Gabe's diagnosis

Bilateral Schizencephaly:

Excellent summary on this site, the problems, surgeries and predictions are all very accurate.

Comforting it's out there.

http://noahscart.org/wischizen/

Are you with the right partner?

Excerpt:

Here's the answer. Every relationship has a cycle… In the beginning; you fall in love with your partner. You anticipate their calls, want their touch, and like their idiosyncrasies. Falling in love wasn't hard. In fact, it was a completely natural and spontaneous experience. You didn't have to DO anything. That's why it's called "falling" in love. People in love sometimes say, "I was swept of my feet."Picture the expression. It implies that you were just standing there; doing nothing, and then something happened TO YOU. Falling in love is a passive and spontaneous experience. But after a few months or years of being together, the euphoria of love fades. It's a natural cycle of EVERY relationship. Slowly but surely, phone calls become a bother (if they come at all), touch is not always welcome (when it happens), and your spouse's idiosyncrasies, instead of being cute, drive you nuts. The symptoms of this stage vary with every relationship; you will notice a dramatic difference between the initial stage when you were in love and a much duller or even angry subsequent stage. At this point, you and/or your partner might start asking, "Am I with the right person?" And as you reflect on the euphoria of the love you once had, you may begin to desire that experience with someone else. This is when relationships breakdown. The key to succeeding in a relationship is not finding the right person; it's learning to love the person you found. People blame their partners for their unhappiness and look outside for fulfillment. Extramarital fulfillment comes in all shapes and sizes. Infidelity is the most common. But sometimes people turn to work, a hobby, friendship, excessive TV, or abusive substances. But the answer to this dilemma does NOT lie outside your relationship. It lies within it. I'm not saying that you couldn't fall in love with someone else. You could. And TEMPORARILY you'd feel better. But you'd be in the same situation a few years later. Because (listen carefully to this):The key to succeeding in a Relationship is not finding the right person; it's learning to love the Person you found. SUSTAINING love is not a passive or spontaneous experience. You have to work on it day in and day out. It takes time, effort, and energy. And most importantly, it demands WISDOM. You have to know WHAT TO DO to make it work. Make no mistake about it. Love is NOT a mystery. There are specific things you can do (with or without your partner), Just as there are physical laws Of the universe (such as gravity), there are also laws for relationships. If you know how to apply these laws, the results are predictable. Love is therefore a "decision". Not just a feeling.

Love me some Eugenides

“We knew, finally, that the girls were really women in disguise, that they understood love and even death, and that our job was merely to create the noise that seemed to fascinate them.” 
― Jeffrey Eugenides, The Virgin Suicides

Words

“Darkness cannot drive out darkness: only light can do that. Hate cannot drive out hate: only love can do that.” 
― Martin Luther King, Jr.

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

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.