Dear Universe,

[nodanaonlyzuul]

You have involved my partner in the following:

1. His cat almost died because of crystals in her urine and thankfully I was in town when he was not and was able to take her in to the vet and prevent that from happening.

2. His Mother passed and I already mentioned how it happened. So obviously that completely sucks and is terrible.

3. He suddenly has to get his appendix removed last Wednesday. He is still recovering from the surgery.

4. We find out our very close friends daughter, now his Goddaughter after her baptism in Seattle, may never sit up on her own or walk ever in her life because it is likely that she has spinal muscular atrophy.


Why don't you leave him and his friends alone for a while, eh?

[nodanaonlyzuul]

seriously though I am feeling for my partner. It's a lot to deal with in a short span of time. The last three within two months, and the last two: first the surgery, then the next day the news about his goddaughter.

(n)

[Rock]

My favorite part is when you think the worst is over as in "it can't get much worse than this" and then it keeps snowballing, for ohhh about a year.

Good luck.

[nodanaonlyzuul]

My favorite part is when you think the worst is over as in "it can't get much worse than this" and then it keeps snowballing, for ohhh about a year.

Good luck.

Thanks. Yeah, I really hope it does not continue. :mad:

And even though he shouldn't worry about this because he is alive, I understand it: he is worried about the cost of the medical bills from the surgery and two nights at the hospital. He has PPO but the stuff with his Mom/being the sole executor has cost a lot out of pocket for travel and the like.

Then his family has been on him about helping his sister buy a house and it stresses him out putting his name on things and them pressuring him about it when the money from the will hasn't actually gone through in to anyone's account yet and eh.

Yeah.

Sucks.

[Helvete]

I hope things get better for you and him soon. I don't believe in that karma shit, just sometimes bad shit happens and it's for no reason.

[abcdefz]

That's an awful series of events and pressures. I hope you both deal with it well and don't get bitter.

[b i o n i c]

you've eaten up your bad luck streak. you wont get struck by lighting or hit by a train anytime soon.. things will look up soon. i know deez things (y)

[nodanaonlyzuul]

thanks all. I think he'll be okay as will I. As corny as it sounds, we have each other.

It just stinks when the crappy stuff is happening and I have to vent. :mad:

[kaiser soze]

I feel for you and your boy and his friends and family. This is a tough series of events :(

When shit was rough for me my sister gave me a little bamboo in a coffee mug with a quote:

"treat every obstacle as an opportunity"

I know it's not the best in support, but I hope it's a little bit of encouragement to stay strong

[Guy Incognito]

had similar experiences in short space of time a few years ago that i may have mentioned before including a death, a couple of headfucks, loss of job and personal problems.

Dont want to worry you as everyone is different but took me a long time to come out of depression (for want of a better word), went into counselling which really helped and it taught me that worrying and stressing takes more energy than just dealing with stuff and i know its a cliche but you have to be there for each other and just deal with what comes your way.

When i changed my attitude towards what had happened i found myself enjoying life again and good things started to happen.
hope it all works out

[MC Moot]

yeah,if bad things come in threes you should have 1 credit with fate at this date...

[monkey]

you know, as shitty as things are going, you happen to be handling yourself well. it's a lot of shit to dump on a person, esp. your boyfriend, but he's in a position where he has you to help him, and i think you two are realizing just how strong you are. im proud of you, and i think the universe is too.

i hope everyone and everything gets better soon. you are an awesome person, and you deserve my bestest wishes.

[nodanaonlyzuul]

I've gone through some crappy stuff in the past so I know that with him going through what he is now, it's important for me to be strong so he has someone to lean on. I think that and the fact that he's done the same for me in the past is what keeps my head on straight.

Thanks lady <3

We take care of each other.

[Waus]

Poor guy. :(

Good luck you two.

[nodanaonlyzuul]

:(

so it's confirmed. The baby has Spinal Muscular Atrophy. They don't know what stage but considering her age and when they started noticing a decline in physical activity, it's very likely stage I or II.

Type I, children die by the age of 2.

Type II, they lose the ability to sit up on their own by mid-teens. 75% die by age 25.

This is so fucking shitty.

[HEIRESS]

:(

[hpdrifter]

Oh jesus. I can't imagine having something like that befall a newborn baby. You guys were all so excited and happy when you were up here and now... what?

My god.

[cosmo105]

:( that's rough. hugs to you and everyone involved.

[nodanaonlyzuul]

And it's confirmed, Type 1. Life expectancy of 2-3 years of age, and that's with the assistance of a feeding tube.

jesus christ.

I can't imagine what they are going through right now.

They are over all the time with the baby too. She is like our niece (and Trey's actual Goddaughter). I see her at least once a week if not more, and because Trey works from home he has lunch with the Mom and her several times a week.

:(

[nodanaonlyzuul]

another thing, you would never look at her and think anything is wrong with her. She's a normal, adorable, happy child. Cognitively, she's right where she should be.

I was even thinking to myself that even when we first heard the news, she'd have Type 2. Which meant she'd live to probably 25. Despite being in a wheelchair we all love her and we'd all be with her. I'd help teach her how to draw and figured that would be a really great activity or hobby for her to express herself. I was being positive and knew that her parents, myself and Trey, and everyone else we are close to would love her and be with her anyhow and we'd make the best of it.

I never ever thought that even though there was a chance, that it would be Type 1. My brain didn't even give it consideration.

I don't like that the universe had it's own plan. The universe is a fucking asshole.

[Helvete]

I am sincerely sorry for you, and I know this isn't the place for a theological debate, but where's the fucking God in this world?

[nodanaonlyzuul]

I am sincerely sorry for you, and I know this isn't the place for a theological debate, but where's the fucking God in this world?

I completely agree. I didn't believe in God but this just reinforces a lot of my thoughts on a supposed God.

My cousin, who has no business having children, let alone 5! Has them. They were born and thankfully, they are healthy. But this is a completely, irresponsible, self centered girl who only has these children because she THINKS the man will then stay with her.

ALL 5 children all from different men. Not one has stayed with her because they can't deal with her. Most have been a Father in their lives though. But this is the same girl that says "I can't decide, should I be selfish or think about my unborn child???"

HOW THE FUCK IS THAT EVEN A QUESTION?! YOUR CHILD YOU FUCKING TWIT.

Same with an Aunt, has 8 different children. Also from different men. Has gone as far as asking her SISTER for some of her piss once, because she was pregnant at the time, so she could make her boyfriend think she is pregnant and thus will stay with her.

WTF right?


And yet this couple; a very genuine, happy, loving couple want to raise a child together out of love and she has the fucking disease and she's going to not even grow past 2 or 3 years old.

It's fucking bullshit.

[nodanaonlyzuul]

also, someway everyone will get through this. Somehow.

But for now... it's shit. And I'm still stunned, and devastated, and pissed at the world.

[Waus]

Man. I am so sorry for you guys. That is awful news.

As someone who is considering going to seminary to become a writer/professor, I feel I should at least offer a thought:

I don't think God is okay with stuff like muscular dystrophy. Short of a long theodicy - I think about Jesus bothering to heal people who were sick or had genetic disease. He cried when a friend died. If God thought everything was going according to plan, why heal? Why be sad at all? I don't think God's controlling the world like that, but if I did I'm sure I'd be shaking my fist too.

I hope your bf feels better, and I'm really sorry about that poor kid.

[Freebasser]

Is God willing to prevent evil, but not able?
Then he is not omnipotent.
Is he able, but not willing?
Then he is malevolent.
Is he both able and willing?
Then whence cometh evil?
Is he neither able nor willing?
Then why call him God?

Truer words were never spoken.

I'm sorry you and your fella have had to go through so much in such a short space of time. You still have each other, and things will improve (y)

[ms.peachy]

I am so, so sorry. About everything.

[QueenAdrock]

I'm truly sorry, Crystal. That's really, really awful. Though the girl will have a shortened life, the time she does have on this planet will be truly precious to everyone involved and every day will be cherished. It's a crappy silver lining, I know, but it's something.
:(

[venusvenus123]

I'm very sorry to hear that Crystal. :(

[nodanaonlyzuul]

I think I've calmed down because I worked myself up to the point where I numbed out.

It's important not to just accept the diagnosis. To remember and know that it's a possibility, so we can all appreciate and love her for the time that she is here, but to also hope for something better. I read a story about a child diagnosed with Type 1 SMA, he was only given a life expentency of 1 year his SMA was so extreme. Now, he is now 9 and a half and in elementary school.

That's a really rare case, but it shows that it can happen.

Hope is all that can really be focused on at this point.

Now as long as nothing ELSE bad happens, I won't completely lose my mind. I'm hoping the world doesn't want to test that because if it does I might go completely bonkers.

[skra75]

this message board is good for dealing with tough issues. it is good to post stuff and get an unsolicited response of compassion from random ppl who you don't see irl. thank goodness for this board for that reason, it has helped me alot in some dark times, as I am sure it will help me in the future.

as for your issues related to your bf, i guess my only (albiet sucky) response would be to just trudge on. keep your head up, focus on other stuff that is positive. don't ignore the negative, but be careful bc focusing in on the negative will cause a downward spiral of shitty.

yep don't dwell on it, be supportive, and keep on moving. good luck.

[skra75]

come to think of it, this message board is an interesting thing in that regard too, when ppl are down, many times they go down together. when they are beligerant drunk fun-loving idiots who shit talk each other, it is a communal shit-talking. when we get our science on, we get our science on together.(y)

collective thought is a creepy thing. ah the internets. someday someone will pull out our (my) goofy philosophical logic bullshit out of some long string of HMTL code off of some ancient barely-working server and have to use this as a document or record for the goofy-ass world we live in. will they laugh or will they cry?

Sorry for the sideways pull on this thread.

[nodanaonlyzuul]

thanks skra.

On top of all of this, for myself, things are my job are really, really stressful always. But on top of it 90% of the people treat me really shitty. Talking down to me (even when I'm giving legit information), then Director level staff using me as the scapegoat for their mistakes, etc. Thankfully my boss knows better, but them even trying that feels super crappy. Both of these things happened again yesterday and today.

So just now for lunch I decided that I want a treat. I went to get a mocha and sat outside in the warm sun.

All of a sudden the wind picked up and a mini-wind tornado came out of no where, and I LITERALLY got smacked in the face with a piece of trash. Right. In. The. Face.

I can't decide whether to laugh or cry.

I think I'll do both.

[Echewta]

But you have a pretty awesome boyfriend, a job, seems like good friends, a cool brother, etc. Lots of bright sides to your life that the Universe has given you. Imagine if you or your boyfriend had to go through what you are now solo?
Crappy and horrible things happen all the time and hopefully it reminds us to appreciate what we often take for granted. :)

[nodanaonlyzuul]

Oh I'm not saying I don't appreciate those things (even having a job despite it being such a ridiculously stressful and frankly soul crushing job).

I'm just saying that I'm allowed to hate the universe for this stuff all happening at once.

It's pretty heavy to not only lose someone to suicide, but then have a best friend's baby you care for be given a life expectancy of 3 years MAX if she is on a feeding tube and vent.

I'm allowed to be upset.

[Echewta]

Certainly not saying you aren't allowed to be :)

Well, maybe about the napkin attack to the face. I'm not allowing that one.

[nodanaonlyzuul]

I dunno, man. I work in the Tenderloin in San Francisco... aka crackhead central. It was a ratty, stained, plastic baggie that hit me in the face.

Even without going through all the other shit, if you knew the Tenderloin, you'd be upset, too. :p

[Dorothy Wood]

life can be pretty shitty sometimes. if there's a god, he's a jerk. :(

I hope things turn around soon, and that the baby's health can surpass expectations. *hugs*

[Echewta]

I dunno, man. I work in the Tenderloin in San Francisco... aka crackhead central. It was a ratty, stained, plastic baggie that hit me in the face.

Even without going through all the other shit, if you knew the Tenderloin, you'd be upset, too. :p

That just sounds bizzare. "If you knew the Tenderloin..."

[nodanaonlyzuul]

the Tenderloin is neighborhood, but it's basically a thing at this point. It's own, living, breathing, cracked out organism.

You can't go a block without almost stepping in human waste.

It's awesome!

[nodanaonlyzuul]

just wanted to say: the parents found a support group and because the baby is Type I, they received a lot of free toys that she can handle (light and easy since she isn't strong enough to hold the toys usually meant for babies her age), blankets, meals, support group contacts, and so on.

They also found a hospital that has all the specialists for care of SMA in one building. That means one appointment a month and everyone is on the same page.

Not only that but the main doctor for the baby is a lead in research for her disease. And, because her disease is Type I, there is a special grant for those types of kids which means all of her medical care will be free through this entire process.

A silver lining to this really dark cloud. It's something.

She's still a smiling happy little girl right now too. They are going to start throwing monthly birthday parties for her. August 7th is the first one. :)

[nodanaonlyzuul]

by the way sometimes I find myself being a tad weirded out at my involvement in all of this and how much it affects me. I mean, I'm not even her Mother and I was freaking out and extremely emotional about it. But we just really are that close to her parents, and her. They are our closest friends.

Anyways just wanted to get that out there.

Also, I wanted to ask those that gave me advice before: I want to bring up my boyfriend's Mother to him, mostly just to ask him how he is doing. I would ask him this before of course but it's been a while after the appendicitis thing and then our friends baby. We are together all the time and all of that of course but just because he doesn't bring it up that much doesn't mean he's not thinking about it ever.

I'm wondering if that's a little rude to ask, or if it's nice as it gives him a way to be able to talk about it (as he may not be talking about it because he hasn't been asked recently)?

[ms.peachy]

First - glad to hear the news on the baby. I know it's not great news as in "Oh it's all be a mistake, she's going to be just fine", but at least it's good news in the sense that the parents know she will get the best possible care, and it won't grind them into poverty for the rest of their life.

Second - can you maybe go for a long walk with your boyf, maybe go to a beach or park or someplace kind of tranquil and nature-y, and then just ask him "hey you know, an awful lot of crazy stuff has happened... how are you feeling about, you know, things?" and just see where to the conversation goes?