My son and I have a rare genetic skin disorder called Epidermolysis Bullosa Simplex, (yes, you read that right.) I've pretty much outgrown it and had blissfully ignored the condition for most of my 20s. That reprieve could only last so long I guess, as it came roaring back into my life with the birth of my sweet Logan a year and a half at ago. Since then I've been torn. Sometimes I feel it's not that big of a deal really, especially if I don't act like it is. It's not all of L after all, just a small part. Sometimes his skin looks really good, and he doesn't need us to dwell on it anyway. But then the fifth person at Kroger asks me what's wrong with my kid, he's 18 months and still not walking, he accidentally tears off another scab and bleeds on my shirt, Gabe and I hold him down night after night to break his blisters as he cries out in pain and I think, "This IS a big deal, how am I supposed to deal with it?" If you google this disorder,(I know I would,) you'll find a lot of technical medical jargon, some tough-to look-at pictures, and if you're lucky, a few inspiring Mommy blogs. That last one is what I had searched for for over a year, someone I could relate to. In these discoveries, I came across a blog that has changed my outlook on being Logan's mom and my attitude about how I'd like to live my life from here on out. Courtney Roth is the mother of a two year old boy named Tripp, who has a very severe type of EB. Tripp and his mother deal with more pain on a daily basis than most people deal with in a lifetime of skinned knees. You might then assume that her blog would be depressing and sad, and in a way, it is. I've become very attached to a little boy who is very sick. But in many other ways, it's not. Courtney deals with incredible circumstances with amazing amounts of grace, positivity, faith, a good sense of humor, and an unwavering love and devotion to her baby. I cannot possibly sit and feel sorry for myself when she and many other mothers are living fully, even as they know what is inevitable for their children. Tripp is not doing too well, and I encourage you to follow Courtney's blog or befriend her on FB, letting her know, as she did for me, that she is not alone.