Posts Tagged ‘anger’

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.

 

 

When I was pregnant with L, I became friends with a great group of women. When L was having all her initial issues, they really supported me, and for that I will forever be grateful for them.

With that being said – I no longer talk to 90 percent of them. I own up to it. I took that step myself. Deleted the majority of them from my facebook page and from my phone. At the moment I have about 60 people total on my ‘friends list’.

And I know they wonder why. Just like I know that I can probably never really make them understand.  But I think that any other parents reading this, who have very sick kids, can understand.

I did it because I had to. I did it because every time I logged on or talked to them, I saw multiple posts of obviously healthy babies. I saw complaints about their kids having colds, or keeping them up all night. I saw gripes about colic and plans for the future. I saw it, and I was jealous. I saw it, and I felt rage.

Not rage or jealousy specifically directed towards them, but towards the world in general.

THEY got to make plans for the future. THEY had healthy babies. THEIR biggest concern at the moment was an earache or a cough. I don’t get to make plans for the future. I don’t have healthy babies. L will probably be dead when their kids are graduating high school.

And I can’t do that. The longer I was in that situation – of seeing SO many women who had it so good – the more depressed I became. The more my anger showed. Why did *I* have to have the so-sick baby? Couldn’t the problems have at least been distributed a little bit?

Yes, there were some babies who had some issues, but I think its safe to say that L by and far had it the worst.

…and now that I have G? Now, we know why I have sick kids. That doesn’t make it any better, though. It doesn’t make me stop wanting to scream and cry and shout and rage and WHY THE FUCK DID THIS HAPPEN TO MY FAMILY?! It just means that I have two sick kids. It means that whenever I hear about someone who is pregnant again, and I know that they’ll probably luck out and have another healthy baby… Its double the pain. Its double the rage.

I feel like the universe is giving me the finger.

So I distance myself. I cut myself off. I wish them the best. I genuinely hope that they all have wonderful full lives with their children. But I won’t. So I can’t – I refuse – to hurt myself even more by seeing hundreds of images and thoughts of ‘what could have been’.

What I deal with is what is, what was, and how am I going to handle it when the end approaches.

Yes, its selfishness, but its also self-preservation.

I’ve been messaged by a couple people offering to talk, and the only thing I can think is “How would you understand? How could you understand? You can’t, and I’m glad for that, but it doesn’t help me. You can’t help me. I wish you could. I really, really wish you could. But you can’t. So please, just don’t offer something that you can’t follow through with.”

Its kind of a case of “Its not you, its me. I love you, but I never want to see you again. ”

I wish I could make them understand. I wish I had the energy to try.

RELIGION

(Side note: Its taken me a couple days to write this post because I had to calm down before I could do it. I was that mad over a particular incident.)

Different people believe different things, and that is their right. However, people really need to learn to exercise basic common sense when they’re dealing with parents who have terminally ill and/or critically ill children.

Let me put this simply for those of you who might not understand: Take the parents’ lead. If the parents are not reaching out, expressing their faith, and the questions of faith that might arise when they have a situation like this, then you do NOT need to bring God into it.

Some people it might comfort. Others it might piss off. I’m in the ‘piss off’ category.  If you do feel the need to bring God into it, and you cannot keep your mouth shut, then at least listen to what the parent(s) are saying. If we’re saying stuff like “I never understood the disdain that atheists had for religious people until this very moment”… You can be fairly sure that its time to be quiet. Because all you are doing is causing hurt and/or anger.

But you know what’s even worse? When people acknowledge that they know they’re pissing you off and/or hurting you, and they KEEP DOING IT ANYWAYS! If you can acknowledge that you’re screwing with the emotions of someone who is already stressed to the limit, and you continue to do it anyways then you really need to stop and think about what you’re doing. You really need to think about it. Because, wow, while your talking about God and how that person’s children are super special in their own way, etc, etc, might have made YOU feel better? If it hurt the parent that you’re talking to, it doesn’t matter if it made you feel better. It doesn’t matter if you felt you had to say it.

You, my friend, are acting like a jackass.

Maybe you’re a well-meaning jackass. Hopefully it was just a temporary moment of jack-assery, but nonetheless. You’re acting like a jackass.

I went from having a decent, though stressful, day, to being so flipping angry and hurt that I wanted to put my fist through a wall. I genuinely like the person who put me this position, but after feeling like my obviously expressed thoughts were being blatantly disregarded so that this person could say what they needed to say… I don’t know if it’s a friendship I can maintain.

I don’t know if it’s a friendship I want to bother trying to maintain.

I’m going to give it some time, and see if I can talk to this person again someday. But I make no guarantees.

My relationship with God is my business. My rage and hurt towards him are something that He and I need to work out on our own, if we ever do.  I do not need my expressed fears about my children and any decisions I might have to make regarding them to be answered with consolations about God and a higher reason.

My kids are sick. ‘Higher reason’ can kiss my rear.

The good news is G is still off the vent.  However, she’s at 4 litres of oxygen, at 60 percent. (Room air is about 21 percent for reference.) The doctor did say this morning that as long as her blood gas (the CO2 level specifically) was good, they would not reintubate her. So, here’s hoping it stays good.

She’s not tolerating weaning down at all. It concerns me. I also noticed on her most recent growth chart that her head circumference had fallen down on the charts. Now that can be explained by different people doing the measuring, but still… If I’m recalling correctly, microcephaly can have an association with PVNH. Microcephaly is generally linked with severe developmental delays and other problems to boot. So, please let the person measuring G’s head simply have been an idiot who can’t do a head circumference correctly.

G is in the 90th percentile for length! A whopping 23.3 inches.  She’s about 40th percentile for weight, coming in at a grand 9 lbs, 12 oz.  She looks chunky!! It kind of doesn’t make sense that she seems to be struggling so hard, but she’s gaining weight like a champ. Then again, they are giving her 80ml (or 2 and 2/3rds of an ounce) every 3 hours. But that does mean a couple things.

1.)    G can’t be too allergic to soy/dairy if she’s gaining weight like this.

2.)    My milk is doing a fantastic job of providing the calories she needs.

3.)    I should have told the doctors who told me I couldn’t breastfeed L to suck it!

She’s still receiving sodium chloride to assist with raising the sodium level in her blood. I don’t know how long that’s going to continue for.

Oh, and she’s taking caffeine. This irritates me. You know why this irritates me? Because I brought up using caffeine on her WEEKS ago, and was told no. That they hardly ever do that. That there’s no way they’d send a baby home on it. Uh… lo and behold, they’ve got her on caffeine, and have already said she’d probably come home on it.

I feel like its another case of “Lets not take the mom seriously. After all, she doesn’t know what she’s talking about. She doesn’t have a medical degree.” As near as I can remember, I have called almost every bloody thing at least a day before they did! The only things I didn’t have a clue about where her co2 and sodium levels, along with the brain malformation.

Grrrr.

…..

Anyways, you know what one of the most horrible feelings is? When you’re trying to pump, but you haven’t had time to grab anything to drink, so you know you’re dehydrated.  Then you’re trapped in your daughter’s room, which is in isolation, so its not like you can just jet out to get something to drink. Plus you’re waiting on the doctors to show up for rounds, so it’s a matter of how long you actually have before you have to do a frantic disconnect-and-tuck so you can be at the doorway listening to them. Half the time I get this look like “Eh..you didn’t have to be right here. You could have listened from over there..” Yes, I could have, but no, I won’t. My kid. I have a role in her treatment. Flat-out. I wanna know everything, even if its amazingly hard to handle sometimes.

And it is. I wish I could just blindly place faith in the doctors, but I can’t. I won’t. I refuse to be the little sheeple person who sits back and doesn’t even bother to educate herself to prepare for things. When you have an ill child, it is your responsibility to learn everything you can. To participate in any way you can.

You really are your child’s best advocate. You are the only one who really, really knows your child. And maybe its wrong of me, but I’m going to even say that in 95 percent of cases, the mother is the best advocate, because I think we notice more than the fathers do. Now there’s always crappy moms and stuff like that, so it doesn’t always apply, obviously.

Today is not a good day. Today is a ‘I feel like this is hopeless’ day. I honestly wonder if I’m ever going to bring my baby home. And if I do…am I just bringing her home to die? You wouldn’t believe how much that tears me up just to think about it.

Oh… yeah… I’m going to do a separate post about Religion. Its not going to be nice, so if you are a bible-thumper with a righteous indignation fire easily burned under your rear… don’t read it.

Well, when I’d posted the last update, G wasn’t on CPAP yet and we weren’t for sure if she was going to go on it or not.

G is on CPAP now. I called the hospital around 8:30 night before last and asked if they’d done the blood gas levels and if so, how was she doing? The nurse told me that G’s CO2 level in her blood had actually increased. It had went from 85 clear up to 92. Needless to say, that was so not good.  The normal levels of CO2 in the blood are around 40. Click here for more information on CO2 in the blood (and in general if you want to read the whole thing).  The condition of having too much CO2 in the blood is called hypercapnia.

From Wikipedia

“In severe hypercapnia (generally PaCO2 greater than 10 kPa or 75 mmHg), symptomatology progresses to disorientation, panichyperventilationconvulsionsunconsciousness, and eventually death.”

(Okay, side note: Normally you do not use Wikipedia as a reference for things. However, if I list Wikipedia, its because I’ve done my best to verify the information that I’ve found, and have  linked Wikipedia because its generally written in terminology that is easier for most people to understand.)

They believe that the hypercapnia is caused by her hypoventilation. Hypoventilation, put simply, means that G doesn’t breathe in OR out deeply enough to maintain the correct levels of oxygen and carbon dioxide in her body.

When I talked with the doctor yesterday morning, what she told me was that she did not believe that – and I have to stop here and say that by the time I’ve actually written this sentence, I’ve tried about ten different times to put it into words – G will ever be able to ventilate correctly. She does not believe she is going to get better. Because all problems seem to link back to G’s brain, and you can’t fix the brain, G is… Well, she’s screwed. Plain and simple. She’s screwed.

She cannot come home without a solution to this problem. She cannot come home on a CPAP. She cannot come home on a high flow of oxygen.

When I asked the doctor where that left us in regards to her coming home, the doctor mentioned some ‘treatments’. One involving a medication that she did not seem keen on using. She did not mention the  name, so I can’t link it for you. The other was – if the problem with G’s breathing had anything to do with the same reason she was diagnosed with obstructive sleep apnea – putting a tracheal tube in.

G is not coming home any time soon. Our new goal is to have her out of the hospital by 3 months old. She’s 6 weeks old now.

….

You know, the medical stuff is always easy to write. Its, pardon the pun, something that can be done very clinically. You don’t have to get your emotions involved. Its after the explanations are out of the way that things get difficult.

Its that 6 o’clock in the morning when you’re sitting up, sleepily pumping, and don’t have anything to really distract you that’s hard.

Its that moment when you’re alone with your baby, looking down on her smoosh-face, and feeling the last vestiges of the hope and dreams that you’d so tentatively built up  crumble into dust.

Its knowing that because of some stupid genetic mutation, you will never know normal.

Its realizing that you should have known better than to procreate – given the fact that you’ve never even especially liked kids to begin with when you were younger. For that matter you still don’t really like any kids but your own.

Feeling the horror slowly slipping through your defenses, honestly believing that the only reason you’re still standing is because you don’t know how to fall down. Or maybe that you fell down a long time ago, and you’ve adjusted to viewing the world through sitting down on your bruised arse.

Trying to remind yourself – trying so very, very hard – that others have it worse than you. That others are dealing with things you couldn’t handle.

Finding out that what others are going through, or have gone through, doesn’t really help to give you strength any more.

Wishing well-meaning friends and family would understand that you hate hearing the word sorry. Sorry doesn’t help. Sorry doesn’t make anything better. Sorry does nothing but remind you of what a crappy situation you are in.

And on a purely frustrated, omg, I can’t freaking BELIEVE my bad luck – my camera died. Kaput. Given up the ghost. Gone to shutter heaven.

My camera. The one that I depend on to take great pictures of my kids with. Because while everyone else I know will have lots of years with their healthy, or nearly healthy kids, I have to face each day with the realization that I most likely won’t have all that time. That I have to take a ton of pictures because in the end that’s all I’ll have.

A great friend is giving me an old one to tide me over, but I’ve got to start putting back money to buy a new one immediately. My camera breaking is literally enough to put me in tears. I depend on it so much.

I’ve also got to buy a deep freeze to store G’s milk in – gotta start stashing on the expectation that eventually she WILL come home.

I’ve also got to buy a travel system for her too – because, dagnabbit, we are going to take walks, even if we have to take half the flipping hospital with us as support.

I want to curl up in a ball and cry. I really do. God, do I want to. I even started taking happy pills last night. Lexapro for the NICU mommy’s soul! I can’t curl up and cry though, because my kids need me. Also because I’m afraid at this point that if I did start crying, I wouldn’t stop. And, you know, crying for that long would be bloody inconvenient.