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Silvia's Kingdom · 2W ago

Blog Quotes

Just like all EB patients are different, so are the parents. All I ask is a little respect. I’ve taken care of Nicky’s every need since he was born. Please allow me the benefit of the doubt ...
Silvia's Kingdom · 3W ago

Caring Matters

The other day I came across a post about “9 things Italians living in the US will miss“, and while I concurred with everything posted, the one that spoke to me most was the one about family living close by. Oh, how I miss that! But it goes further th...
Silvia's Kingdom · 1M ago

Nicky’s in Charge

The other night I was changing the bandages of Nicky’s lower back and to my dismay, in the...
Silvia's Kingdom · 2M ago

Nicky’s Life Part 55

August 1997 – Nicky here is 8.5 months old and with my help he can stand up. At this point his feet were not too bad so he could put some weight on it. Plus, he was not that heavy! This is key and one of the reasons why nowadays it’s painful for him ...
Silvia's Kingdom · 2M ago

Things Don’t Get Easier

From my book “Butterfly Child“: “For a long time I told myself that things would get easier. It was going to be easier once he sat up, or when he was out of diapers, or when he turned 10, bu...
Silvia's Kingdom · 2M ago

Blog Quotes

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 mi...
Silvia's Kingdom · 2M ago

Ancestral Discoveries

Everyone in my family knows how obsessed I am about genealogy. Completely obsessed! So it should come as no surprise that one of my favorite TV shows is “Who do you think you are“, who just ...
Silvia's Kingdom · 3M ago

We are the Experts

“This message is so simple, yet it gets forgotten. The people living with the condition are the experts.” I was reading an interview with Michael J. Fox on a magazine and when I read that li...
Silvia's Kingdom · 3M ago

Nicky’s Life Part 54

July 2013 – Nicky, 16.5 years old, on the deck of our cruise ship as it was approaching Da...
Silvia's Kingdom · 3M ago

NO. Not me.

Yesterday morning I had a Doctor appointment and as I was sitting in the waiting area I struck up a conversation with an older gentleman looking lonely. I normally don’t struck up conversati...