wanderwoman

I've been thinking a lot about Jana. Here's my problem: the philosophy the Duggars advocate really keeps an adult like Jana in a state if stasis. As an uncourted adult female, Jana is essentially no different than Joyanna or even Johannah. She has surrendered control over her dating life to Jim Bob and has been led to believe that she's breaking God's edict if she dates. Since sex and physical intimacy can only come after marriage, and marriages are entered into for the soul purpose of having children, the whole "It's All about relationships"-ideal is fiction. The Duggars claim that their kids have chosen purity so that they can offer themselves to a spouse untouched and, therefore, the relationship is "more". The reality is that this system says that once you're marred and sexually active, the choices are, once again, no longer yours and your relationship exists for the sole purpose of procreation. You go from a child with no control to an adult with no control. There's no transition or adolescence. Jana and Josie are equal in the eyes of the Duggars. That's sad. I want to believe that Jana is exercising her desire to put off motherhood by not courting. But, I doubt it's that complex. The Duggars say their children have choices, but choosing marriage and children or sustained childhood is like asking if you want mashed potatoes or French fries- it's still a potato.

Old Bay Seasoning is crack. Jelly, I've been selfishly avoiding your posts because every time I read your heartbreaking story, I went to this very dark and scary place. Before I was a parent, I knew children did pass occasionally and I knew it had to be terrible... but I didn't get it. I get it now. I am so sorry for your loss. It doesn't matter when it was. Your love for your daughter is obvious and im sorry I was too caught up in my own pain to reach out. Please forgive me? Im exhausted. But, I've never been happier about being exhausted. Maisie has had some scary moments with O2 levels. We mentioned our altitude numerous times during our NICU time and no one really thought it would make a big difference. Boy. We're we all dumb. Luckily, we have a friend who operates as a flight medic in high altitude rescue and he came over to check out our gear for Maisie. He said it wasn't the concentrations that were wrong- it was the pressure differential between the tanks and our altitude, coupled with the size tubing we were given. I'm beginning to really love our resources. She only had one more rough night after the adjustment and that was because we lost power during a thunderstorm. We had a generator but it had to be primed first. It's always something. She's sleeping great. Eating great. She even went down the Valley for dinner with daddy's boss. Our first therapist was really overwhelmed. I don't think we were a good fit. She we bailed on day three. A family friend got us a grad student from a university who can stay with us for six weeks and she is a wonderful person. She had a deaf parent and has a speech pathology masters in the works. We're doing a lot of tactile stimulation and tongue positioning with different objects to help build her mouth muscles. It's going to be a long road. We're in.

Not only did Sean admit that it was undignifying for Josie, but he also went so far as to say, "she will probably be really embarrassed when she's 16" and (Josie) "will ask why that was put on tv"? Yessiree, the producer just admitted that he has zero fux to give about her feelings, dignity, or future self image. It wasn't bad enough that people got to see and speculate about her twisted intestines, seizures, and painful start, Josie will also know that her most basic right to privacy was ripped away from her and none of the adults in her life stopped it. Sean admitted it was wrong and then brushed her dignity aside.... but, dear Jesus, let's blur out his wife's hospital bracelet. Wtf. Someone please stop the train.

I'm so sorry for your loss, jelly.

First night home was strange. Our girl came home on a O2 saturation monitor and a respiration halter. It's like a vest that does under her pajamas and it tracks her breathing, heart rate, and temperature. Between the two, we had an alarm every twenty minutes. Her O2 was running just below the toleration threshold. We think it's because of our altitude. Her NICU was at least sea level and we live around 8,000 feet. I was huffing and puffing when we took a little walk so I'm waiting for a call back from the RT. It may be as simple as upping her concentration or flow rate. Unfortunately, neither DH or I slept well. I know he had to go pick up our live in therapist and I didnt want him driving tired, so I kicked him to the living room to sleep. A friend came over today to help me get the trailer ready for the therapist. She's a employed by a charter school and they had summer vacation start today so the timing couldn't have been more perfect. She's going to stay with us until mid August. We thought about putting her in our tiny guest room, but I think she will like having her own living space, more. This is going to cost us a mint, especially with one income, and were blowing through savings, but I look at it this way: we can pay to give her the best start and worry about her college later - OR- keep the money in savings in which case college may not be an option because we skimped on early, intensive intervention. It's a scary gamble but I think it's the right thing to do. I put her in her stroller today and, with all of the gear, we looked like a peddler. We walked down the road a ways to see the lake and then I sat with her on a picnic table just soaking up the vitamin D and watching the marmots. She seemed very content and curious l, then fell asleep as we walked home. It's so nice to be out in nature again.

Omg. We are actually home. :) A quick, silly story: we got home to find that some of DH's co-workers had lined up signs on the road into our property. When we pulled up the driveway there were 15 uniformed people with masks and gloves on. Our deep freeze is completely stocked and her little room looks amazing. But, we looked at each other, and without words, moved her BasiNnette out of her beautiful room into our room. Monitor or not, she's stuck with us for a while.

Watching Jill try to wait out the birth was making me tense. There comes a point when YOUR wants or desires for a natural birth have to come second to your baby's need. The midwife is scary and Jill knows just enough to be dangerous. I'm all for natural birth and midwives, but 70 hours of labor with meconium staining and you still want to try turning the baby? There is definitely a major "glitch" with Josie. We left the NICU today with a binder full of things to watch out for and our baby was bigger than Josie. I think Josie has an organic problem that is further hampered by her family's chaotic lifestyle, last-born-baby spoiling, and lack of parental investment.

I've almost got Mark to okay a pic of her in her car seat test. Lol. Protective poppa! The language acquisition aspect fascinates me. It goes without saying that I've been hurriedly reading book after book and papers from experts, parents, and prior premies or deaf children, but I still have hundreds of practical questions. I can, philosophically, imagine how this is all going to work, but it's very new and daunting. DH had a company come out today to make sure our house (a historic cabin built in 1908) can be retrofitted for a deaf child. We know we don't need it for Maisie quite yet (since I don't foresee her being alone for the next four years...or forty years, honestly). Dh just wants it there before we need it. Can you tell we're both control freaks? Looking back on this pregnancy and journey to parenthood, I'm awed by the love we have for Maisie and how our lives were instantly refocused on her. We have argued and disagreed, cried and laughed, been terrified and ecstatic,...it's been a roller coaster. But, I know we communicate better and learned even more about each other than I knew was possible. I know it's not going to get easier. I'm secretly terrified of leaving this hospital and taking our daughter home. I won't have these amazing men and women who have supported us for so long. At the same time, I can't wait to go home and see her room (I didn't get to see it put together and I have been home in months). DH and some work families finished it out recently. I'm glad you have all gone on this journey with me. I think Maisie has 19 Forum Aunties (and Uncles?) And Counting. :)

I am working on a speech therapist but there seems to be a lot of dissection about when they start and if we have one locally. I'm going to guess that we don't, just given our remoteness. The OT/PT we are hiring came highly recommended by the audiologist. Maisie had almost three months of hearing and were told that, with her residual hearing in one ear, will help. There's so much to line up and implement. Oh! We got the all clear to go home Wednesday. If I don't update, it's good news because our lives are about to get crazier. :) We are up on the transition NICU tonight.

That video caught me off guard and I'm sitting here crying.

Hand sex- I had only begun to forget.

So far, this is a train wreck, regurgitation of footage. I really don't want to relive Michelle's bright red lipstick and prairie gown. Interestingly, Jim Bob has gained a lot of weight since 14knc. I also saw Michelle's pubic mound and stomach- I feel defrauded.

:fingers crossed: We are transitioning home in four days! Maisie stats: 7lbs, 9oz - she is a little slow on the gain (her weight is like a yoyo), but she eats well and poops well. Her vision seems unaffected at this point. She smiles and moves all extremities easily. If you recall, one side of her body was weak from a brain bleed early on, but her therapist said she has caught up well. He thinks she will be left dominant. She makes verbal noises (coos and gibberish). Her lungs are still fragile. We will have to be extra vigilant over the next two years. Our insurance has decided that her RSV immunizations aren't covered so we will be paying $1800 per injection. But, they WILL cover her oxygen, medications, and machines needed for home respiratory care (wtf, right?). We plan on keeping her home and isolated for at least three months. Hubby comes into contact with tens of thousands of tourists every summer so we are installing a decontamination station (haha, just a sink and counter with sanitizer and lysol) in the garage. I'm pretty sure we will be solely responsible for keeping the antibacterial wipe people in business. Due to our home location being way, way outside the reach of office based PT and OT services, we are going to take out a loan to hire a live in, private therapist for the summer. It's ridiculously costly, but we'd be spending three hundred a week in gas and lodging to get from home to the nearest Children's Hospital anyway. And, the travel would be hard on Maisie. We're also taking ASL courses through an online company and one of the deaf interpreters who work with DH will pop by once a week to help us learn faster. I have so many questions about how Maisie will know that signs are words. It seems like such a hard way f o r an infant or toddler to communicate. That's the plan for now.

Jana seems, for all purposes, to be a gracious young woman who genuinely loves her siblings and is selfless. Selfless to a dangerous level. Just imho, I think Michelle relies on Jana far more than she should and the fact that Michelle was oblivious to the trauma Jana endured is almost criminal. I know, I know, "but, wanderwoman, we don't see everything". We don't need to. I don't think that homecoming scene was fake or re-shot based on Josie's reaction. Seeing Michelle give Jana a standard, fleeting side hug told me what I needed to know. If that had been my daughter, I would've been in tears, begging forgiveness and showing profound gratitude to the young lady that dealt with a situation far beyond her years and responsibility. Michelle undoubtedly loves her children- but, Jana, Jill, and Jessa have been the moms for a very long time. There are just too many incidents where Michelle is absent to be a fluke. This woman booked a charter flight from Big Sandy to rush home in time for her daughter in law to give birth. She also dropped everything for Michael and Marcus' births. She is in love with all things pregnant. But, she couldn't, with all the pull TLC has and the unseen, but undoubtedly there, cadre of like-minded Christians find a way to get from Chicago to Rogers? A 15 minute seizure is indicative of neurological problems. While a fever might trigger a seizure, it's not the underlying cause.

I didn't throw anything but I did curse loud enough for another NICU parent to giggle and ask, from the door to Maisie's area, if I was watching "that trainwreck". I, too, heard Jana say, "she just took a breath". That along with the medic's remark to the ambulance driver that Josie was "barely breathing...go code 1" me and that they went lights and sirens because Josie was perceived to be in eminent distress. I would never criticize Jana's response. I will point out that her training as a first responder must have been very basic, or her relationship with Josie made it too traumatic, because she didn't follow seizure protocol for first responders. But, Jana was clearly traumatized and afraid. She was acting like a mother watching her child almost die. Unfortunately, Michelle can't see how wrong that is. Preach! Millions of people just witnessed Josie knock on deaths door and saw her in a hospital bed. This poor little girl has no privacy. And, to those who would say that the Duggars are damned if they do and dampened if they don't, I would say this: Without any consideration for the long term impact on their family, Michelle and Jim Bob (two legal adults) decided an honest days work wasn't keeping their family afloat. They sold their privacy over to TLC under the flag of "total transparency about their religion and mission". However, this show has fabricated and recreated the lives of the Duggars so many times that it's no longer reality. It's made the Duggars cult celebrities. Think about this- from James on down, none of the last five (six, if you include the political statement/stunt that was Jubilee's funeral) have lived in a house without cameras or engaged in a normal environment. They have been wired for sound since birth. Their births were televised. Every moment of pain, awkwardness, and action has been filmed and distributed to the point where complete strangers think they know them. They've been denied a proper education and dignity all so that the production company can get the shot or plan an activity. Their education and privacy is second to the production. The Duggars are damned because rather than speak the truth or draw a line that says "health problems are or private", they USE illness, injury, and tragedy to get ratings and THEN clam up. If you don't want to talk about a child's seizures, that's your right. If you film it, deny that child the right to dignity and privacy, as a season cliff hanger, and then never parlay that into a discussion about the outcomes associated with mass breeding and prematurity, then you earn the hypocrite label.

Yes. Jana is amazing and I absolutely can't fault her response. She is that child's mom for all intents and purposes. She acted as I would've expected Michelle would act. There's no excuse for Jana having that amount of responsibility put on her shoulders. None. Grandma and Aunt were there. I'm starting to think a producer is obligated to come for those big moments because of liability potential. Whatever happens to those kids, if there was a camera on the house or there was an agent of the film company on the premises, and they died or were seriously injured? They may he obligated to assure proper care is sought. I also believe Scott Enlow has become family. He's an adult that some of the younger kids have literally grown up in front of.

I'm am absolutely speechless. Everyone here, in the NICU, keeps saying that "there WILL be a day when you don't jump at every monitor alarm or every germ that crosses your baby's path, but you will never forget how precious and precarious life can be". I kept hearing that in my head during the episode and can't even imagine ever referring to a seizure as a "glitch". Michelle said, "I can't imagine or explain what it's like to get a phone call telling you your child is ill". You bitch! That's all I can say and if I get smacked down for it, then so be it. How can you possibly act like the medical emergencies that seem to constantly beleaguer your family are some inconvenience or about YOU? Kid falls into an orchestra pit while you are elsewhere? Child splits her face open while you are elsewhere? Another kid has a severe allergic reaction and you are elsewhere? Your precious miracle child stop breathing an your daughter makes the 911 call? Josie has a 15 minute seizure and you are NOT there and glibly call it a glitch. Michelle has put all responsibility on Jill and Jana for too long and to act like this is what happens with 19 kids is bull. Stop stumping for political candidates and raise those kids like they are the precious blessings you claim they are. Abandoning parental responsibility at weaning is FUBAR.

I would love to show off my baby girl. However, there are a few reasons I'm delaying that. m*My husband is in federal law enforcement through the NPS. He may have 99 positive encounters with the public, but occasionally, he has a one negative encounter and he's wary (with our first child) of giving any nut job a target. He doesn't even use Facebook because he doesn't want pics of us public. * Maisie hasn't met several extended family and friends because of the distance between our home and the hospital. It would feel strange introducing her to the public before our friends. I had her pic as my user pic, but even that made DH uncomfortable. We agreed a long time ago that there were certain hard no's that either of us could institute and he felt it had been up long enough. * Maisie has health issues and is entitled to privacy. I know I share that with you but I worry about her sense of dignity in putting up pictures of her in the NICU. When she's out of the hospital and doing normal baby stuff, I will probably share. I know I wouldn't want pictures of me feeling bad online. * I don't want to be a hypocrite. I think the Duggars put too much of Josie's life on screen. Maisie deserves privacy. I hope that doesn't offend anyone.

Michelle claimed, in one of the books, that she goes out for a special lunch date with her girls around age 11-12 and gives them a box of "special women's things". I would assume it includes a razor and feminine hygiene products. As to tampons/pads, I'm not sure why it matters. Do we really need to know? I don't know if there's a special, Gothard prohibition of tampons. They claim that any sexual activity in marriage is a gift and perfectly acceptable. When Michelle moves into a different "season", she's still Jim Bob's buddy and the only one who can make him a "special" sandwich.As to frequency,...once again, why would that be our business. I'd assume that they're pretty active based on the sandwich analogy. Michelle's assignment won't change. She's been an observer in her own home and she'll continued to observe as her children raise each other. She will continue to shirk her responsibility for children too old to nurse, and indeed has (as proven by Cinder Jana). Michelle will continue the difficult job of sitting by Jim Bob and gazing at him while he speaks platitudes and gibberish, while Super Grandma does laundry, Joy teaches the kids, and everyone else cooks, cleans, and takes life seriously. She will keep pretending that she can have another baby and living vicariously through her pregnant daughters. She has a charmed life and is fundy royalty. Why change?

Derick's post made me very angry. This man spent two years in Nepal. He wasn't too far from where all the devastation and loss of life is occurring. If it were me, I would be almost paralyzed by the fear that people I nurtured a relationship with were hurt, missing, or worse. I hate to make generalizations about missionaries; but, it seems as if most Fundamental Baptist missionaries see themselves as a golden opportunity for the people their aiming to convert instead of a recognizing that those people weren't "missing" anything. They had lives and religions and cultures that have worked for thousands of years. Therefore, when someone like Derick dismisses the pain and struggle of people who allowed him into their lives, it's shocking. I would have a massive amount of respect for Derick if he had, instead, tweeted: "Due to the devastating earthquake in Nepal, Jill and I will be donating the proceeds from this month's People magazine spread to send water, temporary shelter, and medical aid to the wonderful Nepalese people. We've created a gofundme account, please join us in helping our fellow man." Instead, while he and his wife sit in comfort and congratulate themselves for being proper Christians, people in Nepal are probably trying to survive. Telling them that Christ loves them and that they should look to the Lord is like telling a person who is on fire that they should look to the Lord while you're standing there with a fire extinguisher.

The sling doesn't bug me as much as the fact that they're taking a newborn into a Petri dish of germs and Jill really should be taking it easy.

I had no idea how much controversy there was until this week. As part of the "informed consent" process, we will have to meet with a rep from pro and con sides. I made the mistake of saying, "what could a con possibly be?" A preemie supporting group parent has deaf parents and it's apparently a very big controversy because of deaf culture. I told him how I am grateful that Maisie's only long term issue seems to be deafness, but that I still feel conflicted about how she ended up with the disability. He got really judgemental and told me that "deaf culture" shouldn't be viewed as a disability. WTF? As DH said, "here we go... into the fire". Maisie would have to be nine months, adjusted age, to even begin the cochlear process and we want to make sure her other body systems can handle the surgery, so we have homework to do.

The Love Lock idea was inspired by a book published in 2006. Since Bin was probably not reading Adult Romance novels in '06, I'm going to guess he googled "Romantic things to do in Paris". Unfortunately, he stopped there and didn't bother to read anything else. Jesse remarked that he brought the lock from Arkansas and etched it himself, so it wasn't an impulse buy in Paris. Sadly, there are other, equally significant and romantic customs that are truly Parisian and wouldn't have been vandalism. Why TLC encourages or films such tacky displays of American ignorance abroad is beyond me? Another issue I have with the tradition is tossing the keys in the river. One report cited the ecological impact the corrosive metal has had on the Seine and how the keys are occasionally being sucked up into props and ingested by wildlife. Nothing says romance like rusty water and choking animals, I guess. Bin and Jessa, of course, aren't responsible for the origin of the act. But, ignorance isn't a defense. TLC broadcasting this ersatz custom is promoting the destruction of property and ecology. I predict we will, as a result of this episode, see locks start appearing on local landmarks and bridges with a surprising pace.

We had our appointment with the audiologist. Like it was with the birth and prematurity, I feel like we are getting a baptism by fire with hearing loss. I never knew there were so many different types of hearing loss and that there were so many causes. All evidence points to a severe loss in her left ear and a moderate to severe loss in the right. We're told it very likely WAS caused by her transfer seizure and prematurity but, because our only other test was weeks before her transfer, proving liability would be difficult. Her hearing loss is due to sensorineuro issues and, therefore, is permanent. It stems from the nerves in her inner ears and the constriction ,possibly during seizure or from prematurity, of the pathways that lead from the cochlea to the brain's receptors. The positives of the situation, in the moments where I can stop worrying and check my anger, are that: Maisie wasn't born deaf (so hear brain HAS experienced unhampered hearing), Maisie has some residual hearing ("severe" isn't the worst level, ironically), and she's been diagnosed very young. All of those will make her a cochlear candidate at some point. I feel so sad for her, though. What would it be like to never hear certain sounds? Birds? Water running in a creek? Her own voice or our voice? It's also scary. How will she hear a car coming down the street or a fire alarm? I know there are solutions for these things- I'm not completely naive- but, I never had a stake in the outcome. We will do whatever we need to do and Maisie will be a happy, healthy, successful kid because I don't think my husband or I would settle for less for her. Still, I can't help but worry. Other news: Maisie is breathing very well. She's settled into nursing FINALLY! She's still getting a small supplement bottle with a calorie booster, but they removed her ng tube. She's so much happier. We are making progress toward home.

If 99% of honeymooners wanted to hang a lock on the Statue of Liberty, would it be okay? If everyone decided that it was romantic to put locks on the Golden Gate Bridge, would it be considered cool? What about scratching their initials into Mt. Rushmore or the Grand Canyon? The love locks aren't a time honored custom with hundreds of years of history. They're a narcissistic declaration of immaturity and disregard for other people's property, culture, and neighborhoods. If the playground equipment in your neighborhood was vandalized with people attaching locks on the swings, would it be ok? Actually, those locks add significant weight and stress. On just one bridge, in less than five years, five fence panels literally disintegrated from the weight and corrosion. Would it be funny if one of those locks or panels fell into a ferry passing underneath the bridge, killing or wounding a child? What about the people who climb up the lamp posts to find an available space? If they fall, who is responsible? The bridges in Paris where these locks rare attached are NOT interstate bridges. They're foot traffic bridges built in an era where horses and a carriage were the maximum weifht. Your comment, while well intended I'm sure, is part of the problem. People assume that the bridges are modern marvels of engineering when they're really treasured, historic and culturally important landmarks. The French government shouldn't have to pass a law - although it's in the works- to keep people from vandalism. It's common sense. Leave only footprints and take only memories. Ben and Jessa are now married adults, not children. But, hey....maybe we should all show our commitment to the show and our love for the Duggars by attaching locks to the gates of the Duggar compound? Or, maybe just dump our positive pregnancy tests onto their front yard in celebration of our pregnancies? :)