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!
