Small Talk: The Prayer Closet

[Chicklet]

Oh I was in fundie hell this weekend while at a funeral. It involved an almost 2 hour "sermon" trapping 95% of us who aren't fundie while listening to this guy who professed to not being a pasture (thank you RHOC) but oh he preached. He was right, he's no pasture. Dear dog we veered from Jesus to Napoleon, to how the YMCA, Yale, Princeton, and Harvard were evil places, to a dramatic reading of Revelation. My husband and I got the church giggles after he stated that he met a guy who had
"suffered execution" in another country.

Oh ok then.

[Julia]

how the YMCA, Yale, Princeton, and Harvard were evil places

 

Do you suppose he knows that Yale, Princeton and Harvard were founded as protestant divinity schools?

[MargeGunderson]

That's cool ('re: honey). We were warned to stay away from natural honey because of botulism or something similar. I wonder if processed honey would work? Everything gets complicated by her preemie status. Which reminds me, I should update my user pic. :)

 

Maisie looks like the most adorable Gerber baby ever!

 

ETA: and now I see I'm late to the party on that comparison. She is just so cute that I posted without reading!

 

I don't have any words of wisdom or anything brilliant to add that hasn't already been said, but please know that you have a support group here that is rooting for you and Maisie. Vent, brag, ask for advice, whatever you need - maybe some Starbucks cards for those days when you need a little "me" treat.

Edited October 12, 2015 by MargeGunderson

[Chicklet]

Oh Julia do not bring up the history thing. They make up history as they like.

All I know is that I was tortured, had a full bladder due to a diet coke before the funeral and I couldn't stop giggling which made it all worse. Add in bad christian music and my day was entirely ruined.

 

I should clarify my previous post, he mentioned meeting a guy AFTER he had suffered execution in another country. Yea that still makes me laugh.

Edited October 12, 2015 by Chicklet

[Catlyn]

Oh Wanderwoman. I'm so sorry to hear about your and your absolutely gorgeous baby daughter's problems.  HW sounds like a real white trash prize. Somehow, I envision her looking like Cher's Laverne character.  That's what it's going to be.  As others have said, what does she see in him, if he's able to leave a sick wife and preemie baby? First time, just makes it easier for the next time.

[Satchels of gold]

Just testing to see if my new icon comes up. Hi everyone !

[Muffyn]

I should clarify my previous post, he mentioned meeting a guy AFTER he had suffered execution in another country. Yea that still makes me laugh.

That is what I was going to ask.  It's a miracle!  He was executed and came back from the dead.  Hallelujah!  

[JenCarroll]

Oh I was in fundie hell this weekend while at a funeral. It involved an almost 2 hour "sermon" trapping 95% of us who aren't fundie while listening to this guy who professed to not being a pasture (thank you RHOC) but oh he preached. He was right, he's no pasture. Dear dog we veered from Jesus to Napoleon, to how the YMCA, Yale, Princeton, and Harvard were evil places, to a dramatic reading of Revelation. My husband and I got the church giggles after he stated that he met a guy who had

"suffered execution" in another country.

Oh ok then.

Did they pass around the refreshing powdered beverages?

[Chicklet]

 

Did they pass around the refreshing powdered beverages?

Ohhh he tried. He wanted people feel free to come up to him and explore the ideas presented during his sermon. Ugh. But we all watched and nobody approached him. In fact most people beat it out of there and even skipped the reception due to fear of being cornered by this guy. They did miss the really yummy cream of broccoli soup.

 

These are the same people who, like JimBlob, started the Church of the Holy Living Room (as we titled it). They wouldn't speak to us for 5 years because we weren't the right kind of religion. But after 5 years they got bored and tired of having nobody to eat dinner with and closed the living room church. Ah good times.

Edited October 12, 2015 by Chicklet

[wanderwoman]

I know how ridiculous my life sounds right now.

You know, there WAS a movie just like this on TV a few years ago.  Everything except the mother being sick part.  Someone famous (sorry I can't remember who) played the jackass father.  The child was severely disabled.  Wish I could remember the name of the movie.

That's why I kept everything quiet for several weeks. I can't believe this is my life and saying it you guys makes me see how bad it is. I know the posted above didn't intend it to seem judge, but even I am waiting for Ashton Kutcher to jump out of a planter and tell me I have been punked. The problem with the internet is that you're reading a compressed version of a life narrative. This situation evolved over two years. Reading it here, those time gaps disappear and it seems like it was an instantaneous change.

[Readalot]

I know how ridiculous my life sounds right now.

That's why I kept everything quiet for several weeks. I can't believe this is my life and saying it you guys makes me see how bad it is. I know the posted above didn't intend it to seem judge, but even I am waiting for Ashton Kutcher to jump out of a planter and tell me I have been punked. The problem with the internet is that you're reading a compressed version of a life narrative. This situation evolved over two years. Reading it here, those time gaps disappear and it seems like it was an instantaneous change.

no, I'm sorry you think we think your life is ridiculous. Far from it! It is not a bad life! Your purpose (God I hate using that word now)is to continue to love and guide Miss M daily, we know she is going to make a positive change in this world! - my sister had a very similar situation to you. Disabled first child (she is 20 now but 9 mentally) and after two more kids he decides to bail. And then doesn't work so he doesn't have to pay child support. - another true story - My husbands cousin found out from a long lost friend HER HUSBAND HAD ANOTHER family, he married another chick and they had two kids! And her two oldest (5 and 7 at the time) knew about it! They had 4 kids total and she thought she was happily married. Both have overcome and I know you will too. My sister is the one that joked her life is a Lifetime movie.it got easier for her as time went on. - XOXO - how about a PO box in a neighboring town that we can send gift cards too? We want to help you in any way we can.

[Missy Vixen]

wanderwoman and HFC, I have to add to all of the best thoughts and wishes here for you.

 

It is my every hope that things will get better. Quickly.

 

Thinking of you. <3

[Chicklet]

Wanderwoman nobody thinks you or your life are ridiculous, we all know or know of a woman who has been in the same boat. Lifetime makes those movies because I'm not quite sure. 

[lookeyloo]

Wanderwoman - NOT ridiculous.  An insidious process.  Been there done that as I've said before.  Have you read Norah Ephron's book Heartburn?  At least google.  Happens more than you know.  But when it happens to YOU - you just can't believe it.  I would wake up in a sweat for a couple of years after wondering how it happened.  But time, therapy and my new life were at play and things did get better.

[JenCarroll]

Wanderwoman nobody thinks you or your life are ridiculous, we all know or know of a woman who has been in the same boat. Lifetime makes those movies because I'm not quite sure.

Or we are that woman.

[Happyfatchick]

As of noon today, our county Animal Control had still not moved toward locating the offending dog. I went to the office (because that's who I am, after all...) and said I wanted to speak to someone with an office and a badge. Preferably a manager. Wasn't leaving until I did. These are days I wish I lived somewhere other than the south. I had to wait a respectable length of time to see Boss Hogg, who didn't seem either moved or even particularly stressed about my son losing a finger. Sat in his chair with his arms BEHIND HIS HEAD!!! Punched a few numbers on the computer, couldn't find any report of the case. None. PD didn't even GO there the day it happened and write it up. Just to see what effect it had, I turned on the recorder in my phone and sat it on the desk. Ever so slightly more animated, he pushed a few buttons and talked to several different people, punched some more keys on the computer... FINALLY located the case, and explained to me what would happen from then on. Had the case worker come to his office. (Because HE WHO SHALL NOT BE MOVED eventually decided I was either staying the night, or seeing some action). GAWD!!!!!

He tells me, tossing his pad aside, "but your son is an adult. We'll have to speak to him before we move forward. Have him call me". Hellllllllll to the no!!! And be put on hold while you finish dipping your twinkies in your coffee??? Is NOBODY concerned about this roaming pit bull with the ability to surgically remove fingers???? So while he was lazily explaining that my son would need to call, I had picked up the phone and dialed his number. "Hey. Vincent needs to talk to you". Handed him the phone. Cross that off the list and move on. Satisfied that somebody was paying attention, I went back to my car. By the time I got home, the case assignee had called and the ball is rolling. Good Lord. Where is Atticus when you really need him???

[Ilovemylabs]

I know how ridiculous my life sounds right now.

That's why I kept everything quiet for several weeks. I can't believe this is my life and saying it you guys makes me see how bad it is. I know the posted above didn't intend it to seem judge, but even I am waiting for Ashton Kutcher to jump out of a planter and tell me I have been punked. The problem with the internet is that you're reading a compressed version of a life narrative. This situation evolved over two years. Reading it here, those time gaps disappear and it seems like it was an instantaneous change.

OH, WW, I certainly did NOT mean to offend you.  So very sorry!  I think you are awesomely brave.

[Readalot]

As of noon today, our county Animal Control had still not moved toward locating the offending dog. I went to the office (because that's who I am, after all...) and said I wanted to speak to someone with an office and a badge. Preferably a manager. Wasn't leaving until I did. These are days I wish I lived somewhere other than the south. I had to wait a respectable length of time to see Boss Hogg, who didn't seem either moved or even particularly stressed about my son losing a finger. Sat in his chair with his arms BEHIND HIS HEAD!!! Punched a few numbers on the computer, couldn't find any report of the case. None. PD didn't even GO there the day it happened and write it up. Just to see what effect it had, I turned on the recorder in my phone and sat it on the desk. Ever so slightly more animated, he pushed a few buttons and talked to several different people, punched some more keys on the computer... FINALLY located the case, and explained to me what would happen from then on. Had the case worker come to his office. (Because HE WHO SHALL NOT BE MOVED eventually decided I was either staying the night, or seeing some action). GAWD!!!!!

He tells me, tossing his pad aside, "but your son is an adult. We'll have to speak to him before we move forward. Have him call me". Hellllllllll to the no!!! And be put on hold while you finish dipping your twinkies in your coffee??? Is NOBODY concerned about this roaming pit bull with the ability to surgically remove fingers???? So while he was lazily explaining that my son would need to call, I had picked up the phone and dialed his number. "Hey. Vincent needs to talk to you". Handed him the phone. Cross that off the list and move on. Satisfied that somebody was paying attention, I went back to my car. By the time I got home, the case assignee had called and the ball is rolling. Good Lord. Where is Atticus when you really need him???

HFC. I love you, that is all. (Wait, I hope your son has a quick and complete recovery)

[Love2dance]

As of noon today, our county Animal Control had still not moved toward locating the offending dog. I went to the office (because that's who I am, after all...) Cross that off the list and move on. Satisfied that somebody was paying attention, I went back to my car. By the time I got home, the case assignee had called and the ball is rolling. Good Lord.

HAPPYFATCHICK.....you are seriously my hero!!!

WANDERWOMAN.....We admire and care about you. Nothing about you is ridiculous except your ex. I also think you are strong and brave.

[Jellybeans]

Maisie is so beautiful!!!

[GeeGolly]

I bet most of our lives could be a Lifetime movie.

[CherryMalotte]

This sounds kinda cruel, but even with all the daily heap of bullshit, I'd rather live this life than be taking the dirt nap.  And I've learned that believe it or not somebody always has it worse.  

Edited October 13, 2015 by CherryMalotte

[Joe Jitsu913]

I know how ridiculous my life sounds right now.

That's why I kept everything quiet for several weeks. I can't believe this is my life and saying it you guys makes me see how bad it is. I know the posted above didn't intend it to seem judge, but even I am waiting for Ashton Kutcher to jump out of a planter and tell me I have been punked. The problem with the internet is that you're reading a compressed version of a life narrative. This situation evolved over two years. Reading it here, those time gaps disappear and it seems like it was an instantaneous change.

Your life does not sound ridiculous at all. I've known a few people with similar circumstances.

[JenCarroll]

FROM (I CAN'T RECALL WHICH OTHER) THREAD:

Please do take this to the closet as I would love to discuss this. Working through some stuff myself right now.

Sure. Or we can PM, if you like.

[travel17]

Hi, I have been a long time lurker who honestly has long been over the Duggars. What keeps me coming back is this far flung group of kind, intelligent, thoughtful people who have a lot of common sense. I delurked to tell Wander Woman I hope she does some type of Gofund account. I, so want to be able to do something, anything. Also, wanted to say I have volunteered to drive people back and forth to treatments, so the advice to check with hospital social workers is great. They are able to help in alot of different ways.

Wander, you should know that some random woman in the Deep South is in awe of your strength. You really were so smart to not expose your baby. ET (must be some alien lifeform) is an idiot, a common cold could take both of you. Your little one (who is just adorable and really looks as if she should be should be in ad for babyfood) is so blessed to have you. It blows my mind at the number of wonderful mothers, Wander, Seashell, HFC just to name a few, on a site about literally one of the most ridiculous women ever allowed to bear children. How could any woman let some man who has never been a parent convince her to have more children then her body could safely carry? And after the Good Lord allowed her to live through having all these children, turn around and believe that God wants her baby girls to raise their ridiculous number of siblings. It's a higher form of insanity to allow your babies to be molested and it somehow be their fault. How could anyone allowed to be educated to any self chosen level, want their offspring to be so undereducated that they are unable to feed themselves? I just wanted Wander to know women like her, have to be the reason women are still the gender entrusted to reproduce:)

Edited October 13, 2015 by travel17

[magpye29]

I bet most of our lives could be a Lifetime movie.

 

I'm writing a book about mine.  Seriously.

 

I love you guys.  I admire your strength, humor, intelligence, and perseverance in the face of horrible obstacles.  I miss you guys when there are no new posts.  I check several times a day to see what you're all up to.

 

And to think it took that scuzzball Josh Duggar to lead me to you!

[MarysWetBar]

I feel very fortunate also to be part of this "club". I am honestly in awe at the level of intelligence held by this group of diverse women! And to think the common thread was the bloody Duggars..blows my mind.

Jen something you said in one of the main threads really struck me. I turned fifty this year and am pondering the ending of a fifteen year relationship. Truth be told, it probably should have ended a few years ago, but life got in my way. I think i mentioned i lost my only brother two years back. .well for a few years his illness, moving his stubborn ass in with me,and trying to make his last months calm and loving put the brakes on any plans flittering through my head regarding my own needs.

So I'm not sure if I'm going crazy or just finally have no responsibilities, but I'm really really doing some deep thinking (and writing) into my past and "purposing" to figure out my next "season of life". Big decisions . .relationship, career, possible relocation even! I feel kind of excited actually. .which is a good thing :)

Edited October 13, 2015 by MarysWetBar

[JenCarroll]

***

I just wanted Wander to know women like her, have to be the reason women are still the gender entrusted to reproduce:)

Well, that and -- look at the alternative. ;-)

[wanderwoman]

OH, WW, I certainly did NOT mean to offend you.  So very sorry!  I think you are awesomely brave.

No. No. ..I wasn't offended. You just held up a really big mirror and I was ashamed of being that woman that seems so trod upon. I do need to count my blessings because as bad as this is, it could always be worse. My daughter is alive. I'm alive. Even if we're struggling financially, we have food and shelter. Some people don't even have that. I have a gorgeous little girl who literally makes my day special every day. And, I have friends (online friends, but still friends) to keep me sane. I'm blessed.

I'm not ruling out a gofundme. There are just things I need to think about. I want to make sure the stbx can't use it against me. And, I feel like I need to give you guys more access or something so you feel like your investment is well spent. I know, as a person that donated to McMama, that transparency is important. I want to make sure I've exhausted other options before accepting charity.

[lookeyloo]

No. No. ..I wasn't offended. You just held up a really big mirror and I was ashamed of being that woman that seems so trod upon. I do need to count my blessings because as bad as this is, it could always be worse. My daughter is alive. I'm alive. Even if we're struggling financially, we have food and shelter. Some people don't even have that. I have a gorgeous little girl who literally makes my day special every day. And, I have friends (online friends, but still friends) to keep me sane. I'm blessed.

I'm not ruling out a gofundme. There are just things I need to think about. I want to make sure the stbx can't use it against me. And, I feel like I need to give you guys more access or something so you feel like your investment is well spent. I know, as a person that donated to McMama, that transparency is important. I want to make sure I've exhausted other options before accepting charity.

Helping out a friend would be how I would look at it. Paying it forward. Whatever you are comfortable with. Enjoying looking at sweet Maisie's face.

[JenCarroll]

I'm not ruling out a gofundme. There are just things I need to think about. I want to make sure the stbx can't use it against me. And, I feel like I need to give you guys more access or something so you feel like your investment is well spent. I know, as a person that donated to McMama, that transparency is important. I want to make sure I've exhausted other options before accepting charity.

You don't. You really, really don't. You need to do whatever you're comfortable with. I've made a couple of gifts that I later was disappointed in, and a couple I am very happy about. I have the freedom to make those choices, and if I choose poorly once or twice, then it's live and learn. And I'm lucky enough to be in a position to take those chances at no great risk to my family's finances.

A gift is offered as a gift. No return compensation required. A simple thank-you is always welcome, but nothing more. If ultimately we all remain anonymous, that's just fine. If some of us find our way into a closer on- or off-line connection, well, that's a thing that happens too. No harm no foul, either way.

[Readalot]

You don't. You really, really don't. You need to do whatever you're comfortable with. I've made a couple of gifts that I later was disappointed in, and a couple I am very happy about. I have the freedom to make those choices, and if I choose poorly once or twice, then it's live and learn. And I'm lucky enough to be in a position to take those chances at no great risk to my family's finances.

A gift is offered as a gift. No return compensation required. A simple thank-you is always welcome, but nothing more. If ultimately we all remain anonymous, that's just fine. If some of us find our way into a closer on- or off-line connection, well, that's a thing that happens too. No harm no foul, either way.

. Yes, this! Thank you JenCarroll, my feelings exactly. No strings attached!

[Happyfatchick]

(Wait, I hope your son has a quick and complete recovery)

for some reason - and I know you didn't mean for this to happen, Read - but when I read that sincere hope, my first thought was "wow, that's gonna be really weird if his finger grows back!" And I snorted!!!

I too love this little community, I check it all the time. I QUOTE you all the time. I'm always re-telling stories from here, and then finding myself in that awkward position of trying to explain where the heck I "know" you from. The Duggar blog? (Who wants to admit THAT???).

WW, about 2 (?) weeks ago, you wrote a rather lengthy post that I meant to comment on at the time - it was one of the most profound posts I've ever read. It wasn't something that left a bunch of room for comment; more like there was this collective silence at the end. You are my hero and you make me so much wish I could know you in real life. (But you never EVER want to go on VACAY with me...) Maisie is an absolute doll baby. There's not one fellow poster who thinks your life OR your posts are ridiculous. I'm as proud of your perseverance as if I'd raised you myself. Maryswetbar: GO YOU!!! I am rooting for you. Change is hard in any phase of life, but you're thinking it out with an open mind and you're going to make the right choices, I know it.

Where is JoanArc? She quit her ridiculous job, remember, and I don't recall seeing her posts for a couple weeks. Jelly, how's your roomie holding up, and how are YOU?

[Love2dance]

I feel very fortunate also to be part of this "club". I am honestly in awe at the level of intelligence held by this group of diverse women! And to think the common thread was the bloody Duggars..blows my mind.

So I'm not sure if I'm going crazy or just finally have no responsibilities, but I'm really really doing some deep thinking (and writing) into my past and "purposing" to figure out my next "season of life". Big decisions . .relationship, career, possible relocation even! I feel kind of excited actually. .which is a good thing :)

MARYSWETBAR, sending you support as you make these important, difficult decisions! Hoping that whatever you choose brings you happiness and contentment. Hugs!

[Itsnotreality]

Rant brought on by germs.

Hosted a family dinner a couple weeks ago. The parents of my nephew dropped him off early on his own as they were both working/playing sport and would be late. They dropped him off saying "he's a bit tired". No he was sick. He's four and in daycare so I get he's going to be sniffly for years but this was continuous leaking out of nose, eyes, most likely pink eye, and refusing to play, wanting to sleep my on floor all afternoon instead of play with other kids.

What is wrong with people. Putting aside the sharing of germs (separate rant!) How can other things be more important than your kid who wants his own bed to curl up in?

When the dad arrived the "he's tired" story continued and later "oh, his eye looks a bit sore". Seriously. It's the moment Fuggar became a verb. In writing this the F mistakenly replaced the D because I am still a bit riled but it really is an action word:

Fuggar: the act of putting your own desires before the basic needs of your children.

Say it. Fuggar. It just kind of rolls off the lips with a very self-satisfying curse/accusation all in one. I think my hate-on of Duggars, in-laws, & others boils down to Fuggars.

[Readalot]

Rant brought on by germs.

Hosted a family dinner a couple weeks ago. The parents of my nephew dropped him off early on his own as they were both working/playing sport and would be late. They dropped him off saying "he's a bit tired". No he was sick. He's four and in daycare so I get he's going to be sniffly for years but this was continuous leaking out of nose, eyes, most likely pink eye, and refusing to play, wanting to sleep my on floor all afternoon instead of play with other kids.

What is wrong with people. Putting aside the sharing of germs (separate rant!) How can other things be more important than your kid who wants his own bed to curl up in?

When the dad arrived the "he's tired" story continued and later "oh, his eye looks a bit sore". Seriously. It's the moment Fuggar became a verb. In writing this the F mistakenly replaced the D because I am still a bit riled but it really is an action word:

Fuggar: the act of putting your own desires before the basic needs of your children.

Say it. Fuggar. It just kind of rolls off the lips with a very self-satisfying curse/accusation all in one. I think my hate-on of Duggars, in-laws, & others boils down to Fuggars.

. ARG!!!! Poor baby. - I didn't take both of my little ones out for a few months. One was born during flu season. People thought I was paranoid. I limited vaccines to two at a time, probiotics ahead of time and no exposure to others for a few days afterwards. I don't think some people realize that those shots lower their immune system while its doing its job. I also never use cleaning products around them and only the oldest was allowed around age 12 or so to use them but away from the baby (they are 10 years apart). So far, other than the genetic disorders and related issues ( EDS, POTS, Chiari etc) they have (that's enough illness for anyone) they are pretty healthy. My friend just commented about a month ago about how healthy the 7 year old is and I realized at that point she is right, knock on wood. Never focused on it till that point. Point is, use your common sense I regards to your child's health and F the critics!

[Catlyn]

Oh I was in fundie hell this weekend while at a funeral. It involved an almost 2 hour "sermon" trapping 95% of us who aren't fundie while listening to this guy who professed to not being a pasture (thank you RHOC) but oh he preached. He was right, he's no pasture. Dear dog we veered from Jesus to Napoleon, to how the YMCA, Yale, Princeton, and Harvard were evil places, to a dramatic reading of Revelation. My husband and I got the church giggles after he stated that he met a guy who had

"suffered execution" in another country.

Oh ok then.

I can sympathize with you. Reminds me of my brother-in-laws funeral except it turned to a come-to-Jesus meeting.  My brother-in-law's brother picked out the minister, he was trying to take over the funeral.  The minister was pretty old and I guess he needed to rack up souls for Jesus for as many Brownie points as possible. My sister (definitely a non-fundie) was getting madder and madder as he was giving a sermon and asking people to come to Jesus, saying that Jesus never got angry, unlike us mere humans. (I was tempted to ask how he cleared the temple then. Just politely asked them to leave?) Finally, my sister just got up and left the funeral. Several people later said, if they knew that's why she walked out, they would have left also (it was a mixed crowd of Baptists, Presbyterian, Methodists and Episcopalians) !  One of my brother-in-law's friend's mother kept poking him and asking, "what is wrong with that little man up there?"  A couple of months later (her husband was cremated) they had another funeral, with stories, prayers and music. Definitely the kind her husband would have wanted. Still in a Baptist church, but not a fundie funeral!

Edited October 13, 2015 by Catlyn

[XinaMarie]

I have been following this thread for a little while and wanted to jump in and share my story and give whatever support I can to wanderwoman. I had a 25 week gestation girl in 2009. She stayed in the Level III NICU for 11 months (she had an APGAR of 0 when she was born) and was ventilated, CPAPed, and came home on oxygen. She finally came home on 9 medications and was very medically fragile. One of them was viagra that relieved her pulmonary hypertension. Getting insurance to approve this drug for an infant girl (which she would have died without) was like tilting at windmills. But we finally had a very persistent pharmacy tech that called on my behalf and finally got the approval for me. It took days and days and days of phone calls. They try to wear you down so you will give up.

 

She got a cold the first week she was home that put her back on a ventilator and landed her in the hospital for 3 days. That was her last hospital trip. We got a catheter suction machine and I sucked the snot out of her face on a daily basis so she could breath. Fast forward, she is breathing on her own and is a very active but very developmentally disabled and autistic little girl.

 

She received the monthly Synergis shots during RSV season. It was covered through my husband's insurance at work. Any baby born before 28 weeks and was given oxygen therapy is covered by most major insurance companies. Medicaid also covers it. 

 

I am fortunate to live in Houston which has every specialist under the sun. She was born at a children's hospital and now is being seen by a specialty clinic that has all the -ologists under one roof so that it gives her coordinated care. The left hand knows what the right hand is doing. Most importantly, there is a social worker on staff that is wonderful. Trying to navigate insurance and figure out how to pay for the mounting medical bills and therapies is very difficult to do on your own. I am a researcher and I was finding it difficult to navigate the information. Sometimes the information is buried fifteen layers deep on a non-user friendly government website. A social worker knows about programs and services and you should find one to help you ASAP. Also, you must find a group of plugged in moms. These women will give you information and moral support because they are traveling maybe not the same, but definitely parallel bumpy roads and they have so many answers. Someone knows and you need to tap into that brain trust.

 

My husband and I are still married and it is very hard. My husband still cries when he thinks about the hospital. Sometimes he has to go into the bathroom stall at work and get himself together. I try not to think about it. My breakdowns have more to do with her future. We are tired all the time. My daughter decided not sleep through the night for about 9 months. I feel like I always have to find the answer to everything, implement everything, problem solve everything. It makes me resentful and unappreciated. But we forge on.

 

Finding people who will support you with more than "prayers" or liking your Facebook pictures are very hard to find. My in-laws who live in town are useless. My mother who would be very hands on lives 8 hours away. We are finally starting to build a group of supportive friends that will babysit for us and want to get their kids together with my daughter who frankly, does not offer much as far as social interaction. It took us years to get a date night where we could leave our child at home. It is still hard to find babysitters who can handle her, but it is getting better.

 

Anyway, to conclude this novella, the point is: Get a social worker. Find a support group. Don't be too proud to ask for assistance - public or private. These kids are expensive. You paid into the system and now you need to use some of it. Even if you think that you make too much for Medicaid, there are sliding scale programs and waiver programs in most states that you may be eligible for. You may be "better off" not getting money in your divorce settlement because you will be eligible for more benefits for her.

 

Please PM me if you have any questions at all. I have a blog that I wrote for the first 3 years that I can share with you if you are interested. It focuses on her medical issues, therapies, developmental milestones and fun times. After that, my daughter's autism behaviors were really starting to present and i was too busy and psychologically broken to continue the blog.

 

eta: Also, if you do get full custody of your child and you are looking for a fresh start and are willing to move...you should consider moving to a state with generous special needs benefits. They vary greatly from state to state. I think all the time about what I would do if something happened to my husband. I am not from Texas and don't particularly like being here. I would have more family support going back to the state I grew up in, but unfortunately I know it would not be in the best interest of my daughter because the benefits, programs, and opportunities are limited for her there.

 

One more thing and I'll shut up: once your daughter starts school that will be another whole new system to navigate. One where other people are responsible for your child for large chunks of the day and you lose control. And every single thing you want for your daughter has to be documented or they won't do it. And you have to ask for everything because they won't even tell you what is available to her. And you have to constantly check up on them to make sure they are doing what they say they are going to do. My child is non-verbal so she could never tell me about her day and I had limited time to talk to teachers about how she was doing. My daughter was eligible for a preschool program through the public school system at age 3 that she attended for two years before I got fed up and opted for a private school.

 

Again, I would recommend at that time to take stock of the school system's support for special needs kids and ask as many questions of other parents as you can. I recently read a story about a Downs Syndrome teenager forced to be bussed to a high school an hour away so he can be segregated with all of their other special needs students on one campus (illegal!) So even though it is 2015 you have to watch out for crap like this. So getting to the point, when she gets to pre-school and school age there will be another time to re-evaluate her needs and if you are able, to move into a school district that is the best fit for her.

Edited October 13, 2015 by XinaMarie

[Satchels of gold]

i don't want to sound like a drunken sorority girl but.....I love you guys man!

Seriously there are some serious "kicking butt and taking names" woman on this board. I tip my hat.

[NextIteration]

I feel like I always have to find the answer to everything, implement everything, problem solve everything. It makes me resentful and unappreciated. But we forge on.

 

Find a support group. Don't be too proud to ask for assistance - public or private. These kids are expensive. You paid into the system and now you need to use some of it. Even if you think that you make too much for Medicaid, there are sliding scale programs and waiver programs in most states that you may be eligible for. You may be "better off" not getting money in your divorce settlement because you will be eligible for more benefits for her.

 

So, so, so much valuable advice here.

[MargeGunderson]

You just held up a really big mirror and I was ashamed of being that woman that seems so trod upon.

That's not the impression that I have of you at all. I see someone who, in a very short period of time, has had some of the worst of life's curve balls thrown at her and is still standing. It might be hard to see that when you are in the middle of all of the crazy, but I hope that you can see how resilient and strong you are - which is how we see you. (if I may speak for the board for a minute)

[Tabbygirl521]

That's not the impression that I have of you at all. I see someone who, in a very short period of time, has had some of the worst of life's curve balls thrown at her and is still standing. It might be hard to see that when you are in the middle of all of the crazy, but I hope that you can see how resilient and strong you are - which is how we see you. (if I may speak for the board for a minute)

You speak for me :)

[Wellfleet]

OMG. This wins the internet for the day!

 

I'm so sorry for that poor kid. What numbskull self-absorbed eejits he has for parents. He's lucky to have you in his life. 

 

I don't know your relationship to "the parents of [your] nephew," but somebody needs to give them the verbal equivalent of a slap upside the head over this. This kind of shit is EXACTLY what child endangerment laws are all about. Dragging a sick kid around and refusing to do anything to diagnose or treat the illness. I'd like to think they are teachable, and just need a sharp poke or a shock before they are willing to pay attention. So that things would never get so bad that CPS would be called.

 

Again, that kid is lucky he was in your care for the day. 

 

And - Fuggar is brilliant!!

 

Agree - fuggar is positively dazzling. Should be added to the 19 Questions thread - along with any other new "vocabulary" that's been created a la the Duggars.

[Julia]

I think it's the parents of these people, rather than the people themselves, that one might object to. If anyone. I really don't think that in America in 2015, individuals should lose out on opportunities because of what their names happen to be.

If you saw that segment the OP was influenced by (I did, when it went viral), Raven-Symoné was explicitly saying that she wouldn't hire people whose names coded black to her, so no, I really don't think it's a twenty-first century response either.

The irony, and of course there is one, is that Raven-Symoné's given name is actually Christine.

Edited October 13, 2015 by Julia

[Wellfleet]

You don't. You really, really don't. You need to do whatever you're comfortable with. I've made a couple of gifts that I later was disappointed in, and a couple I am very happy about. I have the freedom to make those choices, and if I choose poorly once or twice, then it's live and learn. And I'm lucky enough to be in a position to take those chances at no great risk to my family's finances.

A gift is offered as a gift. No return compensation required. A simple thank-you is always welcome, but nothing more. If ultimately we all remain anonymous, that's just fine. If some of us find our way into a closer on- or off-line connection, well, that's a thing that happens too. No harm no foul, either way.

 

JenCarroll, I completely agree - except for one thing. I don't think you should say YOU "chose poorly" at times when making a donation that ended up burning you. It's never a poor choice to choose to help someone. If you gave $ help to someone who ultimately scammed you, the blame and the rottenness with that - in its entirety - rests SOLELY with the grifter, not you. Unfortunately the Internet has opened up a whole gigantic new platform for those people who are either too unskilled, too afraid or too lazy to find honest employment for themselves. And made it much easier for them as well.

Edited October 13, 2015 by Wellfleet

[galax-arena]

If you saw that segment the OP was influenced by (I did, when it went viral), Raven-Symoné was explicitly saying that she wouldn't hire people whose names coded black to her, so no, I really don't think it's a twenty-first century response either.

The irony, and of course there is one, is that Raven-Symoné's given name is actually Christine.

I remember there was a lot of ignorance when Amandla Stenberg burst into the showbiz scene, with people going, "LOL her parents are the worst, why couldn't they just name her Amanda like ~normal people?" Turns out that "amandla" is actually a Zulu word meaning "power." 

 

I've most likely lost out on job opportunities thanks to my name, which is distinctly foreign (Asian), looks intimidating to non-Asians, and might peg me as an ESL immigrant. I was actually born and raised in California, but the common thing for second generation Asian-Americans is to have a westernized given name. My family was the only one I knew of where we (the kids) went by our Asian names. I've actually thought about changing the name on my resume to my middle name, which is more western-friendly. I feel resentful about having to pander to ignorant people, but that's the way the cookie crumbles. 

[Liz Tudor]

There's an interesting chapter in the book "Freakanomics" about names (it covers naming trends across all races & socio-economic groups and the impacts they have on the individual). Just adding a link here if you're interested.

http://www.slate.com/articles/business/the_dismal_science/2005/04/a_roshanda_by_any_other_name.html

[wanderwoman]

I have been following this thread for a little while and wanted to jump in and share my story and give whatever support I can to wanderwoman. I had a 25 week gestation girl in 2009. She stayed in the Level III NICU for 11 months (she had an APGAR of 0 when she was born) and was ventilated, CPAPed, and came home on oxygen. She finally came home on 9 medications and was very medically fragile. One of them was viagra that relieved her pulmonary hypertension. Getting insurance to approve this drug for an infant girl (which she would have died without) was like tilting at windmills. But we finally had a very persistent pharmacy tech that called on my behalf and finally got the approval for me. It took days and days and days of phone calls. They try to wear you down so you will give up.

This is true. I often think about the unnecessary run around and worry about someone dealing with that as a teen, non English speaker, or an education. If they give me a run around, what are they doing with that group of people?

 

She got a cold the first week she was home that put her back on a ventilator and landed her in the hospital for 3 days...

She received the monthly Synergis shots during RSV season. It was covered through my husband's insurance at work. Any baby born before 28 weeks and was given oxygen therapy is covered by most major insurance companies. Medicaid also covers it. 

That's what my insurance told me. If she'd been two weeks earlier, she'd get the immunization covered without argument. But, as a 30w and change baby, she's not on their fully covered tier. My insurance required a birth weight confirmation and said anything under 3lbs could qualify. M was a hair over. Then, they said she might be qualified if we had a school aged child in the home. No dice. It's such a ridiculous system.

 

I am fortunate to live in Houston which has every specialist under the sun. She was born at a children's hospital and now is being seen by a specialty clinic that has all the -ologists under one roof so that it gives her coordinated care. The left hand knows what the right hand is doing.

Isn't that the best? I'd settle for the left hand knowing what any hand was doing.

My husband and I are still married and it is very hard. My husband still cries when he thinks about the hospital. Sometimes he has to go into the bathroom stall at work and get himself together. I try not to think about it. My breakdowns have more to do with her future. We are tired all the time. My daughter decided not sleep through the night for about 9 months. I feel like I always have to find the answer to everything, implement everything, problem solve everything. It makes me resentful and unappreciated. But we forge on.

This. This time 1000! I'm so resentful that my life partner completely dumped this on my lap. I am 110% committed to making my baby's life fantastic and I don't regret anything in her being here. She's worth it. But it is exhausting! It is traumatic. I'm waiting to find a therapist covered by my insurance down here because I was doing better when I was in counselling.

 

Finding people who will support you with more than "prayers" or liking your Facebook pictures are very hard to find. My in-laws who live in town are useless. My mother who would be very hands on lives 8 hours away. We are finally starting to build a group of supportive friends that will babysit for us and want to get their kids together with my daughter who frankly, does not offer much as far as social interaction. It took us years to get a date night where we could leave our child at home. It is still hard to find babysitters who can handle her, but it is getting better.

 

Please PM me if you have any questions at all. I have a blog that I wrote for the first 3 years that I can share with you if you are interested. It focuses on her medical issues, therapies, developmental milestones and fun times. After that, my daughter's autism behaviors were really starting to present and i was too busy and psychologically broken to continue the blog.

 

One more thing and I'll shut up

Please don't shut up! That was so informative and heartfelt. I have tears rolling down my cheeks because every time I hear another NICU mom talk, I hear pure devotion. Your daughter was much smaller and more fragile than Maisie but you're still finding the time to share your knowledge. That's remarkable.

Don't feel bad about your blog or Facebook. Posting here is the only thing I've been able to keep up with and even that is spotty. My stbx was a cyber privacy nut who couldn't have public Facebook's because of his job. I got used to his way of thinking that now I see how isolated we were. We spent thousands of hours outdoors, too. With M, there's little free time and I'm not sure I could leave her with a sitter if I wanted to. I'd be so worried it wouldn't be fun.

Thank you for the information!

[Missy Vixen]

Rant brought on by germs.

What is wrong with people. Putting aside the sharing of germs (separate rant!) How can other things be more important than your kid who wants his own bed to curl up in?

Say it. Fuggar. It just kind of rolls off the lips with a very self-satisfying curse/accusation all in one. I think my hate-on of Duggars, in-laws, & others boils down to Fuggars.

I LOVE YOU.

 

This has nothing to do with kids. It has to do with me. I have RA and a dead thyroid. As a result, my immune system is not the best. Both my doctor and the rheumatologist have told me to STAY AWAY from sick people. I have told my friends. I know they all think I am crazy or a hypochondriac, but seriously, I don't come out of my house if I have a sniffle. I have a meeting with two other authors every Friday morning. One of the authors has little kids. She's shown up on two occasions in the past few months with a) a child she suspected had ringworm and b) a child who had pink eye. Let's just say I do not hug her or get near the kids any more.

 

The other author donated walking pneumonia to me about a month ago. I'm no longer contagious, but it's going to take a while to get over this. And I am tired of telling my (adult) friends that I would appreciate their consideration.

 

Edited because it's good to spell things correctly...

And wanderwoman, I realize my little first world problems are nothing in comparison to what you're dealing with on a daily basis...

Edited October 13, 2015 by Missy Vixen

[Happyfatchick]

Missy V, I need to embroider you some shirts that proclaim "STAY BACK: I am a germ magnet!" Good grief!!! The lack of respect drives me up a wall. Pink eye! Hey, thanks!!!

Last night, I took dinner to my son and wife, and ate with them. They were reliving every gory minute of the shock and horror of losing his finger the other night, and she told about riding in the ambulance to the hospital. We're about 30-35 miles south of Atlanta, and the hospital was downtown. As they get into the downtown area....

Ambulance driver to my DIL: do you know how to get to Grady?

DIL: NOOOOOOOOO-WUH!!!!! Are you kidding me? YOU DONT KNOW WHERE YOURE GOING???

Driver: no, we don't come up here much, and I'm usually in the back.

DIL: (frantically showing him her phone) OMG, I have my phone!!! I have GPS!!!

Driver: well, I got GPS, I just thought if you knew...

DIL: but you've NEVER driven up here before???

Driver: nope. (Thumbs to the back). He usually drives, but he got his license for EMT yesterday so I let him go in the back.

DIL: Whaaaaaaa......WAIT!!! You're telling me YOU don't know where we're going, and HE doesn't know what he's doing!!!!

Driver: (insulted) well, he's been "doing" it for a long time, just not solo. But he got his license now, so he's fine.

DIL covers face and concentrates on not screaming. Looks up and sees the huge red EMERGENCY sign and starts pointing and yelling: TURN!!! TURN HERE!!!!

I'm thinking this is why so many comedy routines are based on life in the south. We make up our own sitcoms as we go along.