Archive for August, 2013

Before George died (BGD) and After George died (AGD) are two separate pieces of my life, and try as I might, I can’t make the two meet.

This has led to me having a great deal of bitterness towards a great many things (and people). It has also made it very easy to overlook some of the good deeds that people did for me BGD. 

My grief has also made it impossible to see other’s grief. Though I think that in part that is because I still don’t understand how someone can grieve for someone that they barely knew. One of those things that sometimes I think I understand, but then as quickly as the very next day, I don’t get.

Anyways, back on track… This rage and grief though are a dangerous mix that, for the most part, I manage to keep contained. But when it spills over, it makes a fantastically horrible mess.

I hurt a dear friend of mine when that rage and grief spilled over. I know I shouldn’t have. But I could not stop it. It wasn’t even that much of it was directed at her, but enough of it was that it hurt her, and I can only imagine that it was hard to separate the small kernels from the whole overload that I unleashed.

I can’t regret everything that I said, because most of it needed to come out. A boil that needed lanced, if you will. It just didn’t need to be unloaded on to her. I should have written it out, or talked to one of my friends who knew how to handle the darkness in me right now. I was bawling as we talked, and had made up my mind to completely withdraw from basically everyone besides one or two people because of that rage and grief.

Because, like I’ve stated here before, most of the (few) people that I thought would stand for me when I could not stand, could hold me up when I was ready to collapse… they did not perform as I needed them to. They backed away.

Having time to think about it, I do see the points that she was trying to make. That it is hard to know how to approach someone who is grieving. It is hard to find the words to say.  And I knew. I KNEW how people were going to react. 

I would be lying to say that I’m not angry about how things played out with various people. But I would be lying if I said that it was the primary reason that I was angry. My anger comes from the fact that my daughter is dead. Everything else that I’m angry about is an offshoot of that.

I honestly do not hold much personally directed anger at ANYONE for their actions/reactions AGD. It is more of a broadly cast net than anything.

She tried her best to be a good friend to me, but I just don’t have the ability to see anything more than my pain right now. I cannot give/return, emotionally, when I have no good emotions in me.

I wish I knew when that was going to change.




Best. Pic. Ever

Posted: August 26, 2013 in Uncategorized
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Best. Pic. Ever

I’m still going to clean it up a bit in photoshop, but….best pic ever. EV-ER. Haha. Can you tell I’m in love with it?

Summer Fun Pic Dump

Posted: August 26, 2013 in Uncategorized
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Went to the grandparents this weekend…

Some of these I’ll post on my photography site, but for the most part they’re just snapshots.







Background: We knew that George had two POL-G mutations, and that they were different. We didn’t know what they were though.

FInally got a letter from genetics detailing, so..

Here’s your Q and A.

Q: How many times has the particular POL-G mutation that I and George have been seen before us?

Answer: 0.

I don’t think you can GET any more fucking rare than that. 0. ZERO. We are the first recorded cases of this particular mutation.

Now, K’s mutation is a familiar one. They have seen it before.

But my mutation + K’s mutation = the most severe case of POL-G manifestation SEEN. 


Chew on that one for a bit.

I miss my baby.

Posted: August 22, 2013 in Uncategorized

I miss my baby. I miss holding her. Rubbing her cheeks. I miss those rare bath times we got to do. I miss everything about her.

I miss being able to control my emotions.

I miss not crying every damn day, or nearly.

I miss G =(

Future Doctor, Meghan

Posted: August 21, 2013 in Uncategorized

We have to teach our children to know their bodies, and then we have to trust that they know their bodies. Especially with invisible diseases, we can’t just take a peek and know what’s going on. WE are our children’s greatest advocates, but the only way we can be truly effective is by listening to our children’s complaints, and giving them the attention that they deserve. Even if it means going to fifteen doctors until you finally get one that listens.


If they would just listen to Meghan.

I mean really listen, and stop dismissing her.

Since before she could talk we have been working to help this kid become more aware of her body.    She can troubleshoot what works for her.  She can tell me what foods and medicines help her or hurt her.  Every day she becomes more keenly in tune with herself.  Its necessary.  That is how we keep her healthy.

My heart always gets heavy for my friends whose children, despite everyone’s best efforts can not articulate their needs, pains, desires, or emotions.  Those are the situations where doctors might miss something- even if they are trying.  Those poor children might suffer needlessly if no one can determine the source of their discomfort.

But not Meghan.  If you will listen.  She will tell you.  If you pay attention.  You will understand.

If she hurts- the whole…

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Its hard to believe that next year, L will be starting school. Blows my mind that time has went by as quickly as it has for her. Soon I’ll probably have to start getting things together, and getting meetings set up to get a 504 in place.

Because, yes, L is doing good now, but an introduction into a school full of germy kids? And a kid who is considerably at risk for respiratory infections due to that one  junked up lung of hers? Let alone the IPAH? Bad. freaking. idea.

But K wants her to experience normal life as much as possible, and L is… well, super-social. Haha. So I’m not going to immediately deny her the chance to attend regular school. We’re going to give it a go and see what works out. However, we’re going to give it a go with some good safeguards in place.

That’s where the 504 comes in.

I’ve actually been thinking about this for a couple years now, and I think the three big things that I will not bend on are:

1.) Absence freebies. Whenever a certain percentage of the school is out with some sickness (cold, flu, etc), I will keep L home until the danger seems to have passed. Also, if she’s feeling under the weather, I will keep her home.

I don’t care if she misses half the bloody school year. Her health is more important than her education. Especially so when you consider that we don’t know how long she’ll live.

2.) She will go to a school that has at least one full-time nurse, and that nurse will be intimately acquainted with Pulmonary  Hypertension by the time I’m done with her. I’ve actually already had the beginning of this argument with the school district. I stated what school I wanted her to go to, and they told me that they couldn’t just place her like that. I responded “Great, so, my child collapses on the playground, having a PH episode, and because you want her to go to a school that only has a nurse half day, if that, and I get to sue the pants off of you for knowingly being negligent of my child’s health! Awesome.”

Didn’t go over too well.

Don’t give a knut.

3.) The cell phone. L will have a cell. It will be kept in her backpack/on her person at all times. It will have my number, as well as her daddy’s programmed into it, and if she starts to feel bad, she will be able to call us immediately.


Honestly, I don’t want her to attend public or private school at all. I’d love to find a babysitter that does home schooling, you know? I feel like that would be the best situation for her, but I’m also cognizant of the fact that we have to consider quality of life very strongly for her. So, as she’s a super-social little squirt, we do have to give this a try.

In some ways, to be honest, I am kind of looking forward to certain portions of it, though. Like the first time we get call from the principal, because L is being a freaking heathen. I look at her red hair, and at the family history of kids with red hair in my family, and I *know* I’m in for it.

And it just makes me grin.

Bring it, baby girl.