EB awareness week continues! Reason why awareness is important to us #2- EB kids having feelings too.
Being the parents of an EB child means that your weeks are either hard or harder. Taking care of the child is work and it can be very hard, but the parenting aspect of having an EB child is more of what I am referring to. When a child is bullied at school, it doesn't just effect the child, it effects the parents too. It's a hard thing to watch happen and know you can't completely control the situation and shield your child from the pain of others...the pain of life. The same is true watching your child suffer through Epidermolysis Bullosa.
Lately, things have been rough. It is so hard to watch people stare at Daylon when we go out and make rude comments like he can't hear or understand their hatred for something they don‘t even begin to understand. He is a person. We have been kicked out of stores (Yes. You read right.) and been the reason for an obnoxiously boisterous parent to literally drag her children (by the collar I might add) and flee the store yelling to the point that everyone, including the cashiers stop and look, "LOOK AT THAT BABY!! LOOK AT THAT BABY!". Yeah. I'm not joking.
That was just this week.
Last May in a Target store, a middle aged woman had her attention directed to Daylon, after her adult daughter gasped. She quickly turned to look at him and replied, "Oh. That's just gross!" and then surprised by what she let slip, sheepishly left. I stood there, with the blood rushing to my face and the sting of her words pinching my entire body. I have begun to worry that if people keep behaving like this when he goes out that he'll develop low self esteem and think of himself as less that than the perfect little boy that he is. I don't want him to be afraid to go outside and enjoy life. After that woman's comment I went back to the hotel, cried of course, and then made little business cards to hand out to people.
As Daylon’s mom, it breaks my heart into a thousand pieces to watch him go from playful and happy, to embarrassed and shy when he notices people staring or sees children pointing. At just two years old, he lowers his head and stares at the ground. I now have these business cards to hand out and they have been helpful in convincing store managers and some strangers that he’s not contagious, nor a threat to anyone, but I can’t spread the word to everyone. Especially to those loud, stubborn people…you know the type.
Thank goodness for EB awareness week.
A popular comment we hear after people realize that he’s not contagious is, “ Why don’t you keep him at home so people can’t make a big deal or stare at him?”. I mean this the nicest way possible, but that is not an option. Yeah... No. I’m not leaving him locked up at home as if I were embarrassed by him. EB sufferers are like anyone else and have every right to go out and socialize without feeling like they’re being judged. They already live a life of pain, how can they possibly be denied interaction with the world. That’s just ridiculous.
Most times, children are the worst at staring, pointing and ugly remarks. I can only imagine what school aged EB children most go through not only at school, but in public, understanding exactly what is being said.
Wouldn’t it be wonderful if we could raise enough awareness of EB that when a stranger sees an EB child, they could recognize EB and offer a warm smile instead of a glare. Wouldn’t it be wonderful if we could always remember the God loves all of his children and is especially with those who are sick and afflicted.
“…Inasmuch as ye have done it unto the least of these, my brethren, ye have done it unto me.” Matthew 25:40
If we could raise enough awareness, we could take away one form of pain from the lives of those who live with the disease called Epidermolysis Bullosa.
Check back soon for Reason #3- To cure the incurable