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Silvias Kingdom

Silvias Kingdom Blog Details

Silvias Kingdom
I'm Blogging From: United States
Member Since: May 2014
Ranked: #6 in Special Needs Blogs #248 overall

Silvias Kingdom

Subtitled My Life with my Butterfly is my blog about my life with my special need child, born with Recessive Dystrophic Epidermolysis Bullosa. My first baby was stillborn, followed by a miscarriage, Nicky was my third pregnancy. He lives in pain every day. I was also lucky to have a healthy child after him, and I never, ever, take him for granted.

Recent News

  • 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 visit her often and she would always ask for kisses. It was so sweet. I miss her dearly, but I know she had a long life, passing away only a couple of months short of her 102nd birthday. The following is from my book “Butterfly Child”: “When we came back from our trip we had a fabulous party for my grandma’s 95th birthday. It was a day I will never forget.Read More
    Thursday 14th of December 2017 12:28:23 PM
  • 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, all I have to do is look at my healthy son, now 14 years old. He ROCKS! He’s totally willing and able to stand up for himself. He often asks me how to deal with so-and-so and comes home from school telling me how he successfully dealt with whatever situation he was confronted with. Nicky however, is a different story. Raising a child with a rare disease is profoundly confusing and complicated. With something like Epidermolysis Bullosa, we are forcedRead More
    Friday 8th of December 2017 11:21:35 AM
  • 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 than I am, even when the problem is mine. I tell him to chillax. My issue though is that sometimes I refuse to let things or people upset me for so long that when the proverbial drop makes the glass overflow, I tend to act abruptly over a seemingly little thing. Then again, sometimes, they are not little things at all. In the past I have had friends that treated me with such disrespect and I let it slide for so longRead More
    Monday 4th of December 2017 01:15:57 PM
  • Blog Quotes
    For many years to come we survived on donated bandages or, worse, washed and re-used bandages. It’s heartbreaking for everyone to see my son not only suffering but deteriorating before our very eyes.  The death of my child changed me in ways I cannot ever explain nor express the monumental importance of. When you hear a bereaved mom mention the name of their child in heaven, just listen. I will continue to fight, just as all parents on this journey do. We will fight on all levels, with all the love we can muster, because our children deserve our best. Sometimes I wonder if my tiredness is not strictly physical but mental as well. Can anyone feel tiredRead More
    Friday 1st of December 2017 12:22:24 PM

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