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. 

Yeah.

Chew on that one for a bit.

Advertisements

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.

beatingcowdens

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…

View original post 1,065 more words

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.

A Happy Day

Posted: August 19, 2013 in Uncategorized
Tags: , , , ,

Yesterday we took L to COSI. (For one of the best pictures, please click here.) She had a *blast*. Well, except for the part where she freaked out on the “‘venture.”

She oohed, aahed, acted like a heathen, climbed in a tractor, chased a goose, etc.

It was the type of day that we needed. 

We were there for something like 4.5 hours. When we came home, she was still raring to go. It was one of those days where it was easy to not worry about her health, because she acted so flipping energetic after a trip that would tire a lot of kids out.

She did wake up crying, and pouring sweat during the night, but I don’t think anything was wrong other than just too tired and wanting the comfort of sleeping with mommy and daddy.

At one point, she pushed a button that activated these robotic arms that ‘danced’ to disco-ish music. Never one to let anyone dance by themselves, even if they are just robots, L decided to start busting a move in the middle of the hall. Pointed fingers going up and down and appropriately horrible body gyrations ensued. 

Some days my girl can dance. She really can. Other days I want to tell her to never give up her day job. This was a ‘never give up your day job’ dance. 

She loved the farm machinery we took her to see…on the second go-round. The first time did not go over so well. But once we had spent some time in the building, then came back out to the exhibit, and she saw other little kids playing with the machines, she was all for it.

My li’l scaredy-cat.

 

Thank you

Posted: August 15, 2013 in Uncategorized
Tags: , , ,

To those who lent an ear,

Thank you.

To those who made cookies or sent chocolate,

Thank you.

To those who have reminded me that you’re there, even if I’m not able to meet you halfway right now,

Thank you.

 

The words to shame someone for the non-actions are plentiful. The words to thank someone are few.

A few of you I haven’t been able to thank personally because I can’t find your name on facebook, or what have you.

Someone sent Lily this awesome car book, but I honestly didn’t recognize the name of the person who sent it at all.

Some I just haven’t thanked enough.

 

Thank you. In some cases, you literally don’t realize how much you’ve helped. I know I’m hard to understand sometimes, because even I have trouble understanding myself.

You’re all shiny, awesome, and I do appreciate that you are helping in the ways that you can.

 

And if you ask, I’ll deny I ever wrote this, because I have a reputation as a b!tch to maintain, dammit!

That when you don’t obey societal norms even in something as intensely personal as grieving, how much flack you can get.

Because I do a blog that I talk about things straightforwardly on, I apparently tick some people off.

———— Could this be because I force people to ask themselves uncomfortable questions?

Because I can say straightforwardly that my kid is dead, people flinch away from me, and act like I’m some sort of heartless monster.

———————-My kid is dead. I’ve grieved for her. I will always grieve for her. But life goes on. Bills need to be paid. My other child needs me. Etc. There’s just no point to wailing in a corner, wearing black all the time (though I do frequently anyways because 90 percent of my clothes are black), and putting my pain and suffering on display. My pain is exactly that. MY pain. If you can’t handle that I’m not sobbing on your shoulder so that you can feel like you’ve *done* something, well…sorry. 

Now whether I’m saying I’m sorry, or saying you’re sorry…that’s up to you to figure out.

Because I reject most flowers, and make my dislike of cards known, so it must obviously a be a personal snub. I must be a snobbish grouch.

———-Uh, no? But keep your meaningless cliche actions to yourself, and buy me a meal, coffee, or a box of tissues instead.

Because I’ve suffered a loss, so many people that were supposedly great friends of mine have withdrawn so quick I can see the smoking tracks of their feet in the distance. Yet, I’m supposed to feel guilty about this? I’m supposed to initiate all the conversations? Uh… no. I’m not asking for deep insightful conversations where I gripe and moan about my life. Sometimes I wanna discuss supernatural and gripe about food, dagblastit! But it is what it is, and I need someone to pull me into that. I just don’t have the mental energy to keep reaching out to people.

…. Its also interesting that so many people seem to have already brushed George and me off. She’s dead, and I’m reclusive because of the sheer amount of hurt I’m in, so … out of sight, out of mind? Just another dead baby that isn’t theirs, so they don’t have to worry about it.

…………..

Side note: I recently took an Asperger’s Assessment, and scored high enough that I should apparently get evaluated professionally because I meet the criteria for having it.

That would explain a lot.