http://blog.silviaskingdom.com Welcome to my world! Tue, 01 May 2012 03:45:38 +0000 hourly 1 http://wordpress.org/?v=3.2.1 http://blog.silviaskingdom.com/?p=133&cpage=1#comment-316 Nikki Tue, 01 May 2012 03:45:38 +0000 http://blog.silviaskingdom.com/?p=133#comment-316 Ugh this pisses me off so much! If someone gets "distressed and uncomfortable" at looking at a picture of a wound, well maybe they should imagine how really distressed and uncomfortable the person WITH the wounds all over their body EVERY DAY OF THEIR LIFE is feeling! Please keep posting photos and I will do the same because people need to see what is under the bandages! Ugh this pisses me off so much! If someone gets “distressed and uncomfortable” at looking at a picture of a wound, well maybe they should imagine how really distressed and uncomfortable the person WITH the wounds all over their body EVERY DAY OF THEIR LIFE is feeling!
Please keep posting photos and I will do the same because people need to see what is under the bandages!

]]> http://blog.silviaskingdom.com/?p=159&cpage=1#comment-103 Linda Borunda Wed, 07 Dec 2011 12:23:15 +0000 http://blog.silviaskingdom.com/?p=159#comment-103 Sylvia, I am so proud of you for having what it takes to bandage his fingers indevidually. I tried with Melissas and couldn't do it. She is now 16 and says she will never have the surgery again. She does everything with her webbed hands. I cry silently for her, and wish I had what it took to do wwhat you have done. Be proud of what you have done. You are special!!!!!!! Love in Christ Jesus. Thank You for all your info. Sylvia, I am so proud of you for having what it takes to bandage his fingers indevidually. I tried with Melissas and couldn’t do it. She is now 16 and says she will never have the surgery again. She does everything with her webbed hands. I cry silently for her, and wish I had what it took to do wwhat you have done. Be proud of what you have done. You are special!!!!!!! Love in Christ Jesus. Thank You for all your info.

]]> http://blog.silviaskingdom.com/?p=142&cpage=1#comment-65 Andres Wed, 16 Nov 2011 01:22:00 +0000 http://blog.silviaskingdom.com/?p=142#comment-65 Saved, I enjoy your site! :) Saved, I enjoy your site!

]]> http://blog.silviaskingdom.com/?p=123&cpage=1#comment-37 Michelle Turowski Wed, 26 Oct 2011 00:21:51 +0000 http://blog.silviaskingdom.com/?p=123#comment-37 I love you Silvia. You know what hurts me. I feel such a hate for this disease called Epidermolysis Bullosa. But at the same time I feel ashamed for hating it. How can I hate something that is such a huge part of my childs existance. When we have children we desire to love there whole being and its not right to hate any part of them. Its not fair that I have to shut myself off from feeling sometimes because if I really let myself, the intesity would devour me. I guess that is why it is so important that families effected by this disorder continue to support each other. Love each other where there at. Your right no one else could ever understand. On the positive note, I know you have to agree with me on this one. Look at how EB support from parents to parents to young adults and so on has grown since our little ones were born. None of us have to be alone anymore. And we can laugh sometimes. I was just telling Amy how much I admire the way you celebrate life in all you do. I dont know why all this is happening but I do know that its people like you who pave the way for change because of all your efforts. Thank You and I love you Michelle Turowski I love you Silvia. You know what hurts me. I feel such a hate for this disease called Epidermolysis Bullosa. But at the same time I feel ashamed for hating it. How can I hate something that is such a huge part of my childs existance. When we have children we desire to love there whole being and its not right to hate any part of them. Its not fair that I have to shut myself off from feeling sometimes because if I really let myself, the intesity would devour me.
I guess that is why it is so important that families effected by this disorder continue to support each other. Love each other where there at. Your right no one else could ever understand.
On the positive note, I know you have to agree with me on this one. Look at how EB support from parents to parents to young adults and so on has grown since our little ones were born. None of us have to be alone anymore. And we can laugh sometimes. I was just telling Amy how much I admire the way you celebrate life in all you do. I dont know why all this is happening but I do know that its people like you who pave the way for change because of all your efforts. Thank You and I love you Michelle Turowski

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