krowface: xenomorph in full lotus position (Default)
I'm missing my girl really bad this morning. I'm okay and I'm safe, but it's not the same without her in my arms.

krowface: xenomorph in full lotus position (Default)
My daughter has a heart condition and could need life saving surgery at a moment's notice.

My daughter currently lives with a few minutes *walking distance* from the number one children's hospital in the US.

Kate will be moving to Bedford, PA. 

Three hours away.

I can't see any reason where I would ever want to put my daughter at this sort of risk. No reason at all. 

krowface: xenomorph in full lotus position (Default)
Every day I spend without hearing my daughter's laughter is another day where you murdered me.
krowface: xenomorph in full lotus position (Default)
Alex lives within seconds of the best children's hospital in the nation. What is going on that its worth changing that? Is someone in immediate danger?

This is only until her next surgery. Then we can all go our separate ways. Is this over dishes? Is this about getting someone's dick wet? What is worth dropping the active response time when my daughter's lips turn blue?

So what is going on that is so goddamned terrible that you're willing to risk my daughter's life, but somehow not a single other person in either of our lives knows anything about it?
krowface: xenomorph in full lotus position (Default)
As of next week, our family goes back to our regular routine of hospital visits and sleepless nights. It's time to start gearing up for her final surgery.
krowface: xenomorph in full lotus position (Default)

My daughter Alex wakes me up at sunrise. I immediately make her a bottle and then we both go back to sleep. Then she's start making little bird noises to get my attention. When she catches me looking at her, she starts smiling and bouncing in her crib. 

In the kitchen I'll feed her a few pieces of fruit while I brew coffee. 

The morning is me doing the following:
1. Check my e-mail.
2. Check facebook notifications.
3. Read news feeds while I drink coffee.
4. Post and share whatever needs to be shared. 

While I do that, Alex is watching her daily dose of educational shows, or she's sitting in my lap and we chat away or I'll read random things to her.

At breakfast I wake her mom, then I feed Alex, lay her down with a bottle, and then try to cram as many hours into work* as possible. 

Then after he brief nap, it's whatever Alex wants to do while Kate and I clean up after her.

Lunch happens at some point. Alex is down for her nap and I cram more work in. Once her afternoon nap happens, if it happens, her and I stay out of Kate's hair while she gets ready for work. 

So that's really that. Stay tuned later when I post what I do with the rest of my day...

*Usually it's my website stuff in the morning, and Mjolnir in the afternoon.
 

krowface: xenomorph in full lotus position (Default)
In case it needs to be said, even though I would hope everyone out there is smart enough to get it, but having a kid changes your priorities.

I must raise my daughter the best way I can, and to do so, I have to have a sort of serious structuring about the things that happen in my life. I can't control everything, but I can certainly shut my door against people I feel shouldn't be allowed in my living room. Not when the shit they say or do would be seen in a favourable light by my daughter. She is going to be raised well. I have no other goal in my life, no greater wish, no stronger desire. I am very serious about this girl being raised right.

And as such, I have to be very aware and very crucial of how people act around my family. Every person who stands in my home stands in front of my daughter, and while I cannot control the things people do out in the streets around her, I can damn sure control what happens in my house.

If I am willing to kill a man over baby formula, what else would you think I am not willing to do?

...

I am so content right now. My daughter has been astonishing this past week or so. The one thing is not doing right now is crawling forward.

She rolls easily onto her back, she can crawl backwards and pull herself up into a sitting position. She can launch herself forward and roll around a lot. She can stand on her own with very little support. Usually me... but I saw her do it using furniture today. She flaps her arms like a duck when she's excited. She kicks and kicks when she's pissed. She screeches to show her displeasure, and she's getting to the point she's starting to experience frustration. Which means she *knows* she can do things. Which is probably the best part of all of this. She's becoming self-aware.

I play this game with her where I try to coax her forward, and I applaud her when she moves forward. It's awesome.

The sleeping arrangement is unusual. Due to a lack of furniture, I have to sleep on the couch with her. She's big enough I don't have to worry about crushing her. So she's the little spoon, and she's awesome at it.

I wrap my entire hand around her torso, and I tuck her against my chest, and I can feel her heart beat against mine, and I can hear her breath whistle as she sleeps. Words fail me as I can't really explain it as well as I can. Not my fault, they should've sent a poet.

...

This is why I am willing to make the hard decisions. And why it has become so easy for me to do.

I still have more questions coming, but I will have the answers.
 




krowface: xenomorph in full lotus position (Default)

Really the first thing I need to talk about is my daughter. Not just because she's the most important thing going on in my life right now, but also I suspect she's the reason some of you are part of this mailing. In summary: "It was scary, but she's okay now," however I'm going to start from the beginning, just so everyone knows where we came from here.

Alexandria Rose was born December 27th, 2011. Delivered into this world via c-section the year Philly had no winter, she arrived with ten and ten, with a shock of blonde hair that can't stay calm. She was also diagnosed with Tricuspid atresia, a rare type of heart disease that is present at birth, in which the tricuspid heart valve is missing or abnormally developed. The defect blocks blood flow from the right atrium to the right ventricle.

Normally this is fixed in children with two surgeries, one that happens pretty early, and another that happens a few years later. However, as anything that is going to be my goddamned loin fruit, there are going to be difficulties. Because life is never easy for those that dare come near me.


The rest of the story can be found here. If you don't have access, e-mail me and I'll let you in.
krowface: xenomorph in full lotus position (Default)
I was going to update my livejournal from the hospital, but strangely enough, this place was banned from the hospital under "blogging/social networks", even though facebook was not. figure that one out.

Anyways, I feel like a truck ran over me. Kate and I are both hobbling along like old folk. Her mom is here, and with her knee injury she's moving faster than we are.

But we're home, and we're safe, and between feedings I'm trying to get my shit together enough to make a short "happy birthday" video for Alex.

ow. my back.

November 2016

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