Thursday, October 27, 2011

EB Awareness- EB kids have feelings too

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


shaddai hernandez said...

Powerful, Jennifer! It's unbelievable how rude people can be. The cards are awesome!

Anonymous said...

Very well said, Jennifer! Thank you for writing this. And I love your business cards!

jeanine said...

I love the business cards. What an inspired idea!

And I cannot believe how unbelievably rude and inconsiderate people are.

ChristieZink said...

Jennifer, I love your amazing idea. It is so disheartening how insensitive people can be. I posted yesterday after one of my experiences at Target that somewhere between reading and writing we have forgotten to teach our children kindness and compassion. Thank you for this wonderful post. I hope that we reach that level of awarenss someday and that in the future people with EB will be met with kindness and not the insensitivity that you have encountered.

Mom to Many said...

Oh, wow. People, people...
I know that you look hard for the good in the world. You are so positive.

My brother was burned in a fire 15 years ago and has faced comments, looks and stares. It is such a heart break.

Seeing someone in a different situation needs to be a teaching moment for parents. I am sorry for the stupidity of others. I am sorry the teaching burden has become yours.

The first time my oldest saw someone that caught her attention we discussed what she saw. ...Quietly...

Raising awareness one person at a time.


Anonymous said...

Of all the trails and tribulations concerning EB that you, the Ringgolds and Courtney have shared this has got to be the most heart wrenching.I feel so angry.What kind of people are these people? Any wonder more then half the world is at war.The children reflect the parents behavior.You Jennifer,are the true example of Christian action,your light is the Light of Christ. keep it shining.Daylon, hold your head high you brave little man.

Alexandra said...

I have tears streaming down my face! Some people are just so unaware of other peoples feelings it's frightening!!! The stories you tell are terrible! Your card is an absolutely brilliant idea. And the text you had written was easy yet informative. You EB parents are wonderful!

All the best, hope Daylon is ok at the moment. I aways read your updates.

Alexandra in Australia

Anonymous said...

I really feel like big things are happening, thanks to you, The Ringgolds, and Courtney and Tripp. I've learned more lessons in the last couple of months of following all of the blogs than I've learned in my lifetime, and I hope the same is true for others. I'm forever grateful for these great lessons I've received from wonderful children and their families. As the number of people like me grows, I hope that the number of comments and stares decrease so that other people's negativity and judgements do not stand in the way of these children leading as normal lives as possible. Much love to you all! Your baby deserves the world!

Shawna L.
Washington, MO

Anonymous said...

I feel like I should I add that I am aware that there are other EB families making a difference out there, I just don't have names because I haven't got to reading about them yet. I'm on to the next one, since I'm caught up on yours. :) I will continue following!
Shawna L.

Anonymous said...

My name is Opal. Six months ago I didn't know what Eb was and came across Tripp's blog. Now I am organizing a 5K run to raise money and awareness. Stay strong Daylon and the other EB kids are making a difference.

Anonymous said...

Hey, what about getting target to be a sponsor for EB. they could put Daylons picture up and in no time at all every shopper in your area would love that little guy and donate to EB. Just a thought!!

Anonymous said...

I love the cards you made :) I would love to do the same thing for my daughter. All of her "issues" (I don't want to sound negative...) are invisable, so to people in passing she is just being a brat. Or they question my ability to parent her corectly. I would be more than willing to explain what is going on rather than feeling like the local show stopper.

Thandi said...

I've been reading your blog over the past two days. I started from the beginning and hadn't commented till this one.HORRIBLE HORRIBLE! For some reason,the thought that people would think he has an infectious disease when you and the other kids are so healthy,just doesn't make sense.And it's not like you're asking them to touch him or come close enough for him to sneeze on them,even if he did have some disease that can be spread. But just in general..THIS sucks .That you can't have a normal life outside the home.Well, everything is horrible,but this is an aspect I hadn't thought of.

Anonymous said...

I am sixteen years old, and I also have EB. I go to school normally and have an extremely blessed life. I have met quite a few children with EB, and have talked to many parents about what I have been through. I remember what it was like when first beginning school and having to explain my disorder to everyone I met (I still do when there are new people that ask questions), but although it is hard, it does help to know you aren't alone. I am currently looking for a way that I can help families like yours. You are in my prayers.