Every EB child is different

I was touching Nicky’s new skin on his foot the other night while changing bandages, and while it looked great and normal, just touching it I could tell that a tiny little movement across his skin with my finger would tear it right off. The other foot was plagued with blood blisters just from attempting to “transfer” from the power chair to the car seat. With a lump in my throat I wondered out loud why. Why does he have to be THIS fragile. So, imagine getting a copy of a letter one Doctor sent to another Doctor discussing Nicky’s “walking” goals. Ugh. Let me share here what they wrote verbatim… “We again emphasized with the mom thatRead More

Different Realities

Having a child diagnosed with something as bizarre and as rare as EB means living in a world that does not fit the reality of our world at large, even within the EB community. In my life I have struggled, worked hard, I’ve been poor and had bad luck, but this is something that most people could relate to, I never truly felt alone. I knew there were a ton of people out there that worked hard and long hours and still struggled, lived paycheck to paycheck, could not afford things… Even after I lost Alex at full term, I could still find other parents that lost babies. Perhaps the circumstances were different, but the end result wasRead More

Beautiful You!

In my quest to collect quotes for my Facebook Page where I share them (I’ve always been a quote freak!), I’ve come through a lot of wisdoms over the years that make me stop and think for a second. None come closer to my heart than those that urge you to be you, you, beautiful you, and to never, ever compare yourself to others. That is a fine and an inspiring statement, but what happens when it’s people in your life that compare you to others? That happened a lot to me growing up and that’s why I find these statements compelling. A few examples are in order. My older sister and I have always been extremely close, butRead More