Blog · November 15, 2016

20 Years

In exactly 10 days Nicky will be 20 years old.

I have to let it sink in because not only this is a long time for a child that deals with this severe of a form of this condition (and he’s stable at present), but make no mistake, my rainbow baby was surely precious and wanted and cared for in ways I am not yet sure I managed to ever master.

Yes, I am still learning.

Nicky didn’t come with an instruction manual, and since every child with EB is different, even if I had had a manual, I am not sure it would have helped much. Nicky is most certainly unique and I know my style of parenting is unique as well because he is my rainbow baby after all.

I call Nicky my rainbow baby because that is what you call a baby that is born after his or her parents had lost a previous child. Becoming a parent is already an overwhelming process. After a child’s death, the emotions are intense, different, scary, even terrifying. It affected the choices I made on his behalf in ways I am not sure I will ever fully understand. Does he live in a smaller, more fearful world that I would have given him otherwise? Perhaps. But his condition accentuated this 100 fold. No question.

I had a baby that was stillborn followed by a miscarriage, and I chose to become a mother again, to chance losing again. Was I brave or foolish? It’s hard to say, knowing how much Nicky has suffered. Yet, he loves being alive. It’s a double edge sword no matter how you look at it. Nicky hates EB. Hates it. At times he’s absolutely livid with anger over his condition. It’s not often, mind you, but it does happen.

But if losing a child has taught me anything is that a heart can stop. If having a child with severe RDEB has taught me anything is that none escape the deadly consequences. So knowing my son’s heart at the moment is still beating is not something I take for granted. Children can die. Even the healthy ones. We’re all a car accident, a freakish calamity or national disaster away from the unthinkable.

Photo of Nicky that photographer Rick Guidotti took for the project “Positive Exposure”

I love my Nicky with all my heart, but my love doesn’t take his pain away. This is why I instead chose to not think about it much. I don’t let him see how worried I am at times. That’s why I love to write about it instead. Because when I write about it, I can leave it all down and not take it with me and I can instead concentrate on loving him and kissing him and take care of him the best way I know how.

Happy Birthday My darling… and, yes, here’s to 20 more!

Love & Light,