As mothers (and fathers!) we have children for many reasons, none of which include seeing our babies in pain for decades nor burying them.

The death of a baby is a scarring event, make no mistake about it. The thing that haunts me the most is that it’s so final. There is no hope to be had, it’s over.

Having lost a baby at birth, I can honestly say, from first-hand experience, that the grief is absolutely and completely heart-wrenching. It is horrible. I lived in a sea of tears for months after Alex was stillborn and ’til this day the topic is just too much for me.

The truth is, I love my Nicky just the way he is, I just want the EB to disappear.

If there was one thing I would like to make sure everyone knows is that every special need parent is indeed an EXPERT in their child and should be treated as such.

Special Need parents do not ask for much, but if there was one thing we need and frankly deserve is respect.

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