Daily struggles

Why is it after consistently walking a minimum of 3-4 days every week for three months, and hitting 5 or more days most weeks, do I still get tired walking my 1.5 miles. I think it has to do with my messed up foot that is not only *still* hurting me, but now that I'm not using my walking stick, I'm having burning sensations in the ankle from walking on it. I don't think I'm compensating in my stride at this point. However, I know if I leave the wrap off that foot for more than about thirty minutes it begins to hurt across the top of the foot where I supposedly did NOT break the bone. I had to stop and rest four times this morning, and at the turn-around point I actually had to do stretching exercises. I am very frustrated.

M's aide asked me if I have lost weight in all of my walking. Sadly, no, I really have not. I didn't do this to lose weight, and with my long experience with my thyroid struggles, I didn't even expect to lose weight. It would have been nice, but my goal was to help my breathing. That is improving. It's probably the only thing that is improving with all of the exercising I am consistently acccomplishing.

I was going to add an afternoon aerobic work-out three weeks ago when my foot got crushed. I'm still no where near back to a level that I could do that. So, I continue to just focus on the walking routine and keeping the habit even when I'm injured. I am debating starting a very low calorie diet that I was cleared by my physician to start back in January. However, for VLCD you absolutely cannot have something requiring healing. You won't take in enough calories to heal anything and thus tthat is off the table until my foot is recovered.

One of my daughters has eczema so badly that she is now covered from head to toe. She has lotion that the doctor prescribed that was holding it at bay but even that is not working now. The palms of her poor hands are completely covered now. Her appointment with the doctor isn't until the end of next week. Her sister has a prescription shampoo that is more effective. I have her using that on her body every other day to get her to next week. I really don't want to have to take her in to Urgent Care because she couldn't hold out for her appointment, but she is miserable and cannot be made to suffer for another week either.

The other daughter has the shampoo because she too has been battling eczema from head to toe since we moved. The lotion prescribed for her body did nothing, but she discovered that the shampoo prescribed for her head works on her body, so long as she continues to use it. She too has the appointment with the doctor next week. I think I'm going to have to take these girls to an allergist or dermatologist.

I've never seen anything like this, and I've certainly never seen my kids struggle with this stuff before now. I have shown signs of allergic responses my entire life. However, my children have never done so. I did a lot of research on allergies and auto-immune disorders before becoming a mother. I've worked hard to attempt to help reduce the risks of any of my children inheriting the health battles I have struggled with my entire life. Until we moved climates this spring, none of my children have never had these issues. Now, the baby has moderate persistent asthma and these two girls are completely covered by stuff that makes them look awful and feel miserable. I don't know what is going on, but we've got to get it under control.

I spent my entire childhood having these reactions and being made fun of. I refuse to let my girls start school in the fall with these issues being visible. There is no way I will let them endure what I endured. I'll homeschool them for the fall if the doctors cannot get this calmed down before they start classes. They don't deserve to be teased and made fun of because of whatever bizarre health issue we're battling in our home. I just don't know what else to do about this.

Exhausted

I have been putting out fire after fired after fire since late last week.

At this point I am simply mentally, emotionally, and physically exhausted. I know this will get better. However, several children went into meltdown mode when M started deteriorating. Then, S feel apart from his own issues. In addition to comforting children, monitoring M, shuttling children to appointments, II and I have been managing a major crisis with S which ended with him needing to go inpatient.

So, in the middle of all of this, II's mother contacted me. I had briefly contacted her a few months ago, with the concern that she had a right to know her grandson was dying. She immediately swore she was coming to meet him and was going to rebuild relationship with her other grandchildren.

Yeah. We weren't convinced. Thankfully, we did not tell the children anything about her intentions. Of course, she never followed through. In our entire marriage, the only time she has ever followed through is when we have assisted her on that effort. She even stiffed the state park for her cabin she stayed in the week we were married and my parents had to foot the bill for her. I didn't honestly expect less from her.

Even so, from this same place of feeling like perhaps she should have knowledge of her grandparents, I contacted her last week to inform her that M has even less time than he had before, and that we weren't certain he was going to make it through the weekend but were fairly sure he won't make it through the fall. I also notified her that she has another grandson.

Today, I got a response from her. It is the typical passive aggressive, poor-me excuses I have heard my entire marriage from that woman. The only things she has ever done with passion when it concerns our family was her vicious attack against me when I suffered a miscarriage on E's first birthday, and her disgusting disowning of II when I caught him.

This redition of the poor me routine includes stories that her teen daughter got ugly on her dying husband while she was on a mother-daughter retreat with her youngest child and whines that her six year old is bipolar and rages constantly so she cannot find a babysitter for him.

Well, let's see. The teen daughter is a hell-cat because she has been raised to be such. This woman recieved that child as a foster-child at six months of age. She spent her entire childhood putting NO boundaries, no healthy parenting, no consequences for poor behaviors and nothing but spoiling her senseless. This is the same parenting she did to II's thirty year old brother whose greated accomplishment in his life currently is that he was NOT charged for being under the influence of his drug addiction when he was fired from his job as a part-time cop. Instead, he spends the rest of his life on military disability. He injured his right hand and was an army mechanic. That would be honorable IF he hadn't injured it breaking the rules and getting on a motorcycle two days after coming back from Iraq. The regulations stated that he had to do a safety course before he was allowed to go back on a motorcycle because of the rates of soldiers who wrecked doing.....exactly what he did. He then committed fraud and said he injured his hand on a dirtbike so he could get the disability.

I don't think I'm going to be compassionate for this teen girl's behaviors. More than once I asked this woman to please actually parent this child, especially at the times she was trying to destroy my house and attack my children. This girl is now fifteen. I'm quite certain she is a holy terror. It's not like she didn't give them plenty of warning this day would come.

As to her dying husband, yes, he is in fact dying. He was dying when she married him seven years ago. In fact, she was hoping he would die faster, since she felt being a widow was more honorabale than thrice divorcee. He has battled cancer for three years now when he was told he would live nine months. So, I hate to sound callous, but yes, he's going to die. She's known that as long as she's known him.

She made no mention of her son who is truly messed up with severe PTSD and attachment disorder. I have to wonder if she disrupted his adoption. Two years ago, he was smearing feces on the school bathroom stalls and getting suspended. He was also making death threats to her. If she didn't use his situation for sympathy, then I honestly have to wonder if she sent him away at this point. He had to be good for some sympathy. That child was truly scary. It wasn't his fault. I begged and begged and begged her to get him proper help for years. She refused, flat out refused. He is truly scary, but he deserved to at least have therapy to have a chance at healing. That doesn't happen in her home. She will happily give meds to sedate a child and liberally. She won't give children genuinely help for their issues.

She did mention the daughter L's age. Thus far, I would guess that girl is being raised the same way the older girl has been raised. She's likely spoiled with no boundaries or consquences right now. I expect when she becomes a teen, she will be just as difficult as every other teen this woman has raised.

As for her supposed Bipolar six year old, I don't believe her. Simply put, she states that no one believes it but her, which means this drug baby is not diagnosed. I begged her years ago to not adopt this child if she wasn't committed to a LIFETIME of therapy and resources for his challenges. He was cute as a baby, so she adopted him. She didn't care he would have issues. Why am I surprised he's having problems at six. Oh wait, I'm not.

What I really want to say to this woman is that if we are going to play the 'how bad is my life' game, I STILL win. Yet, I am not interested in focusing on what sucks on my life. I'm the mother of a large special needs family. I could tally the struggles and issues and most people would drop their jaws at what I live with on a daily basis. II's mother, like my own mother sadly, is far more interested in making her own life sound so much worse to try to justify why it's okay that she behaves worse than I do in all of our interactions.

I'm not going to say it though. I honestly don't care. I defened this woman and insisted that she loved II to the best of her ability to do so, until that email when she disowned him. I stand behind every word I wrote to her 2.5 years ago. I was being decent by notifying her about her grandchildren. What she chooses to do with that information is hers to make. It's not my problem. I don't really expect her to be a decent person and come be an actual grandmother to these kids. I just decided that I would no longer stop her from being their grandmother if she wanted to. The only thing that stops her from building a relationship with her grandchildren now is herself.

I think her record speaks for itself. She hasn't seen five of her grandchildren in nearly six years, long before we were in conflict with her. She has four grand-children she has never even met. One of those four is about to die, and she doesn't have enough decency to meet him before he dies. Undoubtably, she'll use his misfortune to milk more sympathy for her awful life from those she interacts with though. She seems to be good at that. She's just awful at being an actual mother or grandmother.

Another crisis contained

People are so well meaning these days. Really, they are. I know they are. I know they don't know what to say, nor how to react. I'm just never sure what they want me to say when they ask how M is doing. How is M doing? He's dying. The details of any given day, week, or even month don't change his slow and steady march to the end of his journey. How is he supposed to be doing? How are we supposed to be doing?

We got Cipro into M combined with increasing his airway clearance and his rescue inhaler. His oxygen levels are now holding in the low 90s again. Yesterday, in tyical cystic fashion, he puked/coughed up about a third of a cup of nasty mucous. He's been able to move stuff along when he coughs since that point.

I can actually handle the well intentiond inquiries into how M is doing. It's the denial that I cannot handle. Those who insist that M will be healed, that every crisis averted means he somehow lives. Those who question my faith because I am coming to the point of acceptance in knowing my ten year old son will die before he turns eleven.

Really? Pray for us, offer good thoughts to the universe, ask us how we're doing, anything well intentioned and done with a compassionate heart I can tolerate. Just don't tell me he's going to make it. Especially don't demand to know why we're not chomping at the bit to hike hours away to the only medical center that does multi-viseral transplants. Even IF there were good odds that you can get a liver, small bowel AND lung transplant for a pediatric case, if still wouldn't help M qualify based upon his low IQ, his profound autism, and his Bipolar diagnosis. Even IF organ transplants were an option, I can't even get him to voluntarily swollow his digestive enzymes anymore. I don't see him tolerating the months of extremely intensive and invasive procedures it would take to get him into a transplant program, much less survive the afterward life of having replaced a large portion of his organs.

We choose to not seek organ transplant for M. It was the compassionate and loving option to give this child. His poor body has been through more torture and pain than most of us will ever experience in a lifetime. It was one gift of peace we had left to offer him, and one we willingly give to him.

So today, we have averted another medical crisis. I truly thought he might die this time. He came pretty darn close. However, we propped him up to live another day. That doesn't mean it's over and we rejoice. It means we live and wait for the next crisis, having to decide yet again how much is compassionate and how much is too much response. When do we let go, how do we let go. Above all, how do we protect him and his siblings.

This is not over. We are not through the challenge. Living is just as much torture for M as dying is. Being through the crisis means that M goes back to his daily living. It's not much of a life anymore. He will no longer eat or drink thus we must plug him into his g-tube four times a day. He must sit while we wait for the formula to go into his stomach because if we let him put it in the backpack, as we used to, he will take it apart and feed the ground to prevent the calories to enter his body. His body struggles to digest food now. So, after he eats he desperately wants to sleep. However, he fights food constantly. You cannot simly put him in his room to sleep. You have to determine how long after a feeding will it take for the bulk of the formula to leave his stomach. If you put him to bed too soon, he will promtly vomit the entire feed all over his bedroom floor.

He refuses to take his meds 90% of the time now. This means you must force them down his throat in the same manner you force a dog or cat to swallow pills. You push down on his lower jaw to open his mouth, put the meds into the back of the throat quickly, hold his jaw closed and sit there until he cooperates enough to swallow them. Frequently, you have to hold his jaw closed afterward because he will attempt to puke up his meds. Occasionally, he succeeds and you have to fish the truly important pills out of the vomit and start over.

He will no longer eat or drink but he's obssessed with water. His newest trick is that any glass of water you actually give him, he will dump onto the floor. Yet, he spends his day hunting water as if he is dying from parch, guzzling random glasses of unidentifiable liquid that don't belong to him, even drinking from the toilet if someone does not esort him and supervise him in there. It's bizarre and never-ending. His hospice aide is getting extremely frazzled by how this behavior is escalating now. She's never seen anything like this. She takes a glass of fresh water in every morning for him, and every morning she has to fight him out of the toilet instead. I'm just grateful that after years of doing it all alone she hangs in here even as his behaviors continue to escalate.

The first time he deliberately puked on his new teacher's materials, she was stunned. She had never experienced that before. Now, she recognizes the signs he's about to start and grabs her supplies and is done with schooling before he can get it up. School is still a huge motivator for him. About 60% of the time, he will choose to not vomit when he knows it will cost him school. Notice I said 60% of the time. That's good compliance for him now. The rest of the time, he will induce vomiting with vigor.

He has lost his potty training entirely. I finally put him back in pull-ups when he pooped all across the living room in retaliation because I would not let him go swimming with his siblings. They swim in a pond. It's not a safe place for him to swim, even if he were still physically able TO swim, and he's not. I decided the pull-ups would be more merciful for the rest of us. They contain most of the poop so we don't have it dripping all over our house. It doesn't contain it all, but it helps.

M has lost most of his words. He doesn't seem to remember how to speak when struggling with the slighest discontent anymore. He also has no concept of boundaries between him and others. Someone looks at him funny from across the room and he screams bloody murder and claims they are beating him. His autism is becoming more pronounced and not less now. He is forgetting how to navigate and interact with the world around him. He displays less of the anger he carried for so many years. Now, he's just lost and confused most of the time.

Added to this is his medical struggles. He hurts. He cannot tell me where or how, but he hurts. It hurts to breath. It hurts to cough. It hurts to be awake. It hurts to sleep. We give him Tramadol, one of the rare narcotics that does not shut down the gut so we can reduce the risk of a bowel obstruction. It relieves some of his pain, but it also causes symptoms of a physical addiction. I believe this is the primary cause that when M has enough oxygen and energy, he tends to fall back into raging and attacking us. Violence that we used to see every 6-8 weeks we see every other week or so now. We have regular psychiatric medications for him. We have overdosing protocals for emergencies. We have emergency psychiatric medications when those fail us. Then, we have big guns when we're faced with either controlling his raging....or heading to the Psychiatric hospital with him. Dying must hurt a great deal. For M, it is also terribly confusing and frightening. I use his anti-anxiety medications most liberally of all. I have a run of the mill anti-anxiety med he takes three times per day (and extra if necessary). I then have a big gun anti-anxiety med that he takes every night before bed and at least every third day during the day as well. When he starts to crash, it is not uncommon to give him that medication twice during the day.

I completely understand the need for a Palliative Care program. Not only do we need someone who can balance all of the struggles M faces as he journeys to the end, but we need a program where medications that ordinarily would be unheard of can be administered to comfort him and calm him.

M is dying. There is no stopping this process. That isn't even the focus of our choices anymore. Every day, we watch M be tortured by living. We comfort his siblings, coordinate their therapies for living through this. We manage his medical issues, do everything we can to calm him and comfort him. We ask ourselves how to proceed every day in a manner that honors what is left in M to stay alive, and in a manner that does not traumatize him nor his siblings more than necessary. Some days, we contemplate simply giving up. We could do that. No one would blame us. We could sign DNR orders, remove all life saving measures and wait for death. He would be gone within one month, without question. Certainly, Hospice wanted us to take this route when we got here. We could give up.

We strongly feel that some things we could do to give up would cause M pain and suffering. Anything that doesn't protect his lungs and fight for his ability to breath is worse than the torture of daily living is to him. We are very protective of fighting to keep his lungs functioning. We are less aggressive on his liver. Yet, so far, if we insist upon protecting his lungs, his liver holds on to fight another day. Until his liver stops fighting, we keep fighting. We know the final outcome of this journey. We just have to get there with the least torture for M and his siblings.

Today, we averted another crisis. We supported his lungs, moved the concrete-like mucous out and got him breathing again. We brought him back to his torture of daily instead. We live to the next crisis point again. This time, we have prepared and thought out. The next crisis is when we must tell M that he is dying. When that happens, he may give up living. We have to be prepared to let him go if that is the right thing to do. I'm not certain I am ready. I know we made it through this weekend. It apears we'll make it through this week and next week we will throw hard-core antibiotics at his lungs via his veins again. That will support his lungs for awhile, which will hold the crisis situation at bay again for awhile. It will come again. Each time, it becomes harder to respond, harder to keep him comfortable, harder to know what the right choice is, and harder to bring his health back to stable.

So fast

M's liver was crashing end of last week. He started his antibiotics to support them and we restablized him. Then, two days ago, he got a cold. It's just a common cold. I'm completely miserable with this same cold, in fact. However, his poor body cannot fight this.

On the first day, he coughed and slept a lot. Yesterday, he started crashing. By bedtime, his oxygen levels had dropped to 81%. Truthfully, I have never seen his oxygen levels go that low before, never. It was so bad, he was on the cusp of realizing he is dying.

He is still coughing, but he cannot move anything out. He is coughing until he turns red in the face and nearly passes out, but nothing moves. That tells me that the mucous from his cold has fed the bacteria in his lungs and it has now set up like concrete inside his lungs. There's only a couple of ways to get that out. We use breathing treatments to help him move the mucous out. It's long and complicated, and only a Cystic family would recognize most of what I would be describing. Suffice it to say that when healthy M does two sessions a day of both lung clearance and inhaled medications that lasts nearly an hour to help him clear his lungs. When he gets this sick, we have to do parts of that treatment four times per day to try and help him move more out. We started that yesterday evening. The other thing we can do is given antibiotics to break up the growing bacteria again.

We will never get all of the bacteria out of M's lungs. Most of us get any invasive bacteria in our lungs and it's called pnuemonia. Most cystics live with colonies of invasive bacteria in their lungs. Therefore, when they grow more than usual, it's called a lung exacerbation. M grows Psuedamonas in his lungs. It's a horrifying bacteria to be infected with, no matter where it invades. It's one of the two most horrifying for a Cystic to have. Ten-ish years ago, an inhaled antibiotic came onto the market that allowed Cystics who colonize this bacteria to live longer than the four year life expectancy they used to have once it showed up. Many cystics, like M, developed an immunity to this antibiotic. Last summer, a new inhaled antibiotic finally came on the market. Until last month, M was using it every other month to try and control his bacteria.

M is extremely resistent to his inhaled antibiotics, far more than his other breathing treatments. We weren't even successfully getting a 50% compliance rate on the antibiotics anymore. Meanwhile, this antibiotic is in extremely, EXTREMELY short supply. They stopped filling new prescriptions of this by first of this year. Six months after it was released, the Cystics desperate for hope to stay alive flooded the maker far beyond their capability to produce this drug. We became acutely aware of the fact that while M is running out of time faster than we can stop his clock, every dose of that druge he dumped and wasted was another life that could successfully stop their clock and were desperately seeking the meds to do so.

We made the decision to stop M's inhaled antibiotics. The inhaled antibiotics are the ONLY thing that will halt the progression fo his Psuedamonas ultimately. That leaves us only IV antibiotics to control his bacteria, and those have limited effectiveness. He was supposed to start them first of July anyway. He's advanced so far in his CF disease that the only option we have is to give him IV antibiotics every three months to support his lungs.

Except, this cold has hit M like a ton of bricks and he cannot fight it. Last night, he couldn't breath. Turns out, when his oxygen drops below 85%, he doesn't fight and rage. He simply struggles to stay awake at that point. II and I spent most of the night debating how hard do we fight this time. Do we fight to clear his lungs, or merely keep him comfortable? Do we get really aggressive and start his IVs a week early? What is the right answer to this? The only thing I know for sure is that if we make it out of this crisis, it won't be the last time we have to grapple with these decisions.

Today's plan is a compromise, at least for now. By far, the biggest challenge with M is his own fight against everything that would help him stay alive. Keeping oxygen tubing on him is a never-ending nightmare. Even so, today we are keeping him on oxygen. After morning breathing treatments, I was able to pull him back to 2L of oxygen instead of 3L, but still oxygen. We're increasing parts of his breathing treatments to four times per day. We are also starting him on oral antibiotics for the next week. If we decide to start the IVs early, his pulmonologist will start the process as soon as we ask for it. If he's not better by Monday, we may be there.

The hardest part of this dilemma is the fact that his LUNGS are not killing him. He has advanced lung disease from his CF, but it wouldn't be killing him yet. It's his liver killing him right now. Adult Cystics have described the sensation of breathing on advance cystic lungs as akin to scraping the lungs with glass shards, which is far worse when struggling with a lung exacerbation. So, though we struggle against his desire to not fight, we also have to balance that not supporting his lungs is one of the most terrifying and painful things he can endure. Above all else, we're committed to controlling his pain. There is no way to control his pain without supporting his lungs, despite his massive efforts to resist us on the lungs in ways he will tolerate liver treatments.

There is no good answer. Today, we are on a vigil. Right now, I am keeping him with his oxygen levels in the low 90s and we have a plan of action to try to support him through this viral cold infection. It may or may not work. We may or may not choose to get more aggressive. For the moment, he sleeps on his beanbag chair in the living room. II is sleeping on the couch and I've turned the Pappassaon into my spot for this vigil. Maybe we'll know by Monday which way this is going. I'm not certain it's going to go a good direction at this point. The child is losing what little will to live he had. We cannot fight HIM to keep him alive through many more crisis points.

She called me a cheater!

I have spent the last three months in constant battle with the program from which I am hoping to complete my Bachelor's of Nursing. It has been an absolute nightmare. Among the issues they have created is that they misfiled my original nursing school transcripts under my maiden name, despite my declaring that they would find records under my maiden name. They lost a transcript for a class as well, took three weeks and the Registrar's office to set the straight before they "found" that one. So, I finally got it straightened out, got the admission acceptance and the required deposit submitted.

I was then informed that I missed the deadline for the earlier required orientation class. They lock you out of any other classes until you complete the orientation, and they set me in one that would lock me into only being able to do that one class in the semester, one three hour course. Federal financial aid requires you take at least six hours in a semester. I do not have an employer that can nor will pay for my classes. I am self-pay right now. If I can't take at least six hours, I can't attend.

I called the nursing program to see if they would authorize me to take 1-2 classes concurrently with the orientation course, given that my background is *not* the typical background for their incoming students. Most of their students hold either an Associates in Nursing or a Diploma. They don't have their general education requirements and are admitted into the nursing program to complete their Bachelors, getting their general education classes while they also get their nursing classes. I don't fit that profile at all.

I needed a program that was primarily online, though I specifically wanted preceptorships in person. I know there are bridge programs that skip that portion, but I felt that component was important. Outside of clinicals though, I needed my dyadic coursework to be online due to the issues M is having at this point. I needed a program that was non-profit, as I would sooner not pursue my education than use a for-profit program, even if I could find one acceptable in both my current state and the state we moved from and might return to next year. Finally, I needed a program that didn't have a difference in tuition for instate versus out of state students. I don't qualify for in-state yet, and if we move back to where we came from, I wouldn't qualify for in-state at the end of the program either. I didn't want my nursing program to rule out the possibility of going home for us but requiring me to stay present for instate status, or in-person classwork. Lastly, I needed a program willing to work with my Statistics and Chemistry issues. I have never taken Stats. Instead, I have three semesters of social science research methods. It's far more indepth than a basic statistics course, but if you don't look directly at it and simply use checklists, it will disqualify me. Also, while I have the first semester of inorganic Chemistry, I made a C. Yeah....that was the class that I had just come out of AP Chemistry and hated the 300 student lecture hall when the entire grade was the average of the mid-term and final exams. So, I never went to class and managed to pull off a C based solely off the material I had learned in high school. I'm not proud of it, but that's the reality off that grade, from 18 years ago. So, I needed a program that didn't require two semesters of Chemistry before admitting me. It didn't matter if they didn't require it, or if they allow you to do it concurrently with the program, or whatever. I just needed to not need it done *before* I started.

So, I narrowed my search down to two programs and I applied to this one. I got in, and it was supposed to run smoothly from that point onward. Then they messed up my orientation class, which would completely disqualify me for financial aid. All I asked for was permission to take at least one other course so I could get my financial aid. I attempted to reason with the Program Director that with ten hours of online courses under my belt and the extensive experience in my family, I know how to learn in an online formatting. I was then informed that the orientation class was not just about teaching me how to use the online formatting.

Nope, the mandatory orientation course is required to teach me how to use library resources for research, how to write in APA formatting, and how to build writing skills sufficient for a Bachelor's degree program. Therefore, it was impossible to allow me to take anything with my orientation class.

Yippee skippee, it was the Enlish department all over again! I explained to her that my research paper which was accepted and submitted for the SEUSS symposium clearly demonstrates my ability to do academic research. I am fluent in far more than merely APA citation formatting, and proceeded to list off the ones I am well versed in. I assured her that my academic record over the last two years clearly demonstrates that I am not her average student, and listed those accomplishments for her. I then offered to submit a writing sample to assure her that my writing skills are more than sufficient for the task at hand.

All I wanted was a waiver to take at least one other class with the orientation course so I can get financial aid. That's IT. She agreed to reviewing a writing sample. Ever the overachiever, I submitted my 19 page final paper for Social Theory that was on Symbolic Interactionism, the Criminology paper that was presented at SEUSS, and a random final paper from a history class to demonstrate my ability to write across different disciplines. I offered to provide works in other disciplines or creative writing samples if she desired and I offered to provide her with academic references to assure her of my capabilities.

She gave me a waiver to take Statistics with my orientation class. Technically, this program had accepted my research methods in lieu of statistics. However, about half of the master's programs I am interested in specifically require statistics in addition to the Bachelor's in Nursing. I had intended to take statistics regardless simply so that I don't need to seek a waiver when I apply for my master's coursework. Technically, she gave me what I asked for.

If all she had done was that, we would be fine, end of discussion. What was NOT okay was the "advice" she included with her waiver permission.

•With respect to your writing, you do not paraphrase, you are advised that papers can only be 10% direct quotes. There are also errors involving the placement of punctuation in parenthetical citations, and those errors will need to be worked out in orientation.

•I will consult with Dr. M or Dr. V, whoever will be your statistics instructor, if you are meeting writing expectations for the course.

•We expect our students demonstrate integrity; I understand you have family who are ready to assist you but your works needs to clearly be your own.

Okay, point number one is just plain old pissy. Furthermore, when you realize that two of the three papers I submitted to her were in ASA and not APA formatting, you immediately recognize her complain about punctuation in cituations *if* you are versed in the differences between these two styles. ASA to the uninformed eye basically looks like lazy APA. I thought of that when I submitted. However, I wrote those papers for senior sociology classes. ASA was the appropriate formatting for them, and I wasn't going to go reformat them to submit them to her for this writing sample. As for the quotations, different disciplines have different requirements and expectations. It's disingenious to judge two other disciplines by their expectations both as a discipline and as a department. It's easily fixed by merely telling me what your expectations ARE and I will conform to them immediately when I write for YOU.

My admission to the statistics courses is entirely dependent upon the professor agreeing that my writing is sufficient for a sophomore statistics course? Pardon me while I laugh there. I've known a lot of nursing students and a lot of math students. I would be beyond shocked to be informed that my writing skills are sub-par for a sophomore statistics course. However, if it makes her feel better, go right ahead and show the professor my writing style. Never had a mathematics professor complain about my writing before but perhaps that is because mathematics is primarily about manipulating numbers and not words. There was that one calculus proffessor who begged me to consider becoming an engineer instead of continuing to major in sociology. My algebra professor didn't rqeuire writing skills at all, and my research methods course required formuliac writing. There wasn't exactly room for creative writing skills when learing how to use SPSS and very specific research reports. In fact, I'm not certain a statistics professor even wants to wade through a 19 page social theory paper in the first place and will likely simply say okie dokie rather than survive that experience.

However, it is point number three that literally stops me in my tracks.

We expect our students demonstrate integrity; I understand you have family who are ready to assist you but your works needs to clearly be your own.

WTF? Tell me please that the PhD Director of Nursing did NOT just say what it apears she said. Oh, when I responded, offering her both academic references to attest to my academic skills but also the contact information for the three specific professors those three writing samples were submitted to, so that they could confirm I subumitted them, I earned As on them, and those papers were 100% consistent with my normal writing style and academic performance for their classes, yeah after I said that of course she didn't say what it appears she said. Just for posterity's sake, I most definitely saved those emails. Essentially, what she is saying is that my writing samples were far, far too advanced for their typical student in her program. Therefore, her logical conclusion is that I CHEATED, not that I really am far advanced from her normal student and did it all MYSELF.

I don't cheat. If you intend to accuse me of cheating, you'd better have more than your own snotty attitude to back that insult up. Not only did I save the whole conversation in case she accuses me again while I am in her nursing program, if she makes such an unfounded and without basis accusation again, I will file a formal complaint for it. Do NOT accuse me of cheating. Those are fighting words!

This is normal?

It feels strange to have children out on summer break instead of simply moving to half day academics to accomodate for the heat and the desire to play in the sun more over the summer months. I set up a summer rules list for the public schoolers. I reserved the right to put them into homeschooling if they were to show up bored and unble to entertain themselves, or seeking to do nothing but veg in front of screens for the summer. However, the actual homeschoolers this summer are only three. S is in homeschooling for the summertime because the summer school being offered at his school is far above his academic skills. The school specifically requested that I work with him on core academics this summer to continue his progress to try to get up to grade level. The other two homeschoolers are my two middle schoolers who have learning challenges and thus I have choosen to continue to homeschool them.

In the fall, I will still be homeschooling three. However, S will go to public school and L is coming home to homeschool. I have discovered that after all of these years, I still have a fundamental difference in philosophy on how kinder education occurs in this country. I am very unhappy that Kindergarten through third grade is all about learning to read and do mathematics. There is practically no focus on other subjects and just as little attention paid to improving writing skills. I want my children to learn to read because they want to, and not because it is a forced requirement before they can gain access to knowledge. I want their learning to be based upon their own desire to learn, hampered only by their own quest and nudged to protect the basics if it appears they are missing something.

I have made the decision that I will homeschool the final two babies through their elementary years. I find no purpose for word and math drills except to do busy work. If you understand the concepts of math, and you have a love of reading so that you devour books, you have learned far more than speed drills will ever hope to teach you. If you learn science, history, social studies and other matters while learning to read, then you will simply learn to read side by side with your other learning then you will seek learning out for it's own sake and not merely to accomplish a task. This is what I have taught my older children that has allowed them to be so successful when they transitioned into public schooling. This is what I want to teach these last two babies so they too will have a strong foundation to frame their educational edeavors upon. I will homeschool them. It's not for a liftime with them, but it is to lay their foundations. In the fall, L will join C and Ch in the homeschooling. She has specifically requested she get her summer off and aside from reading books, that's what I'll do with her.

In the meantime, I'm really not sure what to do with a bunch of bored children for nearly three months. M's status is so unstable that we cannot do many outside activities. There will be a few activities, maybe a weekend we can camp-out and convince the nanny to keep M for us. I cannot keep them constantly busy and active. I'm really unsure what I am going to do this summer with all of these kids. I may simply put them back into homeschooling simply so they don't drive me insane. We've never done a summer break before, and I'm not convinced any of this is going to go over well.

How we roll

So, the saga of our fosterchild continues. I really thought the last story about S would be that he went back to his home state, moved in with the safe and loving family that was *not* his original adoptive home. They would adopt him, he would be safe and secure, and he could work on recovery.

Until the original adoptive parents began to fear someone was going to call the state on them. They then began to discuss bringing S back into their home NOT to reconcile their family or because they realized they were wrong to treat a child like trash, but to avoid a state investigation. At that point, many someones felt compelled to call the state and report the situation rather than allow this child to be lost into the nightmare from whence he had come out.

At some point in the story, someone let this teen understand that HIS voice is the one that counts. The state declined to open a formal case on this child, provided the original adoptive parents make a permenant placement him that was not in their own home. They were forbidden to return him to their home ever again, or he would formally be removed for fostercare, along with the biological children in the home they dearly wanted to protect because they felt they were *different* than this child.

S got up one day last week and declared that if he got to have a say in his future, then he was demanding he come back to us and be adopted by us. So, the state, the family he was residing with, and a lot of support characters worked to halt a train and let him get off at the stop he choose for himself.

S is home. This time, he will stay permenantly. He asked us to adopt him. He wants to be a part of this family. Ordinarily, I would encourage a teen of his age to consider a permenant guardianship instead of starting an entirely new adoption. However, the first adoption of S was bungled badly and it puts this child at legal risk. The only way to correct those issues is for someone to re-adopt him. It could be the first adoptive family, but they are not ever going to do this. They deliberately bundled the adoption in the first place on him. The only other alternative is for someone else to adopt him before his 18th birthday and permenantly fix the mess they made of his status and legal situation. Thus, adoption we will pursue for his sake and upon his request. We have six months before we can do that process. For now, we have legal custody and legal guardianship. They are both informal at this moment in time. We have the necessary paperwork and instructions to make it formal through the courts. However, we are delaying in that step in the hopes we can convince the first adoptive parents to cooperate in the far more important need for them to formally relinquish him for adoption to us. They have sort of done this, but it is not in a form legally accepted in our state.

Now was NOT the time for another adoption. It was not the time to add a very hungry and hurting teenager into our home. It was most definitely not the time to find funds for a lawyer and homestudy that we don't have in the least right now. However, when a child knocks at your door and begs you to help them, you don't turn that child down. You don't tell a child for whom you *do* have the talents and resources to help, that you cannot be bothered by the inconvenience they bring to your life. Instead, you rejoice at the beauty and blessing of this child and you open your hearts and your home to this child.

S is an exile of the Quiverful, Patriachal cult as much as we are. His damage and pain is much deeper than ours. We were the adults. We protected our children and when we realized the damage being done to us, we got ourselves out. S had no one to protect him. The adults who swore to protect him hurt him instead. So, now we help another exile to heal.

This is how we roll. This is the gift God has given me. Now, the funds to pay for this, yeah, we won't have that until September or October, but we'll trust that it will come. This one final child to the tribe will not be turned away over the lack of funds. The life of a hurting child is worth far, far more than the funds we must safe and scrap to pay for the lawyer and homestudy it will require to permenantly protect him from the past he hsa finally escaped.