Ever since Nicky has started having trouble with the g-tube we had to change our whole routine. While some are small things, the biggest change has been how much weaker he’s become, so, instead of him coming to the couch to change bandages, I go to him. He spends his day at the computer chair, so I grab the bandages and I sit next to him while I change the arm, leg, or whatever. He’s weak because he’s lost so much weight, but also because moving is painful. He’s been moving less and less over the years. When you don’t want to move much, it affects your joints and your muscles. The fact that his feet are mega-sensitive and he can’t really walk on them doesn’t help any. When he does walk he walks (with the help of his walker) on his tippy-toes, which are extremely well padded. An “outRead More →

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 that treatment of the blisters is important; however, correcting the contractures of his hips and knees are critical to getting him walking again, which is one of our major goals” After reading that,Read More →

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 was identical. We all had to bury our babies. There was no going back or doing things differently, hope was lost. It was over. We shared our journeys and helped each other throughRead More →

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, but we could not be more different. She’s always been a tomboy, who excelled in math and athletics. I was always a girly girl, although not as sophisticated as some, who excelled inRead More →