I decided long ago to enjoy life for what it is, not for what I’d like it to be.
People look at me and see the “together” image I’m trying so hard to portray. Maybe I hide it so well because I am so used to it.
With Nicky, we’re not dealing with a fixable problem, one that we have the hope of treating and moving on. This is our life, 24/7 and for the foreseeable future unless a cure comes or a treatment is found to lessen the blistering.
I wish I could say I was being dramatic when I say that Nicky’s medical conditions is serious. very serious. My entire life revolves around Nicky’s health and well being.
People don’t choose the color of their skin, their gender, their disability, sexual orientation or the circumstances of how they were born. Rising above is not easy when society at large views them as “less than” and choose to turn a blind eye.
Long-term illness brings challenging hurdles to the whole family.
