Our hope is that sharing Logan's story will
1. raise awareness about EB;
2. reduce fear and stigma about EB;
3. contribute to the EB community;
4. invite stories from other parents of children with EB; and
5. provide a platform of discussion for other parents who seek guidance and information about living with EB.

Most of all, we want to provide Logan with every opportunity for a fulfilling, productive, and purpose-driven life. We believe that EB is not a death sentence, nor is it a reason to hold Logan back from his dreams. We believe that living with EB is just another challenge of life… just a little messier.

Wednesday, May 18, 2011

The obligatory introduction...

A little about us:

Gabriel meets Melissa in college, late 90s.  Punk rocker falls in love with sorority girl.  Sitting across from Melissa at Waffle House in 1999 on a first date, Gabriel asks Melissa about the sores on her lower neck.  Melissa replies, "Epidermolysis bullosa simplex" but Gabriel hears, "Epidermilisslkdljkselje bulossieechhgasdd simplex."  After some explanation, Gabriel understands that it's a skin condition that manifests in delicate skin, blisters, and painful sores.  But it's not contagious, and it doesn't keep Melissa from living her life.

Gabriel says, "Oh.  Cool."

Melissa says, "Sexy, huh?"

Actually, Gabriel is moved and inspired by the pretty girl's honesty and bravery.

Fast forward to 2002: they get married.

Fast forward to 2007: first baby, a daughter named Grace.  Clean skin.  Melissa breathes a sigh of relief.

Fast forward to 2010: second baby, a boy named Logan.  Clean skin.  For a few days.  Then, a sore around his little belly button.  Melissa cries.  Gabriel cries with her, then runs to Kroger for gauze and antibiotic cream.

And here we are, a little over a year later, helping our little guy live with EB.  It was difficult at first, but Melissa's experience with EB and Gabriel's fascination with all things medical make it a little easier.

We're still struggling, though.  Cashiers scrunch their faces at our son's leg, dotted with dark red scabs.  Kids want to know "what's wrong with his face."  (Early on, Gabriel replied to one, "Nothing.  What's wrong with your face?"  Oops!)  Doctors don't know what to say or what to recommend.  A pediatric dermatologist even has to look in an old book to refresh his memory on EB.  Many, many packages of gauze and many, many tubes of various skin ointments later, we have an idea of what's working (and what's not working) for our tiny warrior.  But we still need guidance, support, and advice on what's working (and what's not working) for other kids with EB.  In a few years, Logan will be in school and there will inevitably be questions about his skin, whether it's contagious, if he can be in gym class, etc.

The new social media (Facebook, Twitter, etc.) has spawned many horrible things: spam, viruses, Farmville, and Rebecca Black's "Friday."  But it's also opened up a landscape of information and resources for the EB community, and we want to be a part of it.  We want to learn from it and contribute to it.  We do not seek sympathy, pity, or attention.  We simply want to do everything possible to make Logan's life rich and rewarding.

The idea for this blog started after many frustrating months searching (often fruitlessly) for information and tips on ways to keep our son happy and healthy.  After seeing several blogs from other "EB parents," we decided to jump into the game and create our own.  Join us, whether you are an "EB parent" or not.

(Melissa, you are my best friend and an inspiration.  I am blessed to have you as my partner, and our babies are blessed to have you as their mama. -- Gabe)

2 comments:

Holli said...

This looks awesome! I feel so blessed that our lives have crossed and my little Ryan already has a best buddy. Logan is just precious! :)

Anonymous said...

Gabe & Melissa, nice blog. I am going to check in more often.
Glad you have the 2 wonderful children.