I usually try to keep my posts short, sweet and sometimes silly, but this post is going to be a little different. It's going to be longer than my usual posts, because I wanted to use this platform for something that deserves a bit more time. So stick with me, dear reader.
October seems to be the month of awareness. Breast cancer awareness, Lupus awareness, Spina Bifida awareness and Down Syndrome awareness. They all fall during this month. All of these are extremely worthy and worthwhile causes, but I wanted to shed some light on EB awareness week (Oct. 25-31).
Epidermolysis Bullosa (EB). Yep, it's a long word and I would venture to say that most of you reading haven't the slightest clue as to what it is, but if you did know, you would be sharing and encouraging others to do something about it. That's why I'm here writing about it this very second.
EB is a "rare genetic disease characterized by the presence of extremely fragile skin and recurrent blister formation" (debra.org). In layman's terms: It's blisters. All over. It's painful, and I'm not gonna lie, it's not pretty either. But it's real. Very real. EB isn't something that I have been directly effected by, but it has effected a family very close to my heart. My best friend's nephew, who isn't quite 2 years old, has EB....so does his mom, his grandpa and his uncle.
If I'm being honest, I don't really know what it is like to have to field dozens of questions, looks and whispers about my son's blistered skin on a daily--yes, DAILY basis. I don't know what it is like to be pregnant and wonder if my child will have to face the same struggles I did growing up. I don't have a clue what it is like to have to hold my son down as my husband and I break his blisters before bedtime, because it HAS to be done. But Melissa knows. She and her brother have lived this reality and must do so again through her little boy. All I can do is have compassion, try to have empathy and to use this venue to raise awareness.
Although Melissa, her family and her little boy have this cross to bare--and it can be quite heavy. They are "fortunate" enough to have EB Simplex, which isn't quite so simple. Courtney Roth's little boy Tripp, on the other hand, is faced with a much more aggressive form of EB, and it is a daily fight for his little life.
While I'm concerned about our next trip to Disney, what Kidd-O will be for Halloween, or what fun we get to have tomorrow, sweet Courtney is pleading for prayers that her heavily sedated baby can stand a basic bath without being in sheer agony. She spends her mornings, afternoons and evenings in a rocking chair, because that's all baby Tripp can physically do. Courtney does this with the help of her mom, because this was all too much for her husband to handle...Oh how I take the simple things for granted.
I encourage everyone who is reading this to stop by Courtney's blog. Yes, it's going to be hard to read, and some of the pictures are difficult to look at, but ya know what? That's her baby, her pride and joy! I have been so encouraged and humbled by Courtney and her deep faith in the Lord despite her incomprehensible situation. She handles it all with immense faith, courage, grace, strength and also manages a sense of humor. She is a force to be reckoned with and all I can say is that I don't know how she does it! I know that it all comes from the Lord and she never fails to give Him the glory for all of it. For that reason, I have a LOT to learn from her!
For more information on EB and how you can help or make a donation visit DEBra.org.
Thank you SO very much for taking the time to read this and I pray that you keep baby Tripp and his amazing momma in your thoughts and prayers!