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