Sadness

I don't know if any of you have ever heard of the young girl Shiloh Pepin, but she was a smart amazing young girl, who was born with "mermaid syndrome".. now if you wonder why I decided to put her up, it is because she was also a dialysis/transplant patient...

I saw her documentary, which touched me deeply... due to her syndrome.. she was also born without a bladder like myself.. and as i watched her, I remembered myself at her age. She was a total sweetheart, and made me feel so sad to see that she passed away. she was so spunky and so wise way beyond her ten years. If any of you saw the documentary, everyone felt differently about her parents.

I will admit i had strong feelings the first documentary.. She was offered to seperate her legs which the doctor had highly suggested they do it.. but they left the decision to Shiloh, then 8. Having similar serious life altering surgeries, I had an understanding that no 8 year old can possibly make such a HUGEE decisions... her having her legs fused also meant she had no normal ureathra,bladder,and sexual organs. Now, if you think back to being 8.. can you say "it's ok I will never be intimate or walk... I'm ok with that"...? Whether you have illnesses or not.. sexual health is important to us all. It doesnt say that it is the most important thing on earth.. But I do believe it is a one of the very most truest human choices to decided those things. And we all know an 8 year old cannot comprehend this decision. It is ok for her right now... but when she sees all her friends, every girl she knows going out,being.. a teen. What will happen then? I don't feel i need to announce what I have/had(if you are personally interested, please write me a personal message) .. but I know all to well those feelings. And If i had such a hard time making such a big decision at 13/14... and now at 20. I know a girl at 8 cannot either. So i did not agree that her parents left it to her. Yes, it would have hurt..it would have been dangerous.. but she would at least had a chance at a humane life. I say, their idea that someone will find and love her despite everything and anything.. wont be possible.. not just because of someone else..but herself.. she will see others enjoying the things normal humans..or any creature for that matter..takes for granted.. and she won't feel "right" and if you dont feel "right" how can you find "Mr.Right"? So i did not agree leaving this decision to a 8 year old girl.

But then I saw the second documentary.. and I definitely sided with her mother. I was sad to see that her parents decided to get divorced, but I can understand this. Taking care of Shiloh was a full time 24/7 job. Bags had to be changed,doctor visits/hospital stays, helping her down and upstairs.. endless. But there was a big difference.. Of course they wanted her alive and with them.. but where her father was content in her being "just alive"... but it didn't matter how she would handle the life ahead of her.. What if something happen to her parents? who would take all that on? Who would change her bags,carry her around.. do so much that is involved? Not even, Every person deserves to at least be able to take care of themselves to the best of their ability. And if any of you had you illnesses start in childhood.. then you know and understand what its like for us to be around others who are not ill... Shiloh wasn't immune to this. Her mother had sent her to a special camp for kids with special needs.. she knew that shiloh must spend more time interacting with other kids around her own age. And this stung me, i remember my dad doing the same exact thing.. the first time i ever was away from my beloved papa.. it was torture..and at the same time.. i felt right at home. Every girl there had diabetes like i had. (i had steroid induced) We had all kind of things in common.. it was fun. But i missed my dad. But my dad pushing me, it made me a better person. I don't think I'd have the same outlook on life if it weren't for my dad. My dad knew that Even if im still sick..i still must learn to be in other social situations other than the hospitals... And even with all my dad's pushing.. I still have issues! There is no denying us that went through chronic illness have had a very different childhood than most. But many of our parents pushed us just like Shiloh's mother has. And I don't know about the rest of you.. but I thank my father everyday for it. Anyways, but the main point here is not whether which parent was right or wrong.. both parents adored and loved this wonderful little girl, no question about that. And her passing is so heartbreaking... it's so sad to me. I wrote to her, i never got a reply back, but i do hope she had a chance to read it... I hope she knew she wasn't alone. I hope she knew maybe millions of us didnt personally know her, but she has touched us all so much. losing a wonderful,amazing soul like her.. is just pure sadness. I really do hope that her little old soul with such wonderful personality and spirit lives on.. somewhere where can is free of pain and anything that held her back here...

here is a website saying more about Shiloh Pepin.

http://dsc.discovery.com/news/2009/10/26/mermaid-girl.html