{"id":2319,"date":"2016-11-15T12:11:43","date_gmt":"2016-11-15T20:11:43","guid":{"rendered":"http:\/\/blog.silviaskingdom.com\/?p=2319"},"modified":"2016-11-15T12:11:43","modified_gmt":"2016-11-15T20:11:43","slug":"20-years","status":"publish","type":"post","link":"https:\/\/blog.silviaskingdom.com\/?p=2319","title":{"rendered":"20 Years"},"content":{"rendered":"

In exactly 10 days Nicky will be 20 years old.<\/p>\n

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.<\/p>\n

Yes, I am still learning.<\/p>\n

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.<\/p>\n

I call Nicky\u00a0my 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\u00a0fully 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.<\/p>\n

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.<\/em><\/strong><\/span> At times he’s absolutely livid with anger over his condition. It’s not often, mind you, but it does happen.<\/p>\n

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.<\/p>\n

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Photo of Nicky that photographer Rick Guidotti took for the project “Positive Exposure”<\/p><\/div>\n

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.<\/p>\n

Happy Birthday My darling… and, yes, here’s to 20 more!<\/p>\n

Love & Light,<\/p>\n

\"birthdaygirl_silvia\"<\/a><\/p>\n

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