“Darkness cannot drive out darkness: only light can do that. Hate cannot drive out hate: only love can do that.”
― Martin Luther King, Jr.
Tuesday, March 5, 2013
I don't know how I feel
I've previously read an absolutely wonderful article from Emily Rapp, NYT Article regarding son she writes often and well on different blogs.
Her story is a one that is so parallel to my own it makes me questions my feelings.
Her son was diagnosed with a degenerative disease and will like die by the age of 3. Her story is how she copes with her son, ignorant people, divorce, and doctors.
I thought, one day it'd be great to write a book on the hilarity and anger that saturates the life of a mom of a severely disabled child. Now I'm going to use this blog a little more freely in hopes that it might be therapeutic for myself and others.
Having a child that will never speak, walk, sing, see, run, graduate, get married, retire, and most other things, sucks. Like really sucks. Like it sucks so fucking hard that you want to kick the suckiness in the face.
I don't know if I am embracing my day to day with my son, I'm afraid of what's going to happen if I put too much heart into it all. Not to say he doesn't get my love but there is always a voice in the back of my head saying, "why are you asking him questions when he doesn't know what you're saying?" Someone once told me or I put it together that making sure my baby is taken care of to the best of my abilities and that he doesn't waste any of his precious time crying or being unhappy is about teaching me life lessons not him. By taking care of someone who cannot take care of themselves and has no way of showing appreciation will always be a part of my character building vs his welfare.
There are no rules in this mommy handbook. There's no What to Expect When You're Not Expecting Your Child to Survive" book. That shit wouldn't sell at all : )
I owe Gabe so much because he taught me how to love and how to be truly honest even when it's a matter of life or death. There's no point in the horrible medical stories or how his life expectancy has increased by another 6 months when I see the doctor... it doesn't help anything.
*** on a side note, I got some serious bullshit from the neurologist regarding Sudden Unexpected Death in Epilepsy. Just happens, can't prevent it.. Work on your bedside manner doc***
Anyways, Emily has a FB where you can read her other articles which are lovely.Emily Rapp's Facebook
Her story is a one that is so parallel to my own it makes me questions my feelings.
Her son was diagnosed with a degenerative disease and will like die by the age of 3. Her story is how she copes with her son, ignorant people, divorce, and doctors.
I thought, one day it'd be great to write a book on the hilarity and anger that saturates the life of a mom of a severely disabled child. Now I'm going to use this blog a little more freely in hopes that it might be therapeutic for myself and others.
Having a child that will never speak, walk, sing, see, run, graduate, get married, retire, and most other things, sucks. Like really sucks. Like it sucks so fucking hard that you want to kick the suckiness in the face.
I don't know if I am embracing my day to day with my son, I'm afraid of what's going to happen if I put too much heart into it all. Not to say he doesn't get my love but there is always a voice in the back of my head saying, "why are you asking him questions when he doesn't know what you're saying?" Someone once told me or I put it together that making sure my baby is taken care of to the best of my abilities and that he doesn't waste any of his precious time crying or being unhappy is about teaching me life lessons not him. By taking care of someone who cannot take care of themselves and has no way of showing appreciation will always be a part of my character building vs his welfare.
There are no rules in this mommy handbook. There's no What to Expect When You're Not Expecting Your Child to Survive" book. That shit wouldn't sell at all : )
I owe Gabe so much because he taught me how to love and how to be truly honest even when it's a matter of life or death. There's no point in the horrible medical stories or how his life expectancy has increased by another 6 months when I see the doctor... it doesn't help anything.
*** on a side note, I got some serious bullshit from the neurologist regarding Sudden Unexpected Death in Epilepsy. Just happens, can't prevent it.. Work on your bedside manner doc***
Anyways, Emily has a FB where you can read her other articles which are lovely.Emily Rapp's Facebook
Such a long time it's been...
As I've been getting my shit together it helps me understand what I'm going through.
-Coping with losing a marriage
-Finding the balance between the reality of Gabe's future and my hopes for it.
-Discovering I have severe ADHD last month and taking supplements for it. Literally my life is on it's head. "Are you telling me everyone around me can focus on their laundry this whole fucking time??"
-Focusing on my drive to get my degree in something I will truly find value in (Hollah, Sociology!)
-Learning to be a better friend. I am such a blabber about myself, ESPECIALLY when I'm excited about something. I have no shame. Ignore this blog as proof.
-Working out what I do wrong in relationships. The list is endless, I am critical and insecure, constantly scared people will fail me or leave me.
-Getting healthy. In a real and legitimate way after having my gallbladder taken out at 25 and not being over weight or eating horribly. I was not impressed by my body.
So am I really going to do the things I'm saying? Especially when they're so similar to last years?
Yes, goddammit. How dare you question me. No, but really. I'm enrolling in school once my FAFSA is approved, I'm reading self help books gloriously recognizing my faults that scare everyone away, and I've been working out and eating great, and I feel great.
Let's see where I'm at in a month.
-Coping with losing a marriage
-Finding the balance between the reality of Gabe's future and my hopes for it.
-Discovering I have severe ADHD last month and taking supplements for it. Literally my life is on it's head. "Are you telling me everyone around me can focus on their laundry this whole fucking time??"
-Focusing on my drive to get my degree in something I will truly find value in (Hollah, Sociology!)
-Learning to be a better friend. I am such a blabber about myself, ESPECIALLY when I'm excited about something. I have no shame. Ignore this blog as proof.
-Working out what I do wrong in relationships. The list is endless, I am critical and insecure, constantly scared people will fail me or leave me.
-Getting healthy. In a real and legitimate way after having my gallbladder taken out at 25 and not being over weight or eating horribly. I was not impressed by my body.
So am I really going to do the things I'm saying? Especially when they're so similar to last years?
Yes, goddammit. How dare you question me. No, but really. I'm enrolling in school once my FAFSA is approved, I'm reading self help books gloriously recognizing my faults that scare everyone away, and I've been working out and eating great, and I feel great.
Let's see where I'm at in a month.
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