, however I have developed this innate "radar stare detector". When I am pushing Kourtney in her wheelchair, I generally have the advantage of catching peoples' eyes before they catch Kourtney's when they are trying to "figure" out my daughter. My most effective strategy is to stare back. It actually works,it creates an awkward moment and they end up looking away. For the people I don't end up catching on my radar, I just run them over with Kourtney's wheelchair and say, "Oops I'm sorry!" (The latter is not true, but sometimes I feel like doing it. Uncle Wonderful on the other hand has pulled off some 'accidental' crashes.) If you can't keep yourself from staring at least try smiling or saying something nice
The questions and comments are exhausting. Most of the time when people ask me, "What happened?" my general response is "Why do you want to know?" It generally makes people embarrassed and they have no idea how to answer. On rare occasion people say they would like to pray for her. That is fine as long as they don't do it right there in public.Just remember God hears your silent prayers just as much as your public prayers. (Kourtney is a teenager and it is embarrassing) A lot of people assume she is burnt to which we reply, "If only it were that simple." I refuse to give a lot of detail unless people show genuine concern. I have learned not to throw my pearls to swines.
Then we have the "miracle cure" people. The one situation that stands out in my mind was an lady who wreaked of alcohol , her shirt buttoned up wrong, telling me I should use aloha vera on her. I have had people (strangers) tell me what kind of pyramid product Kourtney needs. (I am sorry but there is a reason it's not approved by the FDA!) I usually say, if you believe this product will help my daughter will you give it to me for free? This generally keeps that person real quiet after that. People!!! don't prey on vulnerable families with your miracle cures! To be perfectly honest I have tried a lot of different products on Kourtney which have done way more harm than good. If I "bought" into every product that was going to be a miracle cure I would be a very poor person and my daughter wouldn't have liver or kidney function. What I want the world to know is we have dealt with this disease for 16 years, we know it well……you (the product seller) have seen her for 2 seconds……please don't! We have seen modern medicine (and the power of prayer) work the best in treating EB.
The next topic I want to handle as graciously as possible are your child's questions and stares. Because this is about awareness I want to use it as a guide to you as parents to provide the "best response" when your child asks awkward questions. I think the funniest situation we encountered was in Costco. A four year old boy was sitting in a cart and was staring at Kourtney. He said to his dad, "Why doesn't she have any hands?" The dad smacked the kid and said, "Stop staring!" The child instantly felt embarrassed and looked away. Kourtney and I laughed about this for a long time. Although we don't condone corporal punishment Kourtney and I feel much more relieved when the parents verbally reprimand their children for being impolite and staring. It stops the kids from asking more. As much as we want our children to be curious and try to appease them, think of the hundreds of times this has happened to the person on the other end, let it be a social education for your child.
Lately we are learning to laugh more at these situations . Kourtney has "sign language" that her closest acquaintances know, she makes us snicker when encountering some awkward moments. Recently we took Kourtney to a skipping camp in Penticton. We were with Kourtney's "old", I mean former, teacher's aide, Tammy. Tammy has always been able to bring out the sarcasm in Kourtney. I was going to leave Kourtney in the gym for a bit. I know Kourtney can fend for herself, but I jokingly asked Tammy to "babysit " Kourtney. Kourtney quickly replied, "I will babysit Tammy." There was a man who was standing there who laughed out loud when he heard Kourtney's unexpected witty sarcasm. That is what we want people to see- not her disease!!!
We know that this will be a journey for the rest of our lives. If I could I would wish for EB to be completely eradicated from Kourtney's life. In creating awareness, my goal is that when people see Kourtney or any person that looks different that they are not seeing just the disease but the funny sarcastic cute teenage girl that Kourtney is. Creating awareness=Unawareness.
