Coming Home

you wait for the entire time they are gone. You wait every day and diligently watch the clock all the while trying to think of a way to bring them home quicker. When your loved ones are gone you lament until they return. Some don't ever return and some return in a different condition than when they left. Lobo came home today...

I missed her dearly and was at my wits end when she was on vacation. This whole ordeal is a new walk for her even though she has lived it from the outside with me and my problems arising from it. Pretty much everyone who knows us knows I never liked the sunshine-bright light and that it never liked me. It wasn't like it was visible or externally manifested but the discomfort and my verbal description should have alerted someone decades ago that there was a problem. I'm simply water and the light is oil. But only recently Lobo was diagnosed a little over a year ago. I want her to take her health seriously but when she knows I have survived certain odds, it gives her a false sense of security making her believe she is invincible too. Only she isn't and she's a minor and she needs to defer to parental wisdom and consent for her activities. And on vacation I had no say. She was in the care of a father who knows she's sick and has had information made available to him, though he refuses to read or take in such information in the hopes it will exonerate him from having to act on the matter. But she had grandparents with her who should have known a full year ago about her disease and they weren't informed until after the plans were made and without opportunity to investigate when their granddaughter informed them of her genetic issue.

My issue is this. Who is responsible when a justice system allows a man who is refusing to keep his child safe and free from illness in the best of his capability and doesn't? It wasn't as if it would have affected more than the times that they did their activities but it cut into his sleep to honor her "night" lifestyle necessity. His needs were put before hers. They always are and still the courts see him as a fit father. Only now the damage he is doing is a slow progress of pain and suffering she is too innocent and young to comprehend and he is just refusing to recognize. The absorption she takes in now will have lasting affects for years to come and there is no law to protect her from his willful neglect and abuse. She knows she's not supposed to be out in the light and sun but what kid wants to forego a trip to Six Flags? My kid spent the last half of her vacation sick and unable to eat. She was burned on the outside as any normal kid would be in the sun all day that is as pale as her and I are. But she was "burned" on the inside far worse with our EPP and this is unjust. It's a mother's and father's job to keep their babies safe. This mother's hands are tied by the legal system and her child's father and her child's naive outlook on her disease based upon her mother's own unique circumstances.

Had it been me to neglect her I would be accused of Munchhausen's Syndrome and not for the first time either. It's funny how they put that label in bold print in her medical file but failed to put it as boldly when they corrected their horrible accusation. And her father seems to always know the legal loopholes that get him freed of any and all wrong-doings. So, if it was me to expose her to the very thing that poison's her you bet your ass I would be in lock-up today pending charges of child abuse and allegations of a mental illness I am incapable of. Who is looking out after MY little one?(walks away sadly to care for a yet still sick daughter just returned, but not in the same condition she was sent)~mobe's love to her all and her all to her loves.