Archive for July, 2013

L has been showing some signs her Pulmonary Hypertension(PH) is acting up lately. Its been little things, but its enough to make your heart start to clutch.

She was laying beside me on the couch one day recently, and breathing hard unexpectedly. When I asked her if she was okay, she said something along the lines of “Yeah, mommy. I just ran too hard.”

…She hadn’t ran around at all in a good 20 minutes.

You have to remember, L is only 4, so her method of telling us when things bother her can be a little offbeat.

I’ve noticed several instances lately of her breathing hard when there doesn’t seem to be any reason for her to be breathing like that. However, I have to remember that…she’s 4. They do weird crap for no apparent reason.

She was also at the grandparents house, playing in the swimming pool, and apparently her lips went purple really quickly.

One of the problems with an ‘invisible’ disease is that I can’t take a peek inside her and see how things are working. All I can do is observe the symptoms that pop up, and try to put the puzzle together to see if its turning into a big issue.

With our astounding luck, its turning into a big issue. Because why would I have reason to think otherwise?

What I’m telling myself now is that: Even if it is turning into a big issue, we have options. She’s been on the same dose of her Tracleer for *years* now. She’s been on the same dose of lasix for a little less than she’s been on the Tracleer. She might just need a med adjustment.

Maybe we’re hitting that part in the cycle where she needs to be on oxygen again. This is the longest we’ve ever been without it. I thought we were past the need for it, but maybe not.

(I don’t know if I ever mentioned this, but L and o2 have a cyclical relationship. Sometimes she needs it all the time, for an extended period of time, then she only needs it at night and when she’s having a rough go, then she won’t need it at all.)

I’m telling myself this stuff rather frantically. I have to, you know. Because its a waiting game. Yet again. And we all know how well those go.

 

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The Quiet

Posted: July 30, 2013 in Uncategorized
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The Quiet is a horrible thing. Its a deceptive entity that you can only enjoy as long as you don’t truly understand what The Quiet is.

The Quiet is a chance to think. To think in ways you cannot control. It seizes its chance as soon as it can, and the memories it unleashes are a veritable tidal wave, swamping you in an instant – no chance to outrun it- and the powerful tides pull you under.

You fight and claw for the surface, sometimes losing sight of which way is up. Sometimes just wanting to stop. Just stop, take a deep breath under the surface, and let yourself drown in the pain that you know will never go away.

The Quiet is an evil thing. Its at its strongest when anniversaries are near. Its invisible fingers easily draw blood from your heart, and essence from your soul. You know that one day it will accomplish what time has somehow not yet managed to, and it will shred everything you are into pieces that are too tiny to put back together again.

And then it will retreat, and it will wait for you to come to it.

To come into The Quiet. To walk willingly into it, until you are completely submerged, and smile as you take a deep breath.

Because that’s how it works. And there is no escaping it.

Photography website…

Posted: July 29, 2013 in Uncategorized

For the moment, until it proves otherwise viable, I have a site for photography set up on wordpress.

Please go to rare2photos.wordpress.com and check out the stuff posted there.

These aren’t photographs of George, but ones that I’ve taken that I wanted to put on here just because they’re pretty and they make me smile.

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L with K – Over-exposed shot taken at the zoo.

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I ❤ my Monster.

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Pretty, yes?

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and this one..

and finally..The original pooh-bear! Image

Genetics

Posted: July 25, 2013 in Uncategorized
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Yesterday I talked with genetics again. The test results for K and I came back. We both have 1 normal, one mutated copy of the Pol-G 1 gene. Any kids of ours have a 1:4 chance of having 2 mutated copies of the Pol-G 1 gene.

This is what happened to G.

She had NO working copies of the Pol-G 1 gene.

They’re going to send us something in the mail, explaining things in depth, but that’s the essence of it. They also said that there were ‘options’ for future pregnancies. I don’t see why I’d willingly go through this risk again, but whatever. They can write what they want.

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I got a card from the NICU yesterday. It had notes inside it from the primary care nurse for G, her physical therapist, and a few others. I’d had a crappy day as it was, but reading their notes just caused me to instantly start sobbing.

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Obviously its hard to avoid the news, and so when I came across the lovely fact (sarcasm here, folks) that the “Royal Couple” had named their kid George, I wanted to throw something. Because so many people are freaking SHEEPLE I know that name is going to experience a massive resurgence, and its going to be everywhere now in kids that would be close to George’s age. Lovely.

Seriously, why do people do that? Name your kid after someone you *respect* , not someone who is famous just for being famous, or royal, or stupid, etc. 

Newsflash, people, we actually sort of – you know – fought a war to get out from under the monarchy, so why do people want to have their heads buried up that family’s rear? 

I had to take a break from facebook because that was all that was being discussed. Its a kid. Its a kid that will always have the best doctors, and have the freaking easiest life possible. Yay for it.

Yes, I’m bitter right now, and no, I really don’t care. My George should be here. My George should be in my arms. I should get to see my baby smile, and watch her grow. Instead I’m going to be constantly confronted with her memory, the fact that we couldn’t save her, that I made the decision to take her off support, etc.

Woo-hoo. Life is *freakin* awesome! (And if you didn’t catch the sarcasm there, do me a favor and go remove yourself from the gene pool.)

 

 

I have many things to rant and rave about, but this is going to be a positive-ish post.

I bought a good camera while George was still alive. I can take excellent pictures with it. I have photoshop for the errors and the enhancements. 

Im offering my services via March of Dimes and hopefully word of mouth to do frequent pictures of children with chronic and/or terminal illnesses.The way I hope to operate is, honestly, to not charge anything. Just to accept donations to cover gas and hopefully to help buy more equipment.

But, knowing how many medical bills can pile up with a sick child, if they can’t give me a dime…then they can’t give me a dime. It happens.

Right now I’m offering to do pics of healthy kids for free, just to get in more practice. Maybe at some point I’ll start charging for the healthy kids, but I don’t know. I’d prefer to just drop the healthy kids and do only sick kids. That way not a moment is wasted from the ones whose time is most precious.

Eventually, at some point, I want to take classes (Ie: when I can afford it), but I have enough talent and basic understanding right now to see me through. I’m buying equipment piece by piece with each paycheck. Small items. I need an external flash but thats $200.00 not including the light stand and stuff. I’ll get there. It’ll just be something I save over a couple paychecks for.

We’re planning G’s memorial garden. We’ve narrowed it down to one of two trees. I, and KbyK, are researching proper plants. I’m working on a basic landscape design. I think I have an idea on it. K wants to use Ohio native plants. I’m trying to work with that as much as possible.

All the money from selling the stuff I should be using with George right now is going into the Memorial Garden Silver Piggie. It should net us a couple hundred.

God, I’d rather have her here =(

If anyone out there knows someone who might donate a couple hours to helping figure out this landscaping thing.. that’d be awesome.

I miss my baby =/ It gets worse instead of better. Its hard to put one foot in front of the other anymore.

When I think about the photography thing, I think “What am I doing? Its gonna hurt fresh every time I go to take these kids pictures…” but then I think “This is what I can do. This is what I have to do. If I can bring even a small measure of comfort to other parents who are going through what I have went through (and am going through currently if you think about Ls illness), then I have to do it.”

I have to. I don’t necessarily want to, because I’m selfish, and it hurts. =( But I will. And they will be fucking awesome pictures, dammit!

I just made sure the March of Dimes lady understood that I was not able to NICU shoots at this time. For obvious reasons. You know, like the part where my baby hasn’t even been dead a month yet. Because, yeah, sometimes you have to make that clear. -.-

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George…

Posted: July 19, 2013 in Uncategorized

My baby’s name was Rosalinde George. I always referred to her as G on here. We always called her George.

 

George was born on April 6th, 2013. It was a Saturday. She was admitted into the NICU by Dr.  Davis.

George died on June 29th, 2013. It was a Saturday. She was discharged, for lack of a better word, from the NICU by Dr.  Davis.

George died because she was sick. George died because her body was incapable of sustaining life on its own. George died because she had a mitochondrial disease that was ravaging her body.

George died because we chose to let her go.

There’s more that I could tell you, but that I can’t right now. Suffice to say that we were suddenly put in a situation where we had to decide if we needed to make that choice. And we did.

I will not say that we  needed to make that decision, but I will say that I believe to a margin of 99.9 percent that it was absolutely the right decision to make.

Why do I say that I won’t say we ‘needed’ to make that decision? Simple. Because we could have kept her on a vent 24/7. We could have kept her in a hospital bed. We could have spent more months or years watching her body struggle to fight off infection after infection. We could have spent months or years pumping her full of drugs. We could have… Maybe at some point, we could have brought her home. And there would have been frequent hospital readmissions. There would still have been the knowledge that our child was suffering. That she had no quality of life. That we were forcing a life upon a body that simply was not meant to be alive.

We chose not to do that. We chose to set her free. To give her the one gift that we could give her. And yes, it was a gift.

It has destroyed us, but it truly was the most loving gift we could give her.

Do I still have moments where my heart and soul cry out that I killed my baby? Yes.

Do I think I will always have those moments? Yes.

Do I sometimes torment myself by thinking that I should have prolonged her life even more? That I should have transferred her to a different hospital, even knowing she most likely wouldn’t have survived the trip? Yes.

If I could go back to June 29th, knowing what I know now, would I change that decision? No.

Unless you have lost a child, you can’t even come close to imagining the sheer amount of pain that your soul drowns in. You wouldn’t believe the black hole that opens up and swallows your heart whole. The demons of doubt that rake across your mind almost every. single. second. Your stomach is replaced by a thousand pound weight that somehow manages to knot itself up.

My baby is dead.

I do not believe ‘she is in a better place’, but I DO believe she is no longer suffering. I DO believe that the life she would have had would not have been any life at all.

My baby is dead, and I miss her so much.

My baby is dead, and I miss her possibilities.

My baby is dead, and with her, so are my hopes of ever having a halfway normal future. Most of you will not understand what I mean by that. Maybe one day I’ll explain. Probably not any time soon.

I will do other posts about other things related to this, but this post is for George.

My baby is dead, but my love for her is not.