Don’t know what to say? Google “what to say to a special needs mom” or “what to say to a bereaved mom” and you will be inundated with amazing, perfect sentences you can add to your repertoire and make you look as the most amazing, empathetic person on the planet. Try it, seriously. You no longer need to abandon your friends and families when they need you, just Google what to say. You will be their hero forever.
Nicky’s form of EB was one of the rarest, and as much as I admired and trusted his Doctors, I also knew that I – and Nicky once he was old enough to understand – had the final say in everything.
If I can leave you with any message today, just know that Empathy Matters. It really does.
I hate seeing people suffering, and I don’t use that word ‘hate’ easily. I don’t hate much of anything, but I do hate EB. Damn you EB!
I cling to the hope that someday in the not so distant future I will know what it means to see my son being free from the daily suffering he endures.