Previous Entry Share Next Entry
hi
L'ecrivez
only_more_love
I haven't been online much this month. Life's kept on happening, and I haven't stopped watching TV (though I am behind on several shows), but I haven't wanted to write or post much. And fandom hasn't felt remotely interesting; that's not a judgment of fandom, though. I guess I've taken an unintentional hiatus.

In 2009 or 2010, I mentioned that a friend of my husband's from college had a brain tumor. He fought, but a few weeks ago he lost. His last weeks were spent in a coma or locked-in syndrome. They're not sure which. He left behind 2 young daughters, a wife, a brother, parents, and many friends.

This past summer, an old friend of mine who lives another state had her first child. He was in the NICU for a while with feeding problems. What I didn't know until recently is that he was unexpectedly born with a genetic disorder called Zellweger Syndrome  . There's no cure; most kids who have it die within 6 months or a year. He has a feeding tube, a tracheostomy tube, he has seizures, and he's had two bouts of pneumonia. His doctors keep trying to convince my friend and her husband to put him in a chronic care facility so they can "get on with their lives." Instead, my friend has quit her job and is at home with her son. They take it moment by moment, but chances are he will die very young.

M. turned two on March 3rd. My baby is no longer a baby. I cannot begin to fathom how much pain my friend and her family are experiencing as they fall in love with their little boy and know that he is very, very ill. There is nothing I can do, but it weighs on me. I don't believe in God, and I don't see the purpose of these kinds of events/circumstances. I do believe that some face with them a lot of grace, but I don't see them as part of a grand plan.

We've been doing playdates, little classes, etc. Staying busy isn't a problem with a toddler. M. will start preschool part-time in the fall. I'm not sure I'm ready for it, but I hope it will be good for her.

I'm on Season 2 of Fringe and enjoying the hell out of that show. I'm behind on The Good Wife and The Chicago Code, but both are stellar. Friday Night Lights is over, and I am fulfilled but sad, too. It's a shame they didn't get 22-ep seasons. I'm caught up on Bones, but the B/B stuff hasn't felt important to me. Maybe that'll change; maybe it won't. The stuff with Angela, Jack, and their unborn baby has hit close to home, though. More on TV later, if I feel like it.

Life stops for no one but the dead, I know, so I'm sure I've missed a lot in your lives this month. If you'd like, give me an update.
Tags:

  • 1
I just posted some Bones meta.

I feel for your friends. There is nothing harder than a child who is that ill. I understand completely their decision to care for their baby at home. I also refused to put my child into a facility. It's small comfort that at least you did what ever you could.

I can't believe that M. is already 2! This is such an amazing time. Their personalities really come to the fore.

Hi, R. Will take a look at your Bones meta; thanks for the heads-up.

I remember your Benjamin and your yearly posts about him. ♥ Yes, I think they just want to do whatever they can for him, for however long they have him, even though caring for him at their home is more "inconvenient" in some ways than putting him in a facility. I am hoping for a miracle for them, but I fear they won't be the exception. :(

M. is quite a little person now -- quirky, funny, quite assertive in some ways and almost shy in others. You are quite right about two-year-olds and their personalities!

How are you feeling physically?

I wound up with a stomach virus about a week ago which caused a set back for me, but I'm fighting back. So, things are kind of slow going.

We find out about scholarship money from Zachary's number 1 college choice in a week, so think good thoughts!

*hugs you back* Thank you.

*hugs*

I'm so sorry about your friends sweetie, and all the hard real life stuff you've been dealing with lately. I can't believe M. is such a big girl now, I remember very well when you first told us you were expecting. Wow, time flies.

Love ya, hon.

*hugs you back* Thank you very much, Doc. We all have hard, life and death stories like the ones I mentioned in my post; it's just a matter of time, I suppose. But these things are just so awful to experience, you know? :(

M. IS such a big girl. I'll have to send you some recent pics soon. She is a bundle of personality and contradictions and just a whole lot of fun. *g*

Thanks for listening. How are you doing, btw? And how is your father?

I think at our age we just have to accept that life is hard and do our best to meet it head on with grace and friendship.

Definitely send some pics of M. I can only imagine what she's getting into these days :)

My dad is doing pretty good, he's actually travelled a good bit this last year and leaves next week for Israel on a 10-day trip. He gets sad and bored a lot at home - so it's good for him to get away and have a full schedule.

I'm doing okay, not always great but okay. I've had a lot of emotional ups and downs these last 2 years or so, and it's hard to find even keel. I'm working on it though and that's the main thing.

*hugs you back hard*

Take care of yourself, hon.

You sound a bit depressed, bb. It makes me want to give you a hug in person. I'll have to settle for the virtual kind, though. *hugs* I think it's natural for your feelings regarding TV, etc, to change for a while when intense stuff like that is happening. (and I mean that in the sense that it could either become more important--as something to hold onto--or less important)

*smishes you* Thank you for caring enough to read, give me a hug, and drop me a note. It does mean something. I don't think I'm depressed per se, just too cognizant of how painful life can be sometimes. It's all mixed in with good things, of course, but pain is pain. I wish I could make things better...

I think you're right about TV; it's a natural response either way.

How are you doing? Are you feeling any lighter or better these days?

It's touch & go 'round here. I start a new job on the 11th, which objectively is good, but I felt incredibly stressed about it all day. I'm just trying to take things bit by bit.

I have what may seem to be a weird comment, especially considering I am RC. But the thing is, I don't think there is any "Purpose" or "great plan" to any tragedies like this or any other. I believe God created everything and set it all in motion, then gave us Free Will to use as we see fit. Your friends are to be commended that they wish to care for their own child whom they love very much and not just "dump" him in a chronic care facility where he will be tended but not loved like they would. The evil in this world is created by man, not God or Satan, but by us. Natural disasters are just that, natural disasters, not the Hand of God smiting us for whatever real or imaginary offence. Neither are they "tests" to see if we are good or how much suffering we can take. They just are. When the end of the world finally comes, whether natural disaster or manmade then I believe God will sit down and probably laugh at us and weep over us equally.

I told you it was weird. I think of you and keep you in my prayers. Whether they do any good or not, they make me feel like I am doing something. And who knows? Might even work.

D

I don't think any part of your comment was weird. :) There are so many different ideas about God and his/her/its relation to the world. And I am grateful that you keep me in your prayers; it can't hurt, and I am touched that you do it. Thank you. My being agnostic doesn't change that.

My oldest daughter is a devout agnostic (calls herself a Heretic or Atheist depending on which way the wind is blowing from Aquinas and Luther), my oldest son believes in the Faith but not the Church and youngest son still goes to church with me but heaven knows how much longer as secular needs always seem more important (work,school etc.)

It is incumbent upon us to fulfill at least the second part of the Law (which shows up in pretty much every religion in one form or another) Love thy neighbor as thyself. So, in that spirit, let us love one another and not fight over little differences that do not harm to any. (Some days I feel very Wiccan, "an it harm none, let my will be done."

D

I'm so sorry about your husband's school friend and will think about his children and family.

I'm so, so sorry about your friend's son. What a hideous and terrible thing. These deadly genetic disorders that cause nothing but pain are heartbreaking.

I'm so glad you posted. *hugs*

*hugs you back* Thank you for thinking of the people I mentioned. We ALL have friends, family, or friends of friends who have experienced terrible tragedies; it doesn't lessen how terrible and sad they are.

These deadly genetic disorders that cause nothing but pain are heartbreaking.

Yes. :( I am hoping for a miracle, but I don't that I expect one. Would that I could do something meaningful...

How are you doing? How is your mom?

(Deleted comment)
Thank you, PJ. I appreciate the good wishes.

How wonderful that your baby is coming home soon! :) I hope you all enjoy his homecoming to the fullest. *hugs*

Heeeey. Nice to see you around again. I've barely updated LJ myself lately, though I have been around.

Yikes, that's a lot of illnesses for different people you know. I'm really sorry, particularly about your husband's friend. =(

I'm not hugely enjoying Bones atm either. I don't know, it feels like we've gone back a step. We were getting more B/B back in season three and four. :P

I'm definitely going to start watching Fringe though, everyone is recommending it!

Hi, Rosie. How have you been?

Thank you for listening; there's been a lot of bad news around here lately, and while it's not exceptional (we all have similar stories to recount, I'm sure), it's nonetheless difficult to remain unaffected. :(

Oh, Bones. I'm sure I'll watch until the end, whether it's bitter or not, but how I feel about it definitely ebbs and flows. *g*

I am really enjoying Fringe. It's quirky and funny and all sorts of amazing. Haven't been bored yet, though it does sometimes gross me out a little. I need to catch up on Castle, though; I am way behind, there.

just love, lovey.

OK?

I don't "get" it either so just love and hugs.

we are keeping on, keeping on. I hate to go on about it, so I don't and won't, but we're all at least ok here, not what or where i'dve liked to've been at but it fucking beats the alternatives.

a handful of shows are my happy hours which is why I have been MIA besides RL & time issues... I just wanna love what I love w/o drama.

M will LOVE preschool. My A did.

Life is a really fucking long time and sometimes you feel the utter length of it.

We're still breathing though and I have to, absolutely have to beliieve it always gets better again. and this is coming from your new friend who is agnostic at best.

Your friends and their baby?? There is nothing that could ever make me leave Alisha with anyone who isn't me. Hugs good wishes and hope and love to them.

Hang in there, love. The craziest thing about life is the way it always turns better when you're least expecting it.

Edited at 2011-03-31 04:14 pm (UTC)

I'm agnostic at best, too, so I hear you.

Life is a really fucking long time and sometimes you feel the utter length of it.

Oh, this, exactly. You are very wise, Mel. *hugs you, A, and your grammy* How is your girl's health these days?

I think M will love preschool, too. I'm excited for her but also a little wistful; our babies grow up too fast, you know? :)

BTW, you changed your name. I can take a guess re: who David is, but who was Jack?

Thanks for listening, commenting, and being you. *mwah*

I miss you like peanut butter.

<3


I am very late to this, because my life has been pretty crazy over the past school year between work, college, and family. I am so sorry about your friend and your other friends' child, though. There really isn't anything that could be said to make that better. Illness and loss are never fair. *hugs*

M is going to preschool next year? Has it really been that long? Wow! Pre-school was rough for me at first, especially when my second went. It meant that I was home all alone and I totally didn't know what to do with myself. It was an adjustment, but both of the kids loved pre-school. They had a great teacher too, who was really awesome. It was really good for them. M will do great and make all kinds of new friends!

My life is a lot better now that I'm on summer break. This past year was bad. Now, life is good, though! I'll probably post an update at some point soon-ish. Lots has happened with my kids and work and school.

In the meantime, *BIG HUGS* I've missed you!

Edited at 2011-06-03 06:46 pm (UTC)

  • 1
?

Log in

No account? Create an account