Second post...

Bubba's daddy here!

I'm a high school teacher, an artist, a musician, and a writer, and I can't think of the first thing to write about on this here blog.  But I suppose it's to share the experience of parenting a child with EB.  So here goes.

The biggest thing lately has been physical development and speech development.

Bubba is now 18 months old and has yet to walk or speak.  He can stand while holding onto something.  He can "cruise" -- that is, walk from point A to point B while holding onto something.  But he hasn't yet stood on his own, much less walked on his own.  He makes noises -- grunts, groans, whines, cries -- but has yet to form any actual words, save for "mama," "papa," "bubba," and the occasional "dada."  We have both a physical therapist and speech therapist, and they are very helpful, but Bubba just hasn't made the "big leap" yet toward independence. 

His wounds are primarily on high-impact areas: elbows, knees, feet, hands.  Because of the ungodly high heat here in Georgia, he has some blistering on other parts of his body (back, chest, tummy).  We've been trying to find some suitable shoes for him, so he has a LOT of blisters and wounds on his feet and toes.  He has toughed it out despite.

One of the biggest concerns as of late has been the coming school year.  Melissa and I are both teachers, so come August Logan will be attending the same daycare as his big sister.  For the past couple of years we have been blessed to have Ms. Vicki, who nannied him and another boy, but this year we're moving him into a larger setting and praying that he'll do well.  We have the same concerns as other parents, but as any parent of a child with EB knows, these concerns are more nuanced: Will he fit in?  What happens when other kids notice his wounds?  How will he feel when he can't get up and run around like the other kids?  Will other parents raise concerns?  We will deal with it, and I'm sure we'll do fine, but still, the concern weighs heavily on our hearts. 

Another big development has been a "crazy" idea I had the other day.  The idea is to get some of my photographer friends in a car, drive around the southeast United States, take pictures of kids with EB doing their thing, then come back to Atlanta to put on some art shows to raise awareness (AND MONEY!) for DebRA. (The families would get prints free of charge, obviously.)  But... I need some help getting in contact with folks in the southeast US who have kids with EB. I need blogs, email addresses, anything. This project is literally two days old and I don't have everything ironed out, but it's something I believe in and want to make happen.

In the meantime, Logan will be stacking blocks, laughing at our tickles, and grunting for MORE FOOD! MORE FOOD! MORE FOOD! 

I will be posting some pictures soon... stay tuned.

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)