wanderwoman

I want to thank everyone for supporting Maisie and I on our journey. Before allowing this, after a lot of concern, I was worried about the prospect of drama. Because of that, I did not withdrawal funds from this fundraiser and never attached my banking information to it. I'm not interested in losing this group of people I've come to depend on emotionally. If you'd like to remain in contact, PM me. I'm on the way to take M to see her dad today and I will be on the road. I'm sorry to the mods of this forum for any inconvenience. Edited: your donations are being refunded at our request. I am not sad or disappointed so please don't worry. We have been doing this on our own and we will keep doing it on our own.

Maisie and I are off to her physical therapy. I hope everyone has a good day. I also have my own appointment today so if I don't check, don't be scared.

Any of them single?:) I'm kidding.

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

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.

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.

I'm feeling so proud of my baby girl, right now. She is a looker. I have to admit, I took this pic right after her bath so the cannula tape was off (that's why she's so rosy cheeked in that picture). You can also tell that her cochlear ear piece was annoying her because she was trying to take it off her ear. Honestly, though, she's really precious. Those eyes melt me. Shes, in my opinion, outgrowing the preemie head. I've got her in the bouncy seat right now and shes nursing in her sleep- those little lips are so precious. Documenting- check. I don't know what his ultimate plan is. I think it's giving him too much credit to imagine he has a plan. He didn't fight me at all about custody. He is supposed to come to her once a week and I'm supposed to arrange one overnight a month with him, but he hasn't taken me up on those nights. So, do I think he'd sign away custody? Until I found out HW was pregnant, I would've said no. Now, I think he might, only because she is going to be a bigger pain in the ass if he denies her what she wants. I know he picked her...all too well. I spent the last several weeks wondering what I could've done to fix us. It slowly, but sadly, dawned on me that he will probably never get it. And, that, it took both of us screwing up in our own ways to get where we are. I did my best. If she's what he wants, then it was ways doomed. I can't be her. I won't be her! He didn't come back for his time. Not that I thought he would. I should be thankful that she's really too young to notice. good night my friends

I have been dealing with his insanity the last two months and it's all coming to a head, unfortunately. He is tossing his past out the window for a future with this woman. M has an appointment on Tuesday with the developmental therapist so I could see about getting a note while in there. Excellent ideas. I'm much calmer now. I took Maisie outside for a walk and we got a Starbucks. I hadn't been there in months and that coffee was well worth the $3. I already knew that she might be pregnant (rumor mill). My only question is what kind of woman watches a man do what he is doing and thumbnails, "oh, sign me up for that"? Maybe I should start looking at this from the comedic side? How desperate do you need to be to get yourself knocked up with a married man's child when he has a premature baby and sick wife at home? That is Lifetime movie stuff. Maybe Tori Spelling can play HW? This coffee is fantastic. Yay caffeine.

Are you ready for this? Today was supposed to be Maisie's day with her dad. He was supposed to be here at 9am to take her for a few hours. I had asked that, seeing as we are still legally married (albeit separated), he not bring HomeWrecker (hence to force known as HW). At 11:00, he arrived with HW. I told him M was due for her lunch by this point and asked if he had her bottles and special formula in his diaper bag. HW pops up and says, "kids need a few germs now and then"! I tried not responding to her directly and reminded stbx that Miss M is a special case and we are getting into flu season. HW talks over him and says, "Drama! Are you going to keep her in a bubble all her life?" Stunned. I didn't want to start something while I was holding Maisie but I haven't wanted to smack a person as much as I wanted to smack HW in that moment. I mean, wtf? Stud, who was two hours late, then says he is taking M to HW's nephews birthday at a pizza place and they'd stopped to pick up a gift and cake. How could he think that would be ok? I just told him I didn't think he needed M to go do that and offered that he could come by after to spend an hour or so with her and HW flipped! These were her words: "How were you ever married to this manipulative b?:!!? ... she's trying to keep you from M... I will never do that with our child." Stunned again. So, she is pregnant and it's likely his. Omg. When will this end? I don't know what to do. They left. I have Miss M but I'm so upset for her. Who the helm does this chi j thinks she is and how could a father stand by and hear that and then leave? In a not so proud moment, I yelled that he was 9 days late with October's child support and he blaked his inability to pay on the cost of a "worthless trip" to my new place. How can a parent be like that? I'm so angry I could scream right now. I don't know if I can handle this. I'm sorry to vent here but you guys have good advice. Was I wrong? Should I have let her go?

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. :)

Little Miss is doing ridiculous things to a biter biscuit just now. Lol. She's apparently pretty engrossed in it, so I have time to respond before she needs a bath. I don't remember who asked which questions so I'll go rapid fire. I will have to see what the rules for GoFundMe are. I appreciate the suggestion. Last time you guys offered, Wanderman was not having it, but I don't really care what he thinks at the moment. I do worry about how crazy things get when people start accepting online donations. People start sleuthing and I've seen it get nasty. I was one of the McMama readers early on. I would never want to give Maisie such a public footprint online. But I will think about it, I promise. Maisie was on Medicaid for the first six months and then she was automatically enrolled in our states version of Head Start. But, unless I missed something, I don't think her prematurity or hearing loss qualifies her for a monthly stipend or anything. Her deaf services are deeply pro-rated and subsidized by the state. Her other medical needs are our responsibility. I am going to contact the Synagis people and ask about any programs (that is a great idea!). I have been struggling with the attorney issue. For now, we have a mediated agreement that will be reevaluated in three months. We had a pre-nup because hubby had land when we met that was already in a trust for him. So, he isn't on the hook for much. He just took a pay cut, in fact, to decrease his support obligation. Jerk. I figure I should just consider Maise my responsibility and be pleasantly surprised if he does the right thing down the road. His girlfriend's family are the most bizarre family I know. I've only seen them once. That was enough. They fully support their daughter's home wrecking ambitions so I'm sure they give zero f***¡& about me or my child. I heard today that she might be knocked up but that was third person info so time will out the truth. I'm going to look out for playgroup as soon as I can. This will be our first flu season and little miss is still on O2. We are supposed to avoid groups this year. There's a lady nearby who has a child that was born premature about a week after Maisie so that might be a good friend. Ok. She has biscuit in her ear and all over her receiver unit. I think that means bath time. Love to you all.

Just got little miss down. This is the one hour per evening when I hear my own thoughts. In some ways, I look forward to it, in other ways, i dread it. To briefly answer questions: Support systems? Sadly, not family. I don't have any living and DoucheDad(lol) (I'm going to need to edit that when she's old enough to read) is in a similar boat. His new squeeze has a very large, connected family, though. I have always been sort of a loner and our friends are old or current co-workers. But, I honestly needed a new scene and I'm not going to make old friends (some of whom work under him) choose. I am slowly meeting new people in our little apartment community. Someone asked if I ever saw this coming (in pm)? Not at all. I really think the man has lost his mind. He had been supportive and loving until about the time I delivered Maisie's twin. I did notice a slight bobble in his behavior but I thought it was stress. I do think he loves Maisie. He had expressed disappointment at all of her limitations because he imagined hiking through the woods at two weeks old, camping under the stars, and having this little crew of Scouts following him around. We both wanted that and I'm not giving up in her, yet. But, he can't see the possibility and he chose wrong. I just hope he pulls it together before she's old enough to notice he's chosen wrong. What kind of job am I looking for? Right now, any job. I collect a tiny bit of disability but that's going to end soon. Hopefully, my treatment will be finished next month. I need something to bridge the gap. It's about $1000 a month of gray area between income and expenses. Maisie still requires therapy and special meds. Her synagis shot is $1200. She will get three of those between now and April. She is getting big (comparative to her birth size). She has started cooing and making almost purposeful noise. She figured out that she can blow raspberries and she enjoys it so much that she's had to have five bib changes a day. Lol. She's teething, too. She's still wary of loud noises. The people upstairs have a kid who must play violin (badly). She hates that noise. Otherwise, we are just taking this a day at a time. Thanks for your prayers and thoughts.

My treatments are draining but they're supposed to be. I am lucky that I have a good primary care coordinator who is on top of the pain and nausea. My hair didn't fall out completely, but it got really, really brittle and patchy. My biggest challenge is figuring out how to balance Maisie, her appointment schedule, my appointments, and looking for a job.

Update. I'm sorry I haven't been around lately. I don't even know where to start. Maybe, the good news first? Miss M had her cochlear turned on and she has some hearing in the ear that was strongest to begin with. It's kind of hard, at her age, to know what she is hearing, but she is hearing. For the most part, you wouldn't know she was deaf or premature now. She's just small and cute. Finally got her wearing 3-6month size clothes. Lol Bad news: wanderman pulled a wander-affair and is wandering his ass back to his wanderlust... or something like that. Yes. He had had an affair. That's why he went from being super dad to super jerk. On one hand, I know life was hard for us this year. It was stressful and we were apart a lot. But, I didn't feel the need to find comfort elsewhere. That's because I was raising our child! Yuck. Thinking of me being in that NICU with our baby and him being with another woman makes me sick. She is convinced that this is true love. Ha! If he can leave a preemie hanging, I'm not sure he's true love material, lady. The best irony is that she has no desire for kids and since Maisie is pretty labor intensive, he's not really fighting me on custody. Jerk. It angers me that Maisie fought so hard and her dad is less strong than she. As a result, we left the cabin. We're in town and it's hard. I'm job hunting and watching the money go out. We have a temporary order for support but he's not actually being held to a high alimony or child support standard. Not enough for us to get by on without me working. I don't mind working, I just wish Maisie were a bit older. We shall survive.

Yup. All of those faltering, fundy Sea Men. :snort:

I think it's been said, but it might need to be said again. The cameras film them with their full knowledge, consent, and editorial blessing. I'm sure there's a "Nike" equivalent of STFU in place for the family. Kind of like Dena Burns whispering "muskrat" in Meet the Fockers? As someone else said, most families keep secrets and know that topics are taboo outside the family. Jim may be Uncle Jim on camera; but, I doubt he knew more than the carefully constructed shellac of Jim Bob's hair would allow. These people fooled some of the best investigative journalists in the world because no one wants to believe reality show celebrities are really human. We all think there's a vetting process for cameras, but it turns out that the cleaner their image, the worse the secret is.

A year ago, I was eagerly awaiting the birth of my twins. Hubby had been away on a pretty big fire and we had a reunion of sorts when he got home. It was always that way- one of us being gone always had an air of excitement because we couldn't wait to be back together again. It was a feeling I always considered to be good. What I didn't know, one year ago, was that in just 365 days, I would exoerience: the death of a child during the second trimester, a hospitalization to maintain the second twin, a premature birth with months of worry and stress, watching my daughter almost die twice, finding out my child was deaf, finding out I had a cancer related to my pregnancy, and then, that my dear husband, the rock of my life, would decide it was all too much. In some ways, I feel a commiserate spirit with Anna Duggar. She didn't do anything, despite what her faith and family might tell her: and, yet, her husband is now gone and she is left behind. That's a disgusting feeling. As I sit here in reflection, I keep thinking, "what if it weren't just Maisie and me? What if I had four children?" I can't imagine. I'm finding it hard to remember to eat and take care of my own child. Every *thing* in my home is a Pandora's Box of memories. Does Anna have that same sick feeling? The feeling that the men we married weren't who we thought we were and, if that can be true, what else are we wrong about? That scary, dark feeling that we should've noticed and should've done something? Then, I look at my beautiful baby girl - the real hero in our family. She handled it all. Ignorance is bliss and I desperately hope she remembers none of this; but, pain is pain and she is here. She reminds me that I have a job to do and unlike some men (not all), I don't have the option of quitting this child and her future. So, as countless women have done before, I will suck it up and be the mom I promised her I'd be when I was sitting at the side of her isollette. I begged for the chance to raise her and now I have it. This is where the rubber meets the road. Am I ready? I speak to Anna: let's show our girls how women handle this and let's show the boys what women can do. It's not the time to be shrinking violets. It's time to hold our heads up for ourselves and, if we need to, hold our child's hand like a life raft. One moment. One minute. One hour. One day at a time. I can do that. You can do that. To Anna's parents: I don't have family. I'm not as lucky as some. You have a daughter who desperately needs you to lift some if the burden and allow her to feel how she feels. Put your religion and your pride on the back burner and focus on making as many moments as possible easier on your daughter. You had her faith and trust in choosing her partner- now it's time to earn it. Put her and your grandchildren first. Allow them their feelings without shame or judgement. In fact, saying nothing is sometimes better. Listen. Love. Live. To the Duggars: Josh needs to learn what it is like to lose everything so he can appreciate getting it back. Despite what you thought were your best efforts, your son failed. What you did or didn't do is sort of irrelevant now. It's done. Do better next time and pour your love into the four babies who didn't have any choices in this. Tell Anna she's worth your devotion and do not waver from her. Your son is allegedly in safe hands and has some tough choices to make. My husband does, too. But, we can't concern ourselves with their choices because there are children who need more than their fathers can give for now. Love. Listen. Live.

Thank you, all.We went to counselling for six weeks. He never seemed into it. I feel like there are two sides of him locked in a battle for his personality. I gave him so many encouragement and thanks for providing for us when I was pregnant and then during Maisie's NICU stay. He told the counsellor he felt abandoned by my choice to take Maisie back to the hospital we started at, instead of staying at the one that almost killed her. What grown man feels "abandoned" by that? He also said that he's feeling too much pressure from work, M's needs, and my needs to such an extant that he feels he "gets nothing". Well, Jesus! After four hours of therapy, sign classes, volumes of paperwork for M's medical calendar, and cancer, I just don't have the energy to be sexual or pamper him. I am trying to see it from his view but I have an internal monologue that says, "Man up, Man."

Maisie had her cochlear turned on and is doing better. She's gaining weight again and is babbling away. :) My health isn't good but the fat lady hasn't sung. In other news, the man I thought was my rock and my heart has decided all of this is truly o much for him and he wants a separation. I'm not sure how much more I can take. He loves Maisie. I know that much is true. However, after my last chemo round, he came to me with tears and frustration to tell me this wasn't what he signed up for. As if I chose this for our life? He actually said, "I wish we could go back to before...." I'm angry and betrayed. How could I have not seen this coming?

Checking in from hospital. Maisie and I need up but we are hanging in.

Checking in. The situation isn't really improving and I find I have nothing positive to contribute to the boards. In some ways, I feel like the Duggar's life is mirroring our own situation: one tragedy after another. I've been trying to stay positive but it's hard. Massive got her cochlear and it hasn't been the easiest process. We thought about deferring until Fall but every doctor and specialist said not to wait. She did well in surgery but had a post op issue. It was resolved and we will have the devices turned on in about a week but her breathing issues related to prematurity caused problems. Dh is dealing with this in his own way. He and I have this history of a strong team and now I miss my team mate. There's a distance growing and therapy only works if you go. He's prioritizing work so we don't lose insurance and I'm prioritizing other things like our actual health. I'm torn in too many directions. I'm struggling. My cancer is doing what we expected and I'm actually not having a difficult time with the chemo. I'm having a tough time having the energy and patience I need to be a mom and patient. Money is tight and we had to let the therapist go so it's just me and Maisie most days. I know it will pass.

We just had another argument. I don't think I would qualify under ACA since I'm still on Dh plan. We may get to extend or utilize disability funds but I won't know until Monday.

I'm sorry for last night's post. For such a long time, you were my sounding boards. After three nights if arguments with hubby and feeling physically ill, I had to get away from him even if only online . When Maisie was in the NICU, we were shockingly cavalier about how we had saved enough pre-kid to not need help. We even compared ourselves to others like fantastic assholes. Then came her hearing loss and we thought, "we can still do this". But, adding cancer to the plate, along with a low cap on my insurance because I am normally healthy, did us in. Now, although we certainly won't be homeless, there's a friction and simple math problem- our daily expenditures don't match our income. It's a reality that many people face. For us, it's a novel concept. But, the deeper concern is one of time. DH is working his butt off. It's h just s busy season and the company has been dealing with too few employees and a growing demand for service. He's gone a lot and I'm resenting it. He views illness as an issue of will power. When I had my first treatment, I threw up for six hours straight. He had worked a day and because I slept in the bath tub, he had Maisie duty all night. He was tired and he let me know about it. But, wtf? That's what you do as a parent. You suck it up, drink more coffee and deal. Why do I always have to be the strong, positive cheerleader? I asked why he was acting g like he has been and he threw out an excuse about my decision to a quit to be with Maisie like I preplanned cancer! I know it's his fear talking. I'm scared too. I just need a rock right now. Thanks for listening.

We are struggling. Dh and I had a wicked argument. Finances are getting the tight and we gave two distinct views of necessity. Sad.

I don't think I have processed it, yet. When I broke the arm, I k especially something wasn't right because, rather than treat me at out local clinic, they read the xray and airlifted me to a larger hospital. I was mainly concerned about leaving Maisie. DH picked her up from the neighbor and headed down to join me. When I got to the bigger hospital, they kept us waiting for hours and we assumed the break was something that required internal fixation, but was otherwise fixable. They had a surgeon come talk to us and he was the first person to tell us there was a small mass on examination and that it was located almost exactly where the break was. But, we still weren't thinking cancer. They removed what they could, casted me, and sent the sample off for biopsy. I went home and didn't even think about the biopsy because it was such an unimaginable possibility. Then, they called saying it was positive and I had two days of tests and more tests. The full body scan didn't show any other potential sites. The plan, for now, is to do a round of treatment and then monitor for changes. I am told parosteal osteosarcoma with my characteristics can be treated well as long as they're caught quickly and aggressively treated and monitored. My prognosis is good. I'm just tired of hospitals and had a large pity party. Maisie is wonderful. She's growing well and has adjusted to her aides well. The cochlear was rescheduled for July 26 because we wanted to make sure we had enough support lined up. I'm sorry I went dark. I just couldn't be that person who everyone pitied or have multiple, endless discussions about my disease. I'm going to think positive and find a silver lining if it kills me. :)