Please, I need help desperately.
Firstly, I know that this information which I’ve tried to keep bottled for a while will quite possibly have repercussions here on Help.com, but I came here for help. I know that some people now would probably be aware of who I am (or used to be on this site) but quite frankly, I’m in dire need right now to the point I don’t care.
For those who don’t know. My nephew is dying of a VERY rare and unknown disease called Menkes Syndrome. He was diagnosed Last year in September when he was five weeks old. the disease is incurable, and he has now become so ill, he’s not expected to live to see this Christmas. I want to make it clear that I am NOT asking for advice, there is NO advice you can give. I’ve prayed already and obviously my prayers have gone unanswered. I’ve kept onto blind hope that he will make Christmas Day, but recently that hope is fading fast. I honestly don’t expect him to last much longer than two weeks. That is the first time I have said that outside of my subconcious, I can’t even say it out loud.
My mother, believes now after I had a breakdown tonight, that I don’t have a right to grieve. That I need to be strong for my brother and not cry. Now, to be honest, I don’t HAVE anyone else. Plus quite honestly, I hate my mother for a lot of things in the past, present, and probably things in the future. So basically, all I have to physically talk to is someone I hate. I can’t talk to my brother about how I’m feeling (she did NOT have to tell me that) I can’t talk to a therapist -I’ve tried twice with different ones- because they just want to focus on MY issues and ignore my “brother’s” problems.
I’ve given everything I have and I have nothing, absolutely NOTHING to show for it or gives me any consolation whatsoever. My best friend (who’s an online friend from overseas) tells me to not focus on the negative, and I DO understand that, I adore her…but there’s somedays where I wish I could just physically have someone HERE when I cry that’s someone I CARE about, someone who won’t tell me to shut up, but someone who will just shut up and let me cry.
I’m scared. Even more than scared and terrified. It’s closing in on me with every passing second and it’s so hellish in my mind that I’m scared to even say the words associated with it. It hurts to the point I feel like I’m being drowned and I’m falling into despair at once. I feel like no one can understand that. I know some probably do, but that’s how I FEEL.
I want to see him walk, right now I’d give anything just to see him be able to hold his head up and be further away from the breathing, living ragdoll this disease has done to him. He can’t eat, he can’t see his parents in an hour’s visitation without having over 20 seizures, and he’s be told he now can’t see his second, and probably last Christmas. It’s not FAIR. It’s so darn cliche I know, but it’s not. Tell me that someone can be in my position, my brother’s position, my sister-in-law’s position and tell me it’s fair. It shouldn’t even be fair if they’re NOT in them.
I’m tired of having my mother telling me I can’t cry, I’m tired of FEELING like I have no right to fall apart. It’s MY nephew. MY flesh and blood too, and he’s dying. To everyone else on the street, it’s just a sad story to hear. To me it’s a hell on Earth. I don’t even want to imagine the depths of it that my brother of my nephew’s mother is feeling. I don’t understand their pain, and honestly, I don’t want to and never will, but no one understands mine either. It hurts, and I’m not allowed to hurt because I’m supposed to be strong. I’m supposed to be the one that’s just “there” for my brother and support him. I’m not allowed to take this as personal or take anything into it as a part of MY life.
I already AM taking it personal, it IS personal and it F***ING HURTS! I’m falling apart and I can’t stand having to keep it inside anymore. I need help and no one can give it to me because what I need is inevitably not going to be here in mere weeks. I can’t cry, I can’t NOT cry, I can’t keep together and I can’t, nor am allowed to fall apart.
Since writing this post Miss Jaded may have helped people, but has not within the last 4 days. Miss Jaded is a verified member, has been around for 3 years, 1 month and has 18 posts and 351 replies to their name.
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