I showed up at Rob's house today. I thought we were going to go catch a movie. When I got there, Rob mentioned he was scared to go in the car with me. Because I would have to lift him into the car and lift him out into his wheelchair. And he didn't trust me enough not to drop him on the ground. Fair enough. When he was first sick, he weighed less than me. But now he is on steroids and carrying him around might be a pretty tough task. So, we went together down the street to a little Cuban restaurant. There was a table near the door that we sat at. And when the menus came, Rob asked that I read the menu to him. He held his finger on the one he wanted so he was able to order for himself.
Independance. It's got to be so hard. When he wants to call me, does he need help finding my name? Fuck. He can't even pee without help. I don't have a clue of what it takes to be his caretaker. I used to. I used to inject heparin in his hickman - a port that was inserted into his chest to take medication through. I would care for his wounds. Get him into bed. Advocate for him. Help him up the stairs. Make his meals. Clean up his emesis bucket. Help him into the shower. Keep track of his medications and chemo. Call the Medicaid bastards to get them to pay for his treatment. Now it is very different. He needs help dressing. He has braces on his legs. How do you provide support in this situation without doing too much? Or too little? It's a fine line.
He mentioned how frustrated he was with his mother. She apparently said something to the doctors that kept him in the hospital an additional three days. At least that is his point of view. She is so loving and caring that it stifles him sometimes. But it's so hard to understand what he wants or what he needs. So when we made rootbeer floats and she brought out some chocolate sauce, he nearly flipped because he didn't want it.
His mother asked me if she could take my picture. They are making a speech board for him to use to communicate when he begins to lose even more speech. Fuck. Are you kidding? I've worked with special needs kids at school who use these boards. And now you are telling me that the man I married... the man who pulled my garter off my leg with his teeth... who led five pitches to the top of Independance Monument... who traveled halfway across the world to trek across Russia has to now point to words to tell me what he means?!?!
God in Heaven,
He said he wants to make it to his 30th birthday. That is fifteen days away. This man wants to survive fifteen days and not a day more. Today he said he just wants to stay at home and die. Do you hear this, God? He is ready. God listen to him! Before he loses more. Before he loses the use of his left hand... his left leg. Before he becomes totally trapped within his own body. He needs to be released from this body and this world. Please.
Independance. It's got to be so hard. When he wants to call me, does he need help finding my name? Fuck. He can't even pee without help. I don't have a clue of what it takes to be his caretaker. I used to. I used to inject heparin in his hickman - a port that was inserted into his chest to take medication through. I would care for his wounds. Get him into bed. Advocate for him. Help him up the stairs. Make his meals. Clean up his emesis bucket. Help him into the shower. Keep track of his medications and chemo. Call the Medicaid bastards to get them to pay for his treatment. Now it is very different. He needs help dressing. He has braces on his legs. How do you provide support in this situation without doing too much? Or too little? It's a fine line.
He mentioned how frustrated he was with his mother. She apparently said something to the doctors that kept him in the hospital an additional three days. At least that is his point of view. She is so loving and caring that it stifles him sometimes. But it's so hard to understand what he wants or what he needs. So when we made rootbeer floats and she brought out some chocolate sauce, he nearly flipped because he didn't want it.
His mother asked me if she could take my picture. They are making a speech board for him to use to communicate when he begins to lose even more speech. Fuck. Are you kidding? I've worked with special needs kids at school who use these boards. And now you are telling me that the man I married... the man who pulled my garter off my leg with his teeth... who led five pitches to the top of Independance Monument... who traveled halfway across the world to trek across Russia has to now point to words to tell me what he means?!?!
God in Heaven,
He said he wants to make it to his 30th birthday. That is fifteen days away. This man wants to survive fifteen days and not a day more. Today he said he just wants to stay at home and die. Do you hear this, God? He is ready. God listen to him! Before he loses more. Before he loses the use of his left hand... his left leg. Before he becomes totally trapped within his own body. He needs to be released from this body and this world. Please.
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