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Silvia's Kingdom · 2h ago

Yes, EB Children can be Hugged. Just Be Gentle.

A lot of times, when seeing articles posted about children with EB, we see these sorts of titles: Girl can’t hug parents because rare skin condition causes her to blister when touched Video:...
Silvia's Kingdom · 1d ago

Thank You for Listening

Every now and again I get an email or a message from people I know and even from strangers telling me they’ve followed Nicky for X years and follow this blog and offer me  kind and compassio...
Silvia's Kingdom · 5d ago

Nicky’s Life Part 60

Halloween 1999 – Nicky was almost 3 years old when I took him to the mall to trick-or treat. I always looked for soft costumes and this one of “Po” of the Teletubbies totally fit the bill! A...
Silvia's Kingdom · 1w ago

Moving Forward…

  As I was changing Nicky’s bandages last night I noticed how much better his wound mass i...
Silvia's Kingdom · 1W ago

Blog Quotes

Even with all this evidence on how much my wrapping is working, they are STILL telling me I wrap Nicky too much. I swear, it will never end. Isn’t prevention key? My job is to keep my head a...
Silvia's Kingdom · 2W ago

Why I No Longer Get “Offended”

There was a time in my life where everything offended me. The worse of those times I recounted in my book, Butterfly Child. It was during Nicky’s second Christmas in 1997 and I was at my low...
Silvia's Kingdom · 1M ago

It’s not Political Stuff, it’s Human Being Stuff

Nowadays, everytime I turn around, I hear something on the news on how the life of my child, once again, is an afterthought. The latest one is how the new tax plan passed unanimously by the ...
Silvia's Kingdom · 1M ago

Nicky’s Life Part 59

August 1998 – When we spent several months in Italy in 1998 so that my parents could help me take care of Nicky, I had the opportunity to have my little guy spend quality time with my Nonna Rina, which is Nicky’s great-grandma (BisNonna). We would go...
Silvia's Kingdom · 1M ago

Standing Up For My Son

As parents, we always want to encourage our children to be able to stand up for themselves. Anytime I feel I may not be doing a good job at this considering how much I advocate for my Nicky,...
Silvia's Kingdom · 1M ago

Have A Cup Of Positivitea

I pride myself in being even-keeled. Very little truly upsets me anymore. Looking at the bright side? That’s me. I let a LOT of things go. Ask my husband! He is often more upset about stuff ...