Blog Quotes

There is an unfortunate and long history in this country of blaming the poor and the sick for their station in life. Expecting those in poverty or who are chronically ill to “pull themselves up by the bootstraps,” either forgetting or not understanding that many have no boots, it’s not only judgemental about people in situations they know nothing about, but is simply wrong.
Some moments in our life teach us how to be, some teach us how not to be.
This moment in my life will strengthen my resolve to be even MORE loving, MORE understanding, LESS fearful, LESS judgemental. That may not stop any bombing anywhere or the hate and ugliness around me, bit it can improve MY daily life considerably.
This message is so simple, yet it gets forgotten. The people living with the condition are the experts.
Bottled up feelings can lead to mental and physical illness.
The reality is that our family has been deeply impacted by EB. While it’s true that at times it’s not a big deal and we can pass for a somewhat normal family, most often the challenges are significant.