November 10th, 2006 by Atomictumor
I was planning on coming to write to you of persistent vegatitve states, of things worse than death (what Selena was telling me yesterday), of conversations during the Schiavo thing. Of decisions, intentions, black and white and shades of grey.
I had all that planned.
Truth is, this is harder than pondering her demise.
Truth is, a half dozen of you in there told me that you had bleeds, or knew of someone that did. I’m sure it happens. Dr. Gavin told me that it usually happens in older brains, and that a younger brain (as fantastic and amazing as hers) will have plasticity (to borrow GBscientist’s term. He’s my cousin, by the way, and yes, Joel, more pedantic than you) that an older one wouldn’t.
That said, I’ll tell you its a “good sized bleed” to use Joy’s words. She had three. Two little ones, and that one good sized one.
My mind says “whatever, she’s going to be fine”. My heart says “whoa… we need to talk”.
BJ, if you’re reading this, then all that I say is moot. If you’re reading this, then God has blessed us, and you are mobile again. If you are reading this, then you’ve read all of this, and you laughed, and cried, and while I can’t share your experience (as much as I want to), you’ve shared mine.
BJ, if you’re reading this, please don’t think less of me for what I have to say.
—
How can I love her if she’s devolving? I’m almost afraid that my emotions are distancing themselves now.
What the hell kind of bastard, a selfish, narcissistic, wanker, would that make me? Does that make me?
I love her, but since last night, I’m afraid I’m saying that desperately. To tell myself, not her. Its been so long since I’ve seen her, really her. That glimpse by the van the other night wasn’t enough.
I slept last night. I didn’t bother calling overnight. Pam was there, sure, and I’d have gotten a ’stable but critical’.
Systemically, she’s doing better. I can’t call and say “hey, hows that brain damage doing, ladies?”
This sucks. This absolutely sucks.
I think, tho, I’m overthinking it, and beating myself up, despite my intentions of Wednesday.
I think I’m recognizing that I need rest/food/sleep/help too, and feeling bad because I’m not giving it all to her. I don’t want to be human, I want to be her love.
I pray for strength. I normally don’t pray for myself, the times I’ve broken my agnosticism was when it was for others (”please let BJs tooth feel better”, “Please let G’s ear infection heal”).
—
Pigpen has a little bit of a fever. BJ’d be stressing. Poor kid. I’ll give him a hug tomorrow, but Daddy hugs don’t usually do the trick. Next week we begin real life again. I’m really not looking forward to that.
I love you, my BJ. Please, please, please don’t think less of me. I’ll hold out my hand, and dedicate myself to you forever and ever. That hasn’t changed.
I’m just weak, and need some coffee and music.
Honey, I love you. God, please bring her home to me whole.
November 10th, 2006 at 11:07 am
“What the hell kind of bastard, a selfish, narcissistic, wanker, would that make me? Does that make me?”
A tired, emotionally stressed male. Let it blow by. Rest, eat. Rest some more. Pray. Love on your babies.
Prayers….
November 10th, 2006 at 11:09 am
yep - exactly what Perry said. {{hugs}}
November 10th, 2006 at 11:11 am
Please be kind to yourself. It is perfectly reasonable to have the kinds of thoughts you’re having. I would be. I think anyone would be. And most of all it makes sense just to wait and see. Hang in there.
November 10th, 2006 at 11:11 am
AT, you’ve been through things this past week no one should ever have to go through. And you’ve done it with an amazing amount of strength and dignity. Do not beat yourself up.
We’re still praying as hard as we can for you all. Like the others have said, I wish I, too, could make all this better for you.
November 10th, 2006 at 11:30 am
Continuted from Shoutbox so that GAC can read it later … With so many prayers headed GAC’s way, brain bleeds are not a problem. She is so loved, and so lucky. Miracles have happened, and there is nothing that can stop them.
Trust those of us that are removed enough from the situation to see. It is like a wave … it crested the other day, now we are just all riding it until she gets home.
November 10th, 2006 at 11:31 am
Yeah, you’re overthinking it, AT. I know easier said than done, but relax.
November 10th, 2006 at 11:39 am
I am heartbroken from reading your lovely tribute. Pain and love shine through your words. Brain bleeds are difficult but not impossible. Allow yourself to feel whatever you are feeling without guilt! GAC will always know you love her. My mother had a massive brain bleed 5 years ago; 6 months later she was on the golf course. Love coming your way.
November 10th, 2006 at 11:43 am
Hang in there. You’re right that the brain is a mysterious and amazing thing. The fact that she is young bodes well. You’ll know more when she wakes up and then you can help her relearn anything she may have lost. We’re keeping you in our thoughts!
November 10th, 2006 at 11:58 am
Words are so inadequate most of the time. They do a decent job when we’re bitching about a child’s teacher or wondering when it’s time to go home, and most of the time they succeed in getting us what we ordered for lunch, but when things get complicated and heavy, the words float up to the top and we’re left floundering for something to help.
So, I can’t come up with good words. Just know that you’ve changed my day simply by writing, and I’ll be thinking of you after I log off, and I’ll be checking in, because that’s all that’s within my power. Just words.
You’ll be okay. Someday. Even when you don’t think you’re supposed to be.
November 10th, 2006 at 12:04 pm
Hang in there, AT. She has a lot in her favor (youth, plasticity, and your devotion to her most of all). You, too, have youth and resilience on your side… and a whole lot of friends willing to listen or carry you through this if need be.
You know about managed expectations, right? Just remember, they told you “slim chance” and she beat the odds. She’ll make it through this.
November 10th, 2006 at 12:06 pm
Boy, this is a big lesson in staying in the moment. If I were in your shoes, I think I would be absolutely terrified to lose the person I loved, not to death, but to a vegetative state. I’d probably be more terrified of that than I would of their death. That doesn’t make you selfish, it makes you human.
November 10th, 2006 at 12:08 pm
AT,
I know my first post was eaten by the dog and Bos asked me to recreate it, but I couldn’t. Now I am just gonig to repeat a little of it here, because it seems appropriate. My only grandchild was born 18 months ago. The next morning she suffered two strokes. What I didn’t say before was that they were two “massive” bleeds, worse on the left side. I have an uncle-in-law who is a child neurologist and had the MRI sent to him to read to me in non-MD talk. Massive damage both sides, left much larger. It was not hopeful at all. She had seizures for weeks, she wasn’t sucking, eating, thriving, barely breathing. If she did make it, it would be as a cripple or with little brain function. Now 18 months later, for no reason except prayer and/or a miracle she is fine. Perfectly fine, so far. I know you want to remove that “picture” the doctor showed you from your mind, but those scans don’t show the entire human ability. I wish I could show you my g-babys scan and then you could watch her dance around the tv when Elmo comes on.
“What the hell kind of bastard, a selfish, narcissistic, wanker, would that make me? Does that make me?” I guess the same as me and maybe all mankind if they were in your position. I had the exact same thoughts. My daughter and her husband were young and incapable of handling the experience at the time and all I could think of was how will I be able to care for her, how can I fit that into my life, I have to work, money is tight, I have two other kids….how will I ever have the time or energy to care for a baby with cerebral palsy, or paralysis, or retardation (I know not a PC phrase, but its what I was thinking). Your thoughts are natural and not wrong.
You will get stronger daily and I am praying that BJ will also.
Vickie
November 10th, 2006 at 12:09 pm
You’re love for her is so honest and true This has been so hard on you and maybe real life is what you and your kids need to help you get through this. They need you more than ever now. You need to be their rock. Kids feel a lot more than you can ever imagine and you are doing absolutely great by them! Be their security and let them see how much love you have inside of you.
November 10th, 2006 at 12:10 pm
AT stick with it. You are human, you will have moments of stress, doubt, concern, pain, anger, etc. She will becoming home to you and she will be whole. God did not bring her from the brink to keep her on the cusp. I do NOT know all of God’s will, but from what He has shown me in the past His solutions and results are always higher and grander then we can imagine.
Know we are praying and that He is moving mightily via medical, spiritual, emotional and physical means. Now rest up knowing God is in control. We will continue to pray for His wisdom, His healing, His care, and His support for BJ, you and all others involved. As we have said before we will not stop praying until the situation is resolved.
November 10th, 2006 at 12:21 pm
Please do not beat yourself up. You are human with a huge plate of stress to deal with right now. Everything you are feeling is NORMAL! And you are right, you need to take care of yourself. For you and her and the boys. Eat well, sleep as much as possible and exercise. It will help you, it will, it will. And then have faith. Prayers from Katrinaville everyday.
November 10th, 2006 at 12:35 pm
You guys are totally right. I’m letting this get over my “I will not beat myself up” thing, and thats just dumb.
Truth is, I should have been prepared for this, and I wasn’t, so it snuck in there.
I will resolve to not beat myself up, to live in the moment, to dance like an idiot.
Vickie, thanks for putting up with the junkyard dog. I turned the settings down quite a bit, and it doesn’t look like Dr. Dave is going ape on anybody any more, but he’s also keeping the perveyours of snake oil away.
November 10th, 2006 at 1:04 pm
Snake oil always gets a bum rap.
When the roller coaster ride get close to the end, it begins to slow. The feelings you had when it started aren’t there and they’re replaced by doubt. When the ride stops your left to think about the ride. Did you embarass yourself by screaming too loud? Did my puke hit that dude behind me? Was the ride worth it? Do I want to do it again?
I have no clue what I’m saying. If its meaningful to anyone it wasn’t complete gibberish.
November 10th, 2006 at 1:10 pm
I have been checking your posts regularly and praying even more. Your strength is there … it may wane with exhaustion, but it’s there. I always hate it when people say, “God doesn’t give you more than you can handle.” But it mostly seems to ring true. As human beings we manage to heal and keep plodding forward and you will too. I pray this is the hardest thing you will ever face. That way, the rest is gravy.
My father had a massive brain bleed about this time last year due to a fall. He was in bad shape (the fall wasn’t that bad, just the aftermath of the small hit his head took), but has since done well. It took a few weeks and some rehab. His speech was affected … he could think what he wanted to say, just couldn’t get it out with words … his speech was garbled. But in a few weeks and after lots of frustration on his part, he recovered.
The point is, there is hope. As many have said before, the brain is an amazing thing. As are you and your love and commitment to GAC. I know she will read these posts and cry as we all have following your journaling. She will wish she could take away your fears and sorrows as you wish you could with hers.
Rest and be strong.
November 10th, 2006 at 2:01 pm
Yes. And GAC is an amazing thing. And she has a hell of a brain.
Right now, at 2:01 PM, I’m totally cool. Its beautiful, Jack White’s still thinking about his doorbell, and I love my baby.
Gonna write an update.
November 10th, 2006 at 2:10 pm
Running through life’s scenarios in our mind, playing the future like a video - that’s not insensitive, or wrong, or callous, or cold hearted.
It’s called coping.
It’s just one way we pretend to have control over our sanity in an insane world. My best friend has a rare and life-threatening form of emphysema that can be disfiguring. Once, while she lay in intensive care, she listened to her mother discussing with her doctor how they could make her pretty again for her funeral if she didn’t make it through the night. She still loves her mother. There was nothing to forgive.
When we love each other, we understand.
November 10th, 2006 at 2:30 pm
I’m relieved you can feel this way, I was beginning to think you were above human. She got the bleed when, a couple of days ago? So how long does it take for a bruise to subside, a week to turn yellow and another to go away? Start worrying in a week, and panic in 2, but not today. I”m glad daily routine is going to take you over again. You will need that. BJ is as cared for as she can be, but you aren’t. Whatever happens, the girl is floating on a sea of love. Your family is different now, BJ lives away from home, and you have sole care of yourself and the boys. Think of it that way, even if only for a day at a time. Go do something Jake related, not BJ related, and get distracted and exercised. You are still your separate self, and that is a good thing, it is the way God made you…
November 10th, 2006 at 7:06 pm
You’re right. What I don’t convey, is that I have the best support in the world. Nodbob’s here now. Last night, Bos and Eaves talked me into hanging out with them. The night before that, Mojofilter was there.
On top of that, in the 1s and 0s, you people help me more than I can say. I said before that I leech all this stuff up.
November 12th, 2006 at 5:27 am
Anyone would feel that way. You are going through so much. I never read this site before today but I just wanted to let you know your wife sounds so beautiful :)