Tuesday, December 25, 2012

Kali

Christmas is chaotic and amazing in our home. There are eight children here and one of them may be a teenager but he has never had a real Christmas in his life. He went from West Africa to a cult that shunned Christmas almost entirely. So, it was an honor to see him experience his very first real Christmas this year. It also added to the chaos.

In this time of our grief, I really did not expect much out of II. I had been careful and oh so grateful that for the first time in years I had my own income to buy gifts for him. These last three Christmases, I have taken joy not only in buying Christmas for this man but actually WANTING to do so. I no longer take it for granted after 2009 when I only bought what was necessary for the children to not understand that I prayed for his death every night when I went to bed.

II has been hit hard by grief for Micah, and since I have been working a tremenous burden of accomplishing Christmas also fell to him this year. I did not expect much for me.

Instead, this man I almost turned away from, this humble soul who put himself back together and won my respect and my love all over again, this man inducted me into his own personal Bad Ass Chick club this Christmas.

He gave me Kali, the Hindu Goddess of rebirth, among many other things. The more I read of this Goddess, the more honored I am that he would compare me to her. Funny how four years ago I would have taken deep offense at any non-Christian symbolism when comparing me and today I am speechless that my husband has honored me with both the necklace and the comparision.

Today we focus mostly on the joy and hold the tears for when the children are not surrounded by their Christmas. We do not forget where we have been, nor who is missing today. We have simply choosen to keep this holiday focused on these children. In the midst of that, II honored where *we* have been and his admiration for where I am going.

Friday, December 21, 2012

Precious moments

To work in nursing, you are required to undergo an orientation period. Every nurse is required, whether they are trnasferring within one location, or starting at new location, whether they are a new graduate or a long-seasoned nurse. We must orient to where we are working AND we most demonstrate competency in our nursing skills.

Where I am working, I did two weeks of formal, classroom orientation to employment at this hospital. For those two weeks, I worked full-time, and frankly I nearly rethought my decision to go back to work. Since then, I have been orienting in a preceptorship situation. I follow another nurse and work side by side with her. She signed off on my nursing skills (and actually she signed off on those within two weeks of my getting to the unit) but continues to monitor me and mentor me.

I don't know if I like this part of the training per se. Once I acclimated to the unit and their procedures and protocals, I much prefer simply being allowed to work and ask questions myself. However, my opinion was not asked nor sought out and I have no choice.

The ONE thing I was able to do was negotiate my work hours in this time period. Normally, this part of training is still done full-time. However, I had a personal connection the manager of this department and I had called her personally to inquire about the job before I applied for it. I had asked her then if it would be possible for me to work no more than three days per week after the initial company-wide orientation of two weeks. She hired me with that agreement in place. Not all of my co-workers were happy about this. In fact, one of them was quite bitter. I suspect the fact that she was just hired in August and required to do two full months of full-time hours before being permitted to drop down to the part-time position has much to do with her hostility. I didn't negotiate my orientation to upset, nor to humor anyone else. I did so because while I made this choice to work and keep my children's lives stable, I couldn't do two months of full-time work, or I would fail to keep their lives stable on that front instead.

I started my job first of November and I have two weeks left of my preceptorship before I formally, officially, come off orientation. Thye are intending to continue me for three more weeks of 3-8 hour shifts and as a third nurse in the unit instead of merely one of two. However, I will NOT be orienting and thus will not require permission to breath.

This orientation has kicked me in the rear-end. First, I have been reminded of why I left nursing, why the rumor is that nurses eat their own. I have had to adjust to being out of communication with my family at work, difficult to reach even in the case of an emergency. I have adjusted to the work hours, to the idea that II must to the bulk of the on-call and afterschool parenting on the days I work, which is three days per week still at the moment.

This week and next week, the scheduler gave me a precious gift. She scheduled me to work Monday, Tuesday, Wednesday of this week....and Wednesday, Thursday, Friday of next week. I have six precious days off with my children for Christmas. I honestly nearly cried when she did it for me. I didn't ask for it. I had hoped to have Chistmas Eve off but assumed I might not even have that necessarily.

I took J to the dentist to repair some badly decaying teeth yesterday. He was supposed to have them repaired in February, the second time Micah went inpatient. We moved the next month. Getting him to a dentist here took three months. That appointment fell as Micah was dying. Getting it rescheduled took another three months. Incredibly, the wait time to get the actual repair work done was another three months! I started with the family dentist we all see but they wanted to do 3 year old pulpectomy with nothing but lidocaine and a papoose board. Eventually, the best I could find here was apparently sedation but still using a papoose board. So, that took all of yesterday and it felt nothing like a Christmas break.

This morning, we have worked on homeschooling the two homeschoolers. This evening, we will do our long tradition. The kids will drink hot chocolate and watch a marathon of Christmas movies. II and I will lock ourselves in the bedroom and wrap presents....far too many presents in spite of a 3 gifts (plus the Christmas Eve PJs that we don't count) per child from mom and dad. Tomorrow, we will do our other tradition. We will take the littles (this year that means J, L and R) plus whomever did not finish making/buying all of their sibling gifts to shop. Normally, we take them to Goodwill but I'm not sure that will work this year. We may take them to a dollar store but I'm loathe to give up supporting Goodwill in the process if we do. Our local Goodwill opened this fall and the inventory is still very shoddy and mostly corporate infused (with insane price tags attached).

I bought Gingerbread House kits. I haven't done that in several years (before the poverty years) and I'm not certain how that will go, but we'll give that and baking a try tomorrow and Sunday. I had imagined I would be in church this Advent season, finally having found a church this fall for the first time since the church threw us out over Micah. However, I find the emotions of trying to tolerate church to give the church community to the children AND deal with our first Christms with Micah too much. We'll return to church after Epiphany and avoid that part of the church calendar this year.

I'm so grateful that I get nearly a full week to just be a mom right now. As conflicted as I am over working again, we're not to a point where I could consider quitting. So, I must accepted the current circumstances and being here with the kids is a precious gift for my soul at the moment.

I have made some HUGE decisions. The choices that have tormented me for the last several years have been clearly answered. I have a mile marker for when I *can* quit, as well as one for when I would *like* to quit. I know where I go from here and what career path I am headed down. Working has been an AMAZINGLY positive choice for this family and myself, even though I hate going every day and those feelings can raise their head at work if I don't stay busy as well. Actually, that feeling contrasted to how I felt doing Sociology was a BIG part of what finally answered the question of where I wanted my future to go.

Today, none of that matters. I still have Barton to work on with my sixth grader, and 100 Easy Lessons to do with my Kindergartener. I have lots to do in this week I have off, lots of moments to just *be* with my babies and as a family again. Today, that is what matters.

Wednesday, December 19, 2012

Manchild, hold your promises

Racism. It's an ugly word no one wants to admit. In America, it's a state that far too many want to believe we have overcome.

When Trevon Martin was killed, I didn't blog. There's just no words to describe the fear in every mother's heart who has black sons when you hear a woman's precious child was killed for wearing a hoodie. I am well aware of the risks of a DWB. I'm aware of the safety rules and lessons I must teach my sons. I am not a person of color. I cannot make myself a person of color. I also cannot change that my sons must face this world as men of color.

I've seen parents in transracial adoptions where they truly believe they can become the same color scheme as their children. To everyone around them, it just looks bizarre. I've seen more than one child with a look of fear over it as well. Conversely, I've seen families who believe they can be truly colorblind and there is no reason to worry....that the world will simply fall in step with their progressive mentality.

I cannot create a situation where I can either change my ethnicity nor ignore my sons ethnicities. I have never presumed to try to do either. Instead, I attempt to offer my sons what I learn from those who are of color, especially safety rules for interacting with this world. I then offer my sons a safe haven. The world will always see their color. My home will always be an unconditional safe haven of love where color, ethnicity nor how we entered this family is what binds us but what makes us each unique and wonderful.

Yet, I had to sit down and explain to my newest son what racism is. Sadly, while I do not see his tone in a negative light, we live in a tiny school district where some do. The school officials let this son be bullied and initially missed which child was actually the aggressor. The bully proved his lack of ingenuity by bullying repeatedly in the months after he first picked on my child. However, some of the damage to this already hurting child was already done.

These days, when someone wants entertainment at school, they start by trying to get a fight started between this son and the bully again. My son is scared that people continue to think he is not a good kid. His background involves those who were supposed to love him forever always assuming the worst in him and he's terrified people will still think that way.

I was forced to teach this child was racism is because the basic fact is that I believe some of the struggles he is facing is that people don't always assign positive intent to this child first. I cannot say this is a certainty. However, it has now happened often enough, despite his desperate efforts to not let people believe the worst in him when the rumors start swirling yet again, that I had to explain to him that sometimes people see more than just what is before their eyes, even when it's wrong. This is the part of my job that I hate. It is, however, a piece of safety that this child has got to understand and given the extreme isolation and neglect he experienced previously it's not something he has grasped on his own.

Today, I failed

Today we had a patient in our center that was not normal for us. We had a 10 year old child with a progressive disease that will shorten this chid's life. She has been treated several hours away from here in the hospital, but her doctors set up so she can get her monthly medicine locally instead of having to drive.

I wanted to be reassuring to this mother and child. I wanted to remember what it was like to BE her, and to help her feel empowered. I wanted to reassure her that they will learn to live with this and will understand everything that is happening and how to put one step in front of the other....eventually.

Instead, I cracked. I didn't cry. I did that once at work and swore I would never be that vunerable again, no matter how shattered my heart might feel. However, I had to step away from this mother as I watched her shake, to refer to a piece of paper where the doctor had written down for her what was going to happen. I watched her struggle and nearly panic when her child's blood pressure was sky-high. I did explain to her that the blood pressure was because the little girl was scared about the needle required to start her IV line for her medications.

After they were set up and and I had taken time to acclimate myself, I forced myself to do the paperwork process with them. I didn't want to run and hide from a sick 10 year old. I need to be stronger than that and I need to be courageous enough to show this mom she CAN find her courage.

I walked this mother through nearly 20 minutes of paperwork. It's the standard CYA protocals in medicine. However, it can be confusing. Several times, the mother nearly flipped out as I tried to educate her on the process of getting treatments. I explained. I answered her questions. I took my time and I was gentle with her.

She thanked me when we were done, but I could have done better. I should have done better. All I can promise myself is that next month I WILL do better. Sadly, they will be there every month. I have more opportunities to learn how to help other mothers without being pulled back into my own pain and grief by touching it to help others.

Sunday, November 25, 2012

My choice

I didn't have to go back to work. We have acrued insane levels of medical debt in the last 12 months. It's not suprising. Everything you read about how people's health tanks when they lose someone very close to them has been totally valid x10 people this year, not counting the expenses of the one who actually died.

In the last 12 months, we have endured 10 Emergency room visits, 8 hospitalizations, 6 ambulance rides, 3 surgeries, 1 helicopter life-flight, and 1 death. We have good health insurance. However, there are always co-pays and deductibles. When S first came to us, he was not under our medical insurance. All of the promises of the first adoptive family to cover his medical expenses was a bunch of malarky--something we soon learned ALL of their so-called promises were. That added more medical debt. Even all of that doesn't account for gas to drive to medical appointments, food that has to be eaten out, mealas that must be consumed while inpatient with children, etc, etc.

I was already considering going back to work this fall because I wanted something for ME. As the medical struggles continued to pile up and pile up, well after Micah died, our budget became tighter and tighter.

In the past, we always put my staying home as top priority. In times when finances got tight, we would buckle down, drop to needs only spending and get our financies back under control. We can absolutely do that now. We could tell the children no spending, no allowances, no eating out....no nothing that is not a strict need. We would make ends meet and by the first of the year we would start to get back on top of the mess, by spring it would be forgotten.

Except, something has changed in ME now. The two years II did not have a full-time job and we were both in school, we lived on the bring of oblivion. We were in abject poverty and sometimes even basic needs were denied because there was no money to accomplish such things. I had never lived like that in my life--EVER. When II went back to work last summer, we were pulling out of that poverty and I prefer it that way. We were back to more than comfortable and I liked that lifestyle. I liked being able to buy simple things for the kids when they needed them.

The more the medical bills acrued through this fall, the more I didn't want to go back there again. We had more than suficient funds to meet our needs. Yet, I wanted MORE for my kids now. I wanted to be able to honor their wants and not merely their needs, like we were always able to do before outside of those two years.

I realized I did have a choice. I could remain home, just like I did all those years and just like I contributed to II's stress by leaving him the ONLY wager earner. Or, I could go back to work. I can make GOOD money and only work part-time. With that money, we can maintain the level of living the kids are accustomed to most their lives while we pay off the debts. By spring, all of the medical bills will be paid down, and we'll be better off without having to stop living a normal, middle class life.

For the first time in our marriage, my choice was different. I no longer felt that staying home was sacrosanct and the ONLY option. I no longer feared the idea of finding reliable childcare for the little ones, nor asking II to support me in the adjustment back. I pay the childcare for daytime care of the ones at home. I pay allowances for the teens to watch them after school until Dad and I get home. I made a choice, and it wasn't the choice I always thought I would make.

I am working, and when I'm there and not thinking about how much I miss my babies, I am too busy working to struggle. I am miserable when I am home and thinking about going to work, but it goes away almost immediately once I'm there again. I want to give myself six months. I always swore I would start working on what to do with my career once the baby was three. I already finished my degree sooner than I thought. While part of me did feel the pull back to simply staying home again. At the end of the day, I made a choice and my choice was to go back to work, for so many reasons that made sense this time and I never imagined I would choose for most of my years of parenting until now.

Saturday, November 24, 2012

Passions

Little L reminds me why I like homeschooling so much. I had started her in public school this fall for Kindergarten. However, she was not learning anything new. She was so tired that all she did at home was rage and fall asleep before dinnertime (and we generally try to serve dinner 5:30-6pm now that we have kids getting up at 6am for school). She was raging every morning about not wanting to get ready for school, raging every evening because she was overtired and complaining about how bored she was.

I made the decision that I would return to my passions of homeschooling for the foundational years. I brought L home. I wasn't sure how I would balance homeschooling with a part-time job initially, but I knew I wanted to try to balance things instead of just giving up. I never entertained the concept of balance when the other kids were little. It's possible I couldn't have done it, but I knew I also never tried either.

As it turned out, I found a homeschooling mother to provide childcare when I work. Her oldest is in kindergarten, so it was easy for her to add L into her schooling routine. J plays with her toddler boy, which actually makes it easier for her because J lovingly entertains her son. Actually the two of them have become quite obssessed with Bob the Builder and if they are not watching to "learn" from their "favorite builder" then they are attempting to copy building all over the house on her. However, it keeps both boys occupied while she does the homeschooling with the girls.

There was just one problem. I was creating most of L's curriculum this fall. Having homeschooled for over two decades, I wasn't in the mood to purchase curriculum yet again for basics I can teach without formal materials this time. Except, the childcare is teaching her first kindergartener and is heavily dependent upon curriculum to guide her. That meant that she couldn't ad lib and expand upon what I provided for L and thus L was finishing too quickly.

This wouldn't be a maajor issue, except L decided she would do the other little girl's schoolwork....faster than the other child could accomplish it. So....mommy bought some more formalized materials that L can use at home and at the babysitter's house. It is working out well. I'm just concerned that L will go through what is supposed to be a full school year of materials a bit TOO fast. I'll buy more if so. It's just funny to me how fast my children learn when provided lots of opportunities and are taught to learn for the sake of loving knowledge and not task oriented.

For years, I lived in fear of public school. Unfortunately, when you drink the kool-aid of the religious right homeschoolers, you tend to believe public school is truly something to fear. Then, I put my kids in public school and discovered that it is not an entity to fear, but there are good and bad schools. Finally, I have come full circle in realizing that while I understand why public schools build foundations of learning in the manner they do, it is not how I want my children to have their foundations established. We have had far more success when I homeschool for early elementary and then transition the kids in middle school. Those who have transitioned in that manner have thrived. Everytime I have tried using public schools too early, we have issues. S came to us at the high school level, having never been to school before. I suspect his transition would have been easier if the last family had not used "homeschooling" as a mask for severe educational neglect. However, I see a lot of social struggles that S has experienced which lead me to believe if I am going to put the littles in public school at some point, it really needs to be done before high school years.

So, I have found peace in accepting I will homeschool the elementary years of the last two littles, but like their older siblings, I will transition them into public school when their foundations are strong. There is only one child I will refrain from ever putting into public school. The combination of severe dyslexia, Asperger's Syndrome and insanely high IQ is a BAD combination for public schools. I had to laugh when the middle school Psychologist (the same one who has been sweet and unbelievably helpful in transitioning Ch with his ESL and spelling challenges) gave me a funny look when I described C and asked me to please stick to my committment to never put him in public school, as no public school can provide the very unique, one on one education that C requires. I've actually been told this same thing by several college professors, so putting C into public school is not actually on the table. However, outside of the child I wonder why God thought I was capable of helping him thrive and overcome his Eistein level challenges, I realize that the others will eventually go to public school.

Teaching L kindergarten has reminded me that I really do LOVE teaching. There's little enjoyment for me in schooling C. Teaching him is the constant experience of having a sponge suck all of the moisture out of you and leaving you exhuasted for the effort. With L, I have remembered the passion I brought to homeschooling before I drank the fundamnetalist kool-aid, the teaching I pursued because I knew I could do better for my little ones than assembly line education. I am also keenly aware that these years are rapidly coming to an end. While I count down the days until I can turn C over to PhDs and he can pepper the with his non-stop questions, with L and J I realized they are the end of an era. I get the thrill of building their foundations and then I get one last time setting my babies on the world and watching them integrate and thrive. I will honestly miss these days when they are gone from us.

Friday, November 23, 2012

Transitions

I cannot decide if I am okay working or if this might be the worst mistake I have ever made in my life. Daily, I remind myself that it took a full six weeks for baby J and I to both adjust when I went back to school three years ago.

I have the best childcare arrangements I have ever had for my babies before since I stepped into the arena of needing actual childcare. Ironically, it's also the cheapsts costs I've ever paid before, even after I offered her more than she charged because I was concerned she would lose money on my babies at the rate she quoted me. She provides homeschooling for L and she provides a write-up of the little ones day and what they ate every day she has them. They LOVE going there, more than they have liked any other childcare arrangements before now.

It does help to know my babies are in good hands and are deliciously happy while I am working. Even so....I'm just not sure if I am really okay with leaving my kiddos. My original plan was to work nightshift so I wouldn't require childcare for the kids. My original plan would have required I have the littles watch movies on the mornings I got off nightshift but to be fully here by the time the older kids got home from school.

I really, really wanted to only work two days per week and right now I am working three days per week. I was specifically hired for the purposes of expanding hours at my office. When we do that, there is a strong possibility that we will move to 12 hour shiftss and that would reduce my days to two per week. However, that is not a guarantee and for now I am working three days per week. Three days per week feels like too much time away from my babies. I feel disconnected and like I barely have time to see my kids before it's time for them to start getting ready for bed.

The other problem is that when I work three days per week, all of my errands, appointments, visits to schools get jammed into one of the two off days. I really don't get time off when I have to accomplish so many things while I'm technically off. I am hopeful this will settle down but right now it feels quite overwhelming.

As a nurse I am not easily reachable when I am working. Technically, possibly legally, I am supposed to get breaks morning and afternoon. However, I am a nurse. I don't get a break if patients require attention. I rarely actually get those breaks. I take lunch, and during lunch I check in with the kids, check to see if someone is trying to communicate with me and jam my food in as fast as I can. Lunch is only thirty minutes out of my shift.

Yet, the work.....I am REALLY good at what I am doing. We work with primarily chronica or terminal patients. Most days I have the opportunity to encourage someone who has trouble getting needles into their veins but is terrified of getting a port placed. Today, I even pulled up pictures of Ch's port so show a woman that you cannot SEE a port when it is not accessed. For twenty years, she has faced continual needs for a chronic cancer type condition. She's terrified that a port will take away form her quality of life. She was stunned to see how much a non-issue a port can be. I get to educate and reassure patients daily. I get to help them feel better in real and tangible ways when they are with us.

Then again working with terminal and chronic conditions, we have a nurse assigned the duty of reading the obituaries in the paper every day. We have to watch to see when our patients die. We had one first of the week coming for his last visit and will be starting with Hospice next week.

It's a good compliment to the reality that I wanted to work for Hospice and our only local hospice requires you hold the Bachelors in nursing, which I don't have. I am using the skills I am absolutely BEST at using. I can see that I make a tangible and immediate difference in the lives of those I work with every day. I am also so insanely busy at work that I don't remember to miss my babies.

I don't know what the outcome of this new adventure will be. I really am committed to sticking with this for six months. I really believe I cannot make a full opinion if I don't give this a full chance to work. I just cannot decide if this is something I want to be doing a year from now, or something I will do temporarily just to escape and to use my nursing skills again. I don't know.

Sunday, November 18, 2012

Here it is.

I finally saw a dermatologist this week. I have had a nasty, itching, flaking rash for ages. No two doctors have agreed upon what this actually is. Every measure they have taken has done little to nothing for the rash. In August, I took one of my children to a pediatric dermatologist for a different rash. Thinking they might be related I showed her mine. She emphatically stated I had Psoriasis. Psoriasis is an auto-immune disorder where the precense of stress causes your body to erupt into these lesions that look like rash. She was the only doctor to be so certain it was Psoriasis.

I was devestated with the possibility that I might have a third auto-immune disorder. I tried another caregiver and she tried treating the rash as if it was fungal based. It provided a small improvement of my symptoms but then faltered and did nothing else. I finally agreed to see a specialist simply because I was too miserable to continue to live like this, even though I have huge personality struggles at the idea of spending large amounts of funds to deal with my medical condition.

Today, mere days after I started the treatments under the guidance of the specialist, the lesions are 80% gone. Those that are still lingering don't hurt and rarely itch. My body is healing rapidly. It was so simple to fix yet so difficult to overcome my internal guilt and my inability to care for me to get there. So much for thinking I was making progress at taking care of *me* and not merely everyone around me.

My oldest asked me as this stuff rapidly disappeared from my body, when did this come. Honestly? I cannot pinpoint the day I knew I had some sort of rash on my body that I could not overcome on my own. My first clear memory of this stuff happened 18 months before Micah died. Immediately after Micah contracted influenza, I remember sitting in class, scratching behind my ears and realizing I was flaking all over myself in class. I have no memories of it being present before that point. I cannot guarantee I didn't have it, but I don't remember it.

I do clearly remember when Micah got influenza. We called his doctors and gave him Tamiflu immediately. However, influenza is terrible on lungs. On a healthy person, it can take approximately two years for their respiratory condition to recover from one bout of genuine influenza. For a Cystic, it is far worse than even that. II and I discussed way back then the chance that influenza might be the final straw that Micah could tolerate. 18 months later, of constant decline afterward, he was dead. To be the best I can determine, this rash was a direct response to the stress and turmoil of losing my son. I do know it stayed on my head and ears until the very week Micah died. The lesions appeared in all sorts of random points of my body only in the week that Micah died, and after he died they overtook my ability to function and think for awhile.

Psoriasis is an auto-immune disorder that you are not cured from. Once you have it, stress can always cause it to return. The doctor says we can absolutely manage this. We can eliminate this flare-up and put this back into remission. However, it can still happen again at any point in my life. I don't know if a lower threshold of stress will cause it to return or if it would require something as dramatic as my child dying again. I only know this makes three auto-immune disorders I know suffer, and every additional one increases my risks for Lupus, the one I fear.

It's been a long, struggling fall physically. Most of the research on grief I can find says your health will rapidly decline after you lose someone very close to you. They don't tell you that your physical struggles will make you lose yourself and you won't even remember you are supposed to BE grieving some days. This rash was the last piece to the puzzle of my physical ailments. However, some days it now feels like the grief is fresh and new when it washes over me. Now I have to grieve in process in the manner I wasn't doing so well when I was numb and sick from thyroid, blood pressure, asthma flare-up and psoriasis.

Saturday, November 17, 2012

Working 9 to 5

I got a job. It's only part-time, and I'm so not sure how long I want to do this. Orientation was a bear and I've committed to giving myself until first of the year before I decide if I like it or not.

I really enjoy my job when I'm actually working. We work a lot with chronic and terminal patients, providing them with medication administration that makes them feel better. I can see I am making a difference to them. I know that my clinical skills allow for them to be treated gently and that I make a huge difference in their day when they come to see me.

I had asked the director of Hospice if I could work for them. She felt I would make an amazing Hospice nurse but she only hires Bachelor prepared nurses. Having my Bachelors in Sociology didn't compensate for lacking my Bachelor's in Nursing. So, hospice was not an option at this point in time.

I then experienced a health crisis and brought L back to homeschooling and really thought I would just not job seek afterall. However, I made a committment this spring that when Micah died I would need to go back to work for awhile. I am highly introverted and I know I can hole up in my grief and shut the world out. I knew I would need to have something consistent like a job to force me to step out of my hermitage.

Then, I saw a position that fit with my last several years of experience perfectly, and I had a direct connection to the department, so I knew I could get them to see beyond my not earning a paycheck and recognize I have been nursing all of these years. So, on a whim I applied. Three weeks later, I got the job and this month I began working again.

I am only working part-time. For now, I have three days per week, now that I'm out of orientation. In the upcoming year, I will likely drop to 2 days per week when we go to 12 hour shifts for all of us in the department. I had to work more than that for orientation and it was pure torture for me and the kids, but it's just part-time now.

After the last experience with a nanny, finding safe and reliable childcare was vital to whether I could take the job. When at-home, I never had to account for needing childcare for my babies. In college, II and I balanced our classes so we didn't need full-time childcare. I had a good friend that the babies LOVED who watched them for the one gap in the week we had, and in exchange I watched her kids once a week. She was awesome for my kids and they still love and miss her dearly since we have moved. However, she was not my lesson in childcare balancing acts.

Our current provider is wonderful with the kids. Like their part-time caregiver before the nanny disaster she gushes constantly about how wonderful they are. However, she had an emergency right as I was starting back to work and thus I got to learn in a trial by fire how you balance work and childcare.

For all of the working mothers out there, let me say this is exhausting! KUDOS to you for working at finding that balance and not throwing your hands up in frustration. My patience in this arena is still a work in progress. Mostly I am grateful our caregiver is back to work and I only have one conflict in my schedule before the end of the year now.

So, now I am working, part-time, and homeschooling two children, and in the spare time I don't really have I balance the needs of the rest of this large family. Then to make sure life stays VERY interesting, I will return to academics in January. Fortunately, my classroom time will be done online for my BSN. However, my clinical work will need to be yet another day I step out of the house and leave my babies. I am hopeful I will have transitioned to 12 hour shifts before I begin those clinicals so I will simply remain at 3 days out of the home and still spend the rest of my time here and available for my family.

I don't know if this is a career path for me or not. When I am at work, I love what I am doing. I am quickly gaining confidence and less dazed about the normal functions of my department. However, I miss my babies like crazy--the big ones AND the little ones. I miss being home and seeing all of their steps and being 100 percent available for them. I just do not know if I will continue this for long or if I will give this six months, consider it an honest effort made and come back home. I figure only time will determine that answer.

Friday, November 16, 2012

Anniversaries

Every time we hit the month anniversary of Micah's death, something catastrophic seems to happen to us.

The first month anniversary, the nanny went off the deap end and we had to fire her. It was bad, really, really bad. II kept insisting she was just overcome by her grief and running away and I just kept saying she was crazy and I wanted her away from myself and my kids. Instead of being able to even process it was the ONE MONTH anniversary of my son passing, I was in survival mode trying to remove a parasite from my life and protect my kids from the crazy.

That crazy kept going for nearly a month, especially with the trashy call to CPS because the nanny decided that *I* and not her ex-husband called CPS on her for events that were necessary to call CPS. The case was settled quickly, the call was nothing but lies, and the case worker clearly felt uncomfortable even having to bother us, but the events were insanely traumatic for everyone. Here we were raw and grieving and we had to allow an invasion of our home and access to our children who did not want anyone outside coming in just to prove that lies were lies. All I kept saying was that her actions proved why I needed to fire her.

The second month anniversary, I was having significant health issues. I developed Psoriasis that was consuming my ability to function night and day. I actually had it for two years at that point, without knowing what it was. It jumped off my head as Micah was dying. In the stress after his death it just went haywire. So did my blood pressure. My thyroid also tanked on me. So, on the second month anniversary, I developed chest pain and shortness of breath.

At some point after we discovered my blood pressure was approaching stroke levels and I was trying to rationally deduce whether the shortness of breath and chest pain were *really* a concern, I realized it was time to let someone else evaluate the situation.

I was not having a heart attack, as the Emergency Department determined. We did discover that the children were causing a direct reaction in my blood pressure, though there was little to do about it at that point. The chest pain? The cartilage around my ribcage was inflamed. I had taken myself off NSAIDs out of concern that after two months of taking them daily for the pain I had started feeling when Micah died. Evidentally it caused the inflammation I didn't know I had to flare back up, thus the chest pain and shortness of breath.

Once again, it was not safe for me to process the anniversary.

On the third month, the most bizarre thing in the world happened. My sweet son with Hemophilia came home from school and started puking. I figured he had a virus. The morning before the anniversary, he felt "dizzy" and I figured with his car sickness issues, he would puke on the bus and get sent home so I sent him back to bed instead. At ten o'clock, he came downstairs to inform me he had puked "black stuff." While I was evaulating him, he passed out and hit his head on a metal chairframe.

After a careening ambulance ride, two units of blood and a transfer to Children's hospital, the dear boy found himself having GI surgery on the day of the third anniversary to determine where the pure blood he was puking was coming from.

It is very safe to say that processing an anniversary was the furthest thing from my mind that day. Instead we learned that our other son had an H. pylori caused ulcer. It might be uncomfortable and painful for a normal person. With Hemophilia, it filled his guts with blood and put him into a medical crisis. We were grateful he was safe and sound and released to come home again, antacids and two antibiotics later.

Then we came to the fourth anniversary. Surely this time we could avoid the bizarre incidents, right? Nope, one of my children became so overwhelmed with their grief that it became necessary to take them to seek professional assistance, inpatient. My heart breaks that one of my children is that overcome in their grieving that therapy and supports were just not enough. However I know said child is getting the support they need now so they can process their grief better and return to the full functioing soon.

This precious child will be spending Thanksgiving away from us. We've promised to bring food and a visit that day. The rest of us have made a choice to boycott Thanksgiving this year.

Last year, I took the kids to my family Thanksgiving. One of my brothers did not come, since he had a newborn child and did not want to make the trip with a tiny baby. However, the rest of my entire family convened at my dad's. I knew what I had not told the children, that it would likely be Micah's last Thanksgiving. Certainly, it would be his last one where he could function as well as he was at that point. He was surrounded by family, by love, and by those he adored. For Micah and his siblings, it was truly a perfect Thanksgiving.

There's nothing we could possible do this year to not feel Micah's loss even more accuately on that day. I can make a turkey and serve it to a house full of weeping children. Or....I can do something totally off the wall and distract all of us. We'll be going to a Chinese buffet that day. Afterward, we're going to the movies, something we had to stop doing with Micah because he could not behave and be quiet....and frankly we grew tired of the 30 potty trips just so he didn't have to sit still. He did not enjoy the movie theater. It was too overstimulating for him, and too much of a stress on the rest of us to try and force him to go simply because the rest of us enjoyed it. This year, we won't have to decide who is on Micah bathroom duty but merely whether we will all see ONE movie as a family, or whether we will divide into two movies at the same time.

I can only hope we stabilize soon. Grieving has been raw and exhuasting for all of us. My own grief has manifest itself physically and I am now finally nearly on top of the medical fall out from losing my son. Even as we are still often struggling, I am stepping back into a life that is also for me, focusing, finding balance. I hope to write more soon, but I am juggling homeschooling only two children, working part-time after what feels like a lifetime at home, and preparing to re-enter the academic arena this spring. There are positives and negatives in this journey beyond the grieving this family is experiencing. I made a promise to never lose *me* in my life again. Some of these changes are about keeping my promise to myself. Others are simply the reality that life must go on for all of us, no matter how much we miss and desperately wish we could have Micah back with us.

Saturday, October 6, 2012

Glimmers of hope

Yesterday morning, we recieved an unexpected phone call. When the ex-nanny filed false allegations with CPS against us, they concluded their investigation in 2.5 weeks. However, while they told us they found nothing of concern, wanted nothing more from us, nor did they anticipate unearthing anything else, they never formally close an investigation until they reach the 60 days this state allows for them to conduct their investigation. They insisted to do so would not be "due deligence."

Beaucracy at it's finest, no doubt. CPS understood that their investigation interfers with S's legal case (and the nanny knew this when the call was made but apparently keeping S safe and secure didn't even register on her radar). We left it alone and honestly did not stress more over the time situation more than absolutely unavoidable. We assumed the case would be closed at the end of October when their sixty days were up. We just hoped the judge would not penalize *us* for this situation and it's interference in S's case.

As much as I want to share S's story, because S has been through more than anyone could imaagine and that story and this child's triumph and strength of spirit is stunning, I cannot speak of the case for awhile longer to protect this child who entered my life as an absolute surprise. S's situation was very precarious for awhile. The challenges to keeping S safe were well known to both the nanny and CPS. All I could say to CPS and to others invovled with the case was that her choice to call CPS with lies demonstrates exactly why she was fired and considered unsafe to this family. However, it doesn't negate the damaage she did on her way out the door.

As of yesterday morning, the damage and danger is mostly mitigated. For reasons that were not explained to us, CPS has reversed their position that they are not able to close a case early and they have formally closed our case, unfounded of course.

Yesterday afternoon, I saw a new doctor. As I got sicker and in more pain since Micah died, I became more aware that there was something more than grief going on. The rash that had been diagnosed by two doctors as eczema and another as psoriasis did not respond to any treatments but grew far worse. My blood pressure destablized. My body ached. My thyroid went completely amuck. I was in misery. When I attempted to be seen by my doctor, his staff was beyond frustrating. Ultimately, I realized that I cannot do battle with a doctor's office staff and craze a partnership with my doctor through this time. I believed I had this with my doctor, but it was clear the same was not true of his staff. So, went to a new doctor and saw her yesterday.

She was kind and compassionate. She listened to me. She acknowledged my grief and the complications it brings to assessing my health. Most of all, she was confident she can work with me to restabilize everything. EVERYTHING....that means even the rash. In fact, she already started treatments that the rash is responding to.....because she is the first caregiver to say it is fungal. In 24 hours, the rash is in full retreat and feels better for the first time in ages.

We are attacking this both typically and systemically. She cannot start the oral medications until she runs labs to check my liver function. Those labs have to be run with me NPO (nothing by mouth). We went to the lab this morning and the orders were missing. So, for this weekend, I am workinh with topicals and I will call her office Monday to get the lab orders for the orals straightened out. After two years of misery, and months of giving up hope that this would *ever* get better, I have hope.

Monday, October 1, 2012

Running forward

Today, I found the courage to finally call one of my oldest and dearest friends and ask him why. Why was he silent when my son died? Why has he been silent since then?

I tried to call him when Micah died. I tried to text him. By the time I realized he never responded, nor did he post on facebook, like so many who didn't know what to say did, a month had passed.

I had no idea what had happened. I feared he deliberately ran away, like others did. Three of my own siblings ran away, so I know running from my pain is not an unheard of response, even from people who supposedly love me. However, those siblings did at least let me know they loved me, even as they ran.

Today I called him and asked him what happened. He was busy. He lost my phone number. He didn't think about facebook. He's been under tremendous stress as a single father and with a difficult work situation.

They were all truthful. They just weren't the truth of why he disappeared.

Underneath all of the excuses, he admitted he just didn't know what to say. Everything he could say felt inadequate. So he said nothing.

This friend of mine lost his best friend in high school, his first true love and the girl he saw spending the rest of his life with. I know death is painful for him.

Running away from me in my pain is just as equally painful. I know he loves me. He is the big brother I never had and in many ways I am closer to him than I will ever be with my siblings. I know not he nor anyone can know my pain, protect my from my pain, or make it better. I also know that I need to be reminded that the people who love me are still here...will still be here when I find the other side of this chasm of grief.

He said the only thing he can say now. He's here now. I can't ask for more, and I don't expect more. It does hurt when those who love me run away from me instead of simply loving me right.

Where do we go from here?

There was never a life without Micah. There was never a plan nor even a vision of what it would be like or what we would do once Micah died. It wasn't that we didn't know he would one day die. Death hangs in the shadows of every day you walk with Cystic Fibrosis. It's always there; always the nemesis that you know you won't ultimately win. However, you just cannot take it out and examine it. If you do, then you will be incapaciated to survive the day you are living when death is merely in the shadows. Those are the only days you get, you have to live them as if you don't know death is always there.

So, you never let yourself think about what will come afterward. I still tell other CF moms my mantra that got me through every panic attack, every crying fit, every sleepless night, every moment that I wanted to curl in a ball and cry until I could convince death to just leave us alone.

"Not my time yet." Today was not my day to mourn and to cry. So, I did not choose to succomb to that grief when it was not yet mine to embrace.

I knew the day would come that it was my turn.

What I never envisioned was what would come after that day.

I am now 2.5 months past my time and I don't have a clue where my life goes from here. I cannot measure a lifetime or a future right now. Sometimes, the gas pumps still argue with me like they did that very first week and I rarely win the fight. It mostly happens if I use my Paypal card at a gas pump, and I cannot for the life of me figure out why. The day I had to pick S up from the hospital two weeks after Micah died, I fought with multiple gas pumps before one of them finally agreed to give me the gas I needed to bring my other son home again.

If I cannot figure out how to win a battle with a gas pump, why do people think I can tell them what comes after this?

I love my father. I feel so blessed that after being estranged for the first 30 years of my life that we have rebuilt a relationship of love between us. I love that my little girl can call her Grandpa and tell him good morning before she heads off to school just because she wants to. He is the grandparent my children have and I know the gift that it to them.

Last Thursday, he called me up for yet another time to ask what our plans for the future are. There's a church an hour from us that is very interested in hiring him. He is finally far enough out from the divorce for churches to consider him again. I do not know if all Mennonite conferences have the same policy, but his conference requires a year after the divorce is finalized before you can hold a church position again. When he hit that mark last spring, he started looking for a church again. This is the first to look very likely that both he and the church have genuinely been interested in moving forward.

It's New England, which is vastly different than where Dad lives now. However, he spent years in the northwest so the climate is not terribly different. The culture is much different but New England is ALL about being the village that is a support a single father with struggling teens would thrive in.

He wants to make his decision on whether this move will put him close to 3/4 of his grandchildren or not. I cannot promise him we will stay here. I don't know if we are staying. I'm not sure I care. For every positive about staying, there is a negative. For every positive about leaving, there is a negative. This area would be good for Dad's family whether we are local or not.

The idea of wanting us to KNOW where we go now is not unique to my father. Everyone wants to know what we will do, where we will go, what lies in our future. They all mean well. There are just only a handful of things II and I both know for certain.

We will not adopt again......at least not in the forseeable future, though we don't feel like we can really answer for the rest of our lives....mostly because everytime we say no more kids, another one enters our lives.

We will live somewhere. We have no idea if it will be here or back home or someplace completely out of left field. For now, the job is here and we want the children to remain in this wonderful school system for the school year.

I will go back to school. Almost certain it will be Nursing or Sociology but genuinely not certain which one it will be.

I will hug my children often, as often as they can tolerate me hugging them. My teens constantly roll their eyes when I hug them, and I hug them anyway.

We will finish the legal and paperwork process to complete S's adoption. All that is truly left is for S to heal enough to find his voice and be ready to tell a judge he consents to the adoption. Right now, he can articulate that he wants us to finalize the adoption, but the thought of being empowered enough to use his voice, according to him, makes him itch all over. S is safe and the finalization is a formality, so we wait and give him time and space to heal first. He knows the finalization is merely a formality and knows he is safe and home. If he cannot find his courage by spring, we'll look at addressing this in his therapy.

I am going to fight to get my health back at all costs. I have an appointment on Friday and it will not be my last to work on the issues that have arrisen in the maniestation of grief I am facing.

I am going to continue to work to help my children heal, to give them safety, normalacy and respect to grieve in their own way and to graduate out of their therapies as they are ready to move forward.

Everything else? The really big decisions? I don't know. There was never life after Micah to even GUESS where we would go afterward. Right now, I am in this deep chasm. I cannot see the way out and I don't think I am supposed to yet. I know I am not supposed to be able to tell you what road I will start driving on once I am out off this place when I cannot even see the way out yet

Cardinal sins

So....

here's something you never, ever, EVER say to the grieving mother of a dead child.

You NEVER tell a mother who has lost her child that you don't believe she loved her child. NEVER.

You especially don't deliberately seek her out for this special brand of cruelty.

You don't somehow convince yourself of your special crusade by showing a henious lack of humanity. You don't make yourself feel better for your own problems by trying to cut down and hurt a mother who buried her child.

It's crazy to me that sometimes people see my palpable pain and immediately attempt to negate it. Yes, I know it's hard to wrap your brain around my pain and grief. I know that I am living every mother's worst nightmare. I know that it would be easier for you to somehow make this about you, about how you can protect yourself from what I am living.

Don't.

If you cannot handle seeing my pain, then simply walk away. I don't expect anyone to solve this for me. It is not your nights punctuated with his voice, with dreams so vivid that I can still feel his hands in mine when I wake up to discover that the closest I will get to holding his hand again is a plaster mold that sits on my mantle. I don't believe anyone can take my pain from me. I know it's uncomfortable to see me and to know that my son died.

Just walk away. Don't try to make it easier for yourself by villianizing me. Do NOT come to my blog on a false crusade and attack my love for my son. Do not show your capacity for monstrous hate by projecting that vileness upon me and how I loved my son.

There are people in this world who have the knowledge to speak about my relationship with my son. Since I keep this blog strictly annonymous and barely trafficked, most of those people don't even know this blog exists to speak here. Not one person who walked this five year journey with me would ever suggest such disgusting nonsense as accusing me of not loving my son.

This blog is annonymous very deliberately. It is not monetinized. It is not advertised nor promoted. It has only rarely been shared that it exists with anyone online. It is my journal, not my self promotion to the world. I made a decision to keep this online years ago, after II stumbled, in the belief that it might be stumbled upon by someone, sometime who might need to know that you can reclaim your life from bad circumstances, that what happens to us is not what defines us. Under no circumstances will I allow the annimity of this blog to be violated. Most definitely NOT for someone's bizarre and unprovoked personal vendetta.

Even so, no matter what any of the infrequent readers of this little corner of the world might think or feel about what they read here, or what they think they have been told about an annonymous blogger who has deliberately choosen to conceal her identity, do NOT accuse me of not loving my son.

I knew from the moment I first saw Micah's photolisting that he was terminal. I knew from the day they presented his case to us that he would not see adulthood. The extent of Micah's condition, of his needs, of what the reality of parenting him would look like was nearly overwhelming. Micah had nearly every point on our "cannot handle parenting" list (if we had known about his profound autism we would have realized he actually had every point). However, we immediately realized that Micah was never going to find another family to adopt him either. We genuinely thought with proper medical care we could get him close to 18, but we also thought we could get him a new liver.

We adopted Micah because the thought of leaving that broken little boy to never know the love of his own family, and to leave him to die without that love seemed more monstorous to us than we were capable of ever being. We adopted Micah because he neeeded someone to love him and we weren't afraid to love him.

Micah had been with us exactly three months the first time someone advised us to give up on him. Our trusted attachment therapist brought me into his office after working deligiently with Micah for months and referring us to a Psychiastrist for what was ultimately diagnosed as Bipolar Disorder. He informed me that it wasn't that he didn't know I could save this child. After years of working with my children, he believed I could save any child I set my mind to. It was that he felt the price I would pay to save Micah was too great, too much for my other children to lose, too much of a personal toll I would take to walk the journey with Micah.

That was the only time I truly considered giving up on Micah. I was absolutelyl stunned to be hearing that the best advice that a trusted professional could give me was to give up. I had not yet learned that this was a common theme of my son's life. That first time, we decided to take it to a genuine family vote. We sat all of the children down and told them what the therapist told us. We also told them Micah's prognosis. In that moment, when I did not yet love this child, it was his siblings who reminded me what this was about. Unanimously, they voted that we would keep Micah and we would love him, no matter what the future held for him and us.

On that day, I promised my son that I would walk EVERY STEP of his journey with him. I promised him that when the day came for him to leave this world, I would be right beside him, holding his hand. I did more than keep that promise. My son died in my arms, as I released him to eternity.

Death is ugly and messy. CF deaths are even worse than normal death. Those who didn't love Micah DID run away from his death. I sent E away from his death, not because she didn't love him but because staying was destroying her. No one paid me to stay beside my child to his death. Quite the contrary, just like what was frequently counseled during his life, I was repeatedly offered the opportunity to walk away from his death. My sister offered repeatedly to pay to place him in an inpatient hospice facility so others could deal with his dying. His Palliative Care doctor offered to admit him to the hospital and put him into a sleep that would last unti death came.

Every decision I made for Micah in life AND in death was motivated by what was in his best interest, not from obligation, not for an adoption subsidy and most definitely NOT to be praised by a world that still cannot understand my son. Everything I did was because I loved my son. Only a monster would ever dream of accusing me of not loving my son. No one with a shred of humanity in their soul would be so arrogant and cruel as to think it would be okay to seek me out and tell me that I did not love my son.

This family gave Micah what the world could not understand. We could not heal the lifetime of pain and abuse that came before us. We could and did love him. Micah was precious and loved by every member of this family. He knew he was loved, the one thing I feared he would die without knowing. In the night before his passing, he used his "I Love You" song to tell me that he loved me. His last clear sentence was to tell his Daddy that he loved him. Micah was precious because he was our gift. He was loved because he deserved no less than every other child on the face of this earth, nothing more and nothing less.

If you cannot understand my son and my love for him, then just do the only humane and compassionate thing you can do. Walk away. I don't require any person watch my pain. I will demand that no person mock my pain, though.

Sunday, September 30, 2012

Life and struggles

It appears that making false reports to CPS was not sufficient for the unstable, fired nanny. She has now targetted comments to my blog as well. If such comments show up, I will simply delete them. I will not engage nor respond. We have nothing to hide, and she was so kind as to send a colection of bizarre lies to CPS that I can truthfully state that the truth of my story and my parenting has been very recently vetted by the state with no concerns unearthed whatsoever. Trash calls CPS with false allegations, and trash is what her own actions proved her to be.

I will simply state a few facts. First, the state has vetted my family, compliments of the nanny and her lies. Second, we have passed adoption homestudies in three different states and been licensed as foster parents in two states. We are currently completing our fourth adoption in yet another state. We are an open book and the amazing children we are raising are a testiment to who we are as parents. We are not isolated. We are out and about in the community and more than willing to endure the scrutiny if necessary. Lastly, I have friendships that go back to my childhood. Close friends who are dear and tremendous supports to myself and my family. Though we moved away from support systems to provide the best for Micah, they continue to support us from a distance. Many of them have been in my home more times than I can count and have seen by myself and my nanny in action. Not one of those individuals has contact with the nanny. Not one of those individuals has found any truth in her accusations.

I will not engage crazy in my life. I cannot for the life of me figure out how I continue to attract it with my best efforts to avoid it, but my insane mother did teach me one very important lesson, to never engage it or you will feed it. She also taught me the meaning of the word projection. I've gotten quite good at recognizing projection in crazy when I encounter it. I just need to get better at avoiding crazy in the first place, thus why I established the entire boundary that I cannot and will not open my home again.

In the time since Micah died, I am learning that a broken heart is not a romantic term for mere grief. It is actually a biological response to losing someone you love, and losing a child is the worst kind of pain there is to endure. The children are doing well. Most of them are actually downgrading their therapy and acute loss does not seem to be a daily repsonse anymore. I, otoh, cannot force my tears and only feel free to release them in private and when I truly feel safe to do so. Instead, my grief is having some very frightening physical manifestations. I really thought that the emptiness would subside by this point. I no longer see and hear him except in my dreams. However, I still feel so deeply empty. Micah took so much energy and skills to care for that I often feel lost without his schedule to adhere to in a given day. Having sent all by one school child and the preschooler to school now, that emptiness seems to be magnified in ways I never imagined. I had intended to come and write about a broken heart today, and instead found attacks by my former nanny here. I will save that post for another day, apparently.

Friday, September 7, 2012

A season to rest and restore

I have now been diagnosed with three auto-immune disorders. Two of them have flared in the last year of Micah’s life and the choices I made to continue to reach out to other people, even at a time in our lives when we needed to be closing ranks. My father taught me all my life in a good Mennonite tradition that if you truly love God, then you pick up your cross at all costs and you live the example Christ set forth for us. I have lived my life transparently and always willing to give my last shirt to someone in need. I am no different in real life than who I am online, except I am tremendously shy until you get a chance to know me. For my faithfulness, I have been richly given nine amazing children, a family that doesn’t know what to make of me and a circle of friends I know I could trust my life with, as well as those of my children. Yet, I also have a set of enemies who either choose to not believe I am who I say I am, or who scorn the help I have offered them over the years. Sometimes, it seems those who wish me harm come in waves, waves that sometimes overwhelm me. In all of my years, I have only had a friend betray me twice. The friend from middle school and I reconciled years ago and I learned her betrayal had everything to do with her own struggles and not us. We are good friends now. So, in trying to figure out how to recover from this last year, its easy to realize that I must never again open my home in an offer to help someone. Many times I have offered the gift of hospitality both to friends in need and to struggling adoptive families who needed relief. I now realize that the types of people who would accept such an offer are not the kinds I have any business violating my children’s lives to help. What I am less able to find the answer to is how to not turn bitter and refuse to be the person God made me to be BUT still protecting my own health from consequences to those who aren’t always going to be better off because of my offer to help. I want to continue to touch other lives as God brings them to intersect with mine. Yet, I must protect the sanctuary my children need in their lives….and this newest diagnosis is teaching me that I must protect ME as well. I never thought I was invincible. I just thought I had a duty to live my faith in action anytime I could make a difference in the lives of others, and the current reality is that this is precisely what threatens my health, my safety, and my future. I am not super woman and the price I am paying now is my health. We are entering a season where we need to hold my health as precious. I got the lesson to take care of my health ten years ago. I just never got the tangible, real price I would pay for stress. The two things we are certain about is that in addition to considering our home a haven from all of that, we think this is the end of the idea of me returning to nursing and he going to medical school. My spirit may be strong and stubborn, but my body is not. I have grave concerns that if I use my gift of intuition for mental healthcare, I will absorb far too much from those I try to work with. We have just as much concern that I cannot do the solo parenting required for medical school. I don’t know how I get through this too jaded to open my heart to helping people again, but I know my main focus right now is to figure out how to get through this and reclaim my health. I won’t defend my character or my motives. When S attacked me verbally again this week, that is the realization I had. I won’t defend myself to those I thought were friends. I won’t defend myself to hurting teens who hurl misplaced pain at me because I am safe. I won’t defend myself to abusers who used my offers of help to avoid facing the evil they see in the mirror because they treated a child like a piece of trash. I already accepted the stress of mothering a hurt, abandoned and betrayed teenager. However, until my health is stable, the stress he brings is all of the stress I will bring into my life. Like Micah, his pain and brokenness is not his fault. Unlike Micah, he has not given up on healing. (He has a lot of things Micah lacked to heal too though.) Beyond these children, I am going to focus this school year on putting up boundaries and not following my natural instincts to reach out and help others. I genuinely pray that this does not fundamentally change me, but I have to now learn and accept that it’s okay to take care of ME and MY FAMILY and not carry the burden of the world and what I might have been able to do to help them if I had just extended a hand of support to them. I don’t think I have been wrong to live my life that way. I am just coming to accept that God is firmly reminding me the need to rest and restore and the dire price I am paying for not getting this lesson firmly and fast enough. Mentally, I’m in a really good place right now. Physically, I am anything but, and I have to remember my first ministry is to these precious children God blessed me to mother and this family that could not function without me.

Sunday, September 2, 2012

Grief denied

I am not doing well. I want to be, but I am not.

The effort to remove the nanny that was not safe for our family has taken all of my focus and energy since right after Micah died. Dealing with the aftermath she created has taken even more time. She opted to revert to acting like trash when she was fired, complete with false claims to the state that we have had to defend ourselves from. The state was understanding and has closed the case in record time (2.5 weeks). The worker kept telling me to please not stress. However, only someone who has never had to undergo this nonsense would think it is even possible to not stress under the circumstances.

When I'm not stressed or angry, and I am angry a LOT right now, I almost have to stop and chuckle. II has long said I am my own worst critic. This nanny lived with us for a year and saw me at my most vunerable and worst. Yet, all she had to call the state with was blatant lies. All the things I convict myself for as poor parenting choices, either she didn't seem them as bad parenting or the state didn't see them as worthy of writing down.

I yell. I yell a lot. Sometimes I get so overwhelmed, I tell the children to leave the room so that they don't have to be subjected to the primitive yolps I let out in frustration, even. I have a tendency to monologue at my kids. I try REALLY hard to not, but sometimes I do so anyway. I get frustrated when kids don't listen to me and I overreact. I overreact enough that I frequently have to apologize for overreacting, in fact.

My worst parenting was after I caught II. I wasn't abusive of the kids and technically wasn't neglectful because II was there to care for them. However, I just checked out. For six months, breathing was more than I could handle of life most days. I frequently would be sitting in the living room and simply walk out and go to bed because the chaos of normal life with the kids would overwhelm me so much. Sweet A was so worried about me through that time. I think II was worried about me too. The grief process of that betrayal knocked me off my feet and out of the game for awhile.

This time, the stress of the betrayal of a friend and the removal of this nanny has knocked me down. I haven't checked out. I'm still functioning in every way the kids need me to function. What I am not doing is grieving Micah's death well. It's there. It's buried deep inside. I just don't feel safe to unpackage it and feel the emotions I know will overwhelm me. I can only hope that I can control how I have compartmentalized this so that it doesn't shut me down and I can continue to care for the children until I am safe to bring it out.

Next Wednesday, six of my children go to public school. This change in paradigm is so huge that it threatens to take my breath away. It is not scary as it was the last time I attempted this. Four of my children were in public school this spring with success. A has been in school for 2.5 years now and has thrived. He did most of last year in a virtual academy simply to avoid the ghetto school he was districted for, but he was still not involving me in his education. This year, I add two more children to the school goers.

The only children who will not be in public school is C, who has Asperger's Syndrome, severe Dyslexia, apraxia, Auditory Processing Disorder and an extremely high IQ. This twice gifted child will never fully integrate into a public school environment. I fully expect I will continue to homeschool him until he enters college. The other child still at home is J, who at three is too young to enter public school at this point. I was going to homeschool Ch and L until Micah died and I realized it was just too much for me now.

Given that I have made the leap and put L into kindergarten, I expect once J is old enough, he too will simply enter kindergarten instead of homeschooling. Some of me is sad that these last two babies won't get the same foundations the older kids did. However, life is simply different now than it was back then. I cannot be the mother to these two little caboose cars that I was to the gaggle that came before them. I am not that person anymore.

I need to be safe to grieve. I need to return to work. I need to finish my education and start a career path. I need to be here for the emotional needs of my children. None of those things allow me to be the mother I want to be and continue to homeschool them. I am sad at that change but at the same time I have some excitement as well.

Mostly, I am hoping that I can continue to fucntion until they are all in school so that I can finally be safe to unpack my grief and face it before it takes me down.

Tuesday, August 28, 2012

Stress reduction

I have been diagnosed with Psoriasis. In the most simple explanation, it is a skin condition that is an autoimmune/allergic response to stress. Nothing more significant than STRESS. I don't understand how my primary doctor missed that it was not eczema this spring but had developed into full-blown psoriasis. What I do know is that I have been absolutely miserabale from this since last fall. I had eczema from stress or allergens for the year prior but this stuff developed last fall and never got any better.

Sadly, Micah was only one of my two insane stressors. The other was my own tendency to want to help people. That led me to offering our home as a sanctuary for a good friend, a single mother fleeing a bad marriage with three children in tow. Of couse, two of her children were autistic, one as severely so as Micah, and the third child was a severely neglected baby that my friend wanted nothing to do with. She came into our home under the agreement she would do childcare and housekeeping in exchange for free housing, and proceeded to sit down and do nothing but expect me to parent for her for the first two months.

I should have run at that point. However, she eventually learned how to assist with Micah's needs, which was golden, and I feel very responsible for her children once I had brought them into my home. It felt monstorous to turn my back on three children I knew would not be safe and cared for if I asked this friend to leave my home. Yet, the stress of parenting her three children on top of my chlidren, the stress of constantly trying to convince her that she really *did* have to do something other than enjoy the advantages of living in my home was a nightmare.

When Micah died, this friend had a bizarre and sudden personality change. She became unpredictable and unsafe. We attempted to direct her towards housekeeping so that she would still earn her housing and her children would be safe. However, she felt that meant she would perform approximately 45 minutes of work on the kitchen three to four days per week only. This too was unacceptable. Her behaviors continued to deteriorate and my stress went through the roof.

Ultimately, we came to the conclusion that we could not sacrifice my heart and soul to attempt to save someone else's children from their own parent, and that our children desperately needed me to devote what was being sucked up by this friend to actually support OUR children. Firing and removing the stress from our home became a month long stressor worse than losing Micah was.

The nanny opted to fall into the company of a trashy boyfriend and decided that acting trashy herself was the optima answer to the conflict. Multiple attempts to mitigate the behaviors and try to part company still friends had to ultimately abandoned for the option of removing someone who was behaving paranoid and bizarre and nothing like the friend I had known for several years.

All of my research indicates there are only three categories of events that cause sudden personality changes in adults. The first are brain injuries. These include head trauma, strokes, tumors, brain infections. We know this category is not the plausible explanation for what occurred to our family. The second category is severe mental health issues. We knew there were underlying mental health struggles and certainly mental health issues is a possible explanation. However, having observed this person in my home for a year and seen the struggles with mental health cycle throughout that year, I can honestly say this event was different. It had a sudden onset which began the week Micah was dying and dramatically escalated from that point forward so that I have been unable to even THINK about my grief process since Micah's death due to this situation. The third category of events is drug usage. Hmm....this is in an interesting category. Certainly, the new trashy boyfriend was a ready supply, and the behaviors do seem consistent.

While I would love to have closure and understanding of what actually happened to my friend, the reality is that it's not important. The Psoraisis and heart palapatations the lies, and the deliberate attempts to cause harm to my family are enough to know that this person is not safe for my family and cannot be permitted to EVER be near my children again. This is also exactly what the police officer she called in finally bothering to remove the last of her possessions informed her when she thought she would find a sympathetic ear--she was to get her stuff without speaking to anyone and to never contact us again.

I haven't had a friend betray me since middle school, and that friend long since apologized for being a typical, lost teenager. This friend was much more malicious and it is my undestanding from mutual friends that she continues to be malicious and dishonest. I am grateful that most of my friends know me and know when something sounds extremely inconsistent to them. We will work to heal the other ramifications of this former friend and nanny's choices and behaviors with our family as well.

What this has taught me is that as much as I strive so desperately to behave in a truly Anabaptist fashion and with the outlook of Anne Frank, ultimately Anne Frank was killed and most Anabaptists don't actually engage in the outside world. As much as I constantly want to help those I love when they need a helping hand, I will never, ever attempt to help someone so intimately and by bringing them into my house again. My home needs to be sacrosanct for my children. They have lost too much and losing a beloved nanny and their best friends in this experience was more loss than they should have had to endure. I cannot make other adults choose to be mature and loving adults, thus I cannot offer my home as sanctuary for anyone beyond the children it is meant to be the sanctuary for in the first place.

When we did the morally right act of contacting the father of the children and providing him with information he will need to protect his children, if he is willing to step up and do so, he said one thing that made me cry. He said my friend must have loved Micah very much for her to have fallen THIS far in his death. This man who was not a kind man to this friend, who has been a marginal, but at least safer than where she is and what she is doing now, parent hit this with such clarity it was shocking. Maybe this friend's underlying mental health struggles predisposed her to fall this way. Maybe it was bound to happen regardless. However, this man is right, she was devoted to my son as much as I was in that final year. She loved Micah very much, and whatever has happened to her since his death, I do believe it is the result of her insistance that she wants to run from the grief and deny that my son mattered in her life or the lives of her children. Whether she has had a total mental breakdown, or whether she has turned to her boyfriend's endless supply of narcotic pain killers and muscle relaxers, she is trying to run and deny the grief that overwhelmed her.

In the process, she nearly killed me as well. The stress of trying to help a friend not fall down, and then trying to get the ropes removed as fast as you can before you fall in and drown with that friend, has been insane. All I wanted to do was learn to live again without my son. TODAY, I can finally close that chapter in our lives that was distracting us and causing my body to stop functioning on me. NOW, we can go back to focusing on the grief and new normalicy from losing Micah.

Wednesday, August 22, 2012

Updates

So much as happened since I last wrote. Life is so overwhelming that journaling is the last thing I've been able to think about right now. The children are stabilizing and preparing to go to school. It is a great relief for me, as monitoring their daily needs has been exhausting some day.

I am looking foward to the fall where I will have one homeschooling and one preschooler. Since we have been returned to a budget of absolutely no extras now, it would be nice if my RN license would be issued so I could start looking for a part-time job. However, even without that, the fall is going to be an interesting time for me. I will have the opportunity to shower attention on my preschooler in ways I haven't done since the first one. I will have the chance to do consistent field trips with my homeschooler that I had to stop years ago because of the chaos of so many children. I'm letting go of the burden and the stress of the child still not 100% up to grade level but nearly there. I'm turning his ESL issues over to the school system. I've had several positive conversations with one of the Special Education teachers and the Special Education department about this son and I am confident they will carry him forward to finish resolving his struggles for me. I will only be carrying the responsibility for the profoundly dysleixic child now. Frankly if he were not Apraxic, Asperger, and extremely high IQ I would turn him over to the school system as well. I think since it will just be him finally, I can give him the attention he needs. I know he would shut down in his grief if I tried to send him to school, though the school system insists they could take on his challenges if I wanted to give him to them. I think they are idealistic but have never met an enigma like this child before, honestly.

We fired our nanny in the last month as well. She had been a personal friend who needed a helping hand in her life. We bartered free housing (and the safety net and resources of our family so that she was not a struggling single mother) in exchange for housekeeping and childcare. She struggled mightily and was often inconsistent in her working, but we continued to try to work with her because she could handle Micah and because we wanted to continue to be the safety net for her children. In the end, she completed stuffed her grief into a dark place inside of her. She forbad all mention of Micah's name in her precense. Grief denied will eat you up inside. When you had pre-existing struggles and you do that, she became a sad practical example to the children of why I insist they face their grief and process even what hurts them. The nanny flaked out and choose to run away from her grief. Even the her of three months ago would not recognize where she has gone now. We had to choose to try to continue to support her, at the cost of my health and well being, or set her loose to sink or swim on her own. I am distressed that I lost a friend. I am saddened that her children have been left to be under the instability her grief has created. However, I had to put my family first. I could not attempt to rescue her and her children (and you really cannot rescue a grown adult against their wishes) or care for my own family. I chose my children over her family. Much as that hurt, it was the only decision that could be made.

The only complication not having a nanny will create is up to two mornings a week when I hope to be coming off nightshift and II has to get to work. He can get the five early bus riders up and off to school. However, he cannot stay at home until I get home. The homeschooler is slightly too young to be responsible for getting a kindergartener off to school, even if I pay him. He may or may not be old enough to babysit a preschooler for a short period of time. There is up to a two hour gap in coverage for the youngest children, which includes getting the Kindergartener off to school. There is a stay at home mother of two preschoolers who lives next door. My plan is to speak to her and see if I can pay her for up to two hours, two mornings per week. II could take all three children to her house. The homeschooler could walk the kindergartner back across the yards to the bus stop and then come into our house to start his schooling, and the preschooler could stay with her until I am home for certain. It would be before she might be wanting to run errands or field trips for her own day, and I know her family rises very early. They go to bed at 6pm and I often hear them up and playing outside by 7am. So, it won't involve her having to get up early to accomplish.

This family is a young, Christian family that is working on adopting special needs children. So, I am hopeful that she will recognize our shared vision and be willing to earn some pocket change. I'm also hopeful she might be willing to earn more than pocket change in the timeframe I will have to work full-time hours to do my training at any job I do secure. I haven't lost my faith in other Christians on a personal level yet. In fact, in personal relationships, Christians have often shown me that those I seek out can and are more than willing to walk the faith they claim to hold. So, I shall see if this family is willing to be of assistance. If not, I will search for a caregiver elsewhere. If she is willing, then that would be the best scenario for my children. I won't have other childcare needs again until next summer when I start preceptorships in my BSN program. My children will be home for the summer then and I can hire my teenagers to assist me in that need. Next fall, we will either be more integrated locally, or we will return to where we came from and our support system there is strong.

We have a church we are going to try. We intended to send II to try it this last Sunday. However, after we moved the nanny's belongings out of the wing of the house she occupied, we decided to do a major shift in the room situation. Thus, we spent the weekend moving all three girs up a spiral staircase into the rooms the nanny once occupied. We then moved the second teenager out of the closet-size room that once belonged to Micah and into the large room that belonged to the younger two girls. The room that was formally the oldest girl's room, and is across from the dining room, is in the process of being converted into the library, and the room that was part of the library (because it was a small room and my books spilled into a back hallway from there) will become the last homeschooler's school room. The homeschooler currently has a hidden reading nook behind the spilled out library. I will be converting his little spot under the spiral staircase into a more formalized and customized nook for him.

Also, since the nanny's two Autism spectrum boys are gone along with their highly destructive ways, I am returning many of the toys into the preschooler/kindergarten playroom that I feared they were destroying before. Without her climbing, curious baby and those boys who needed blocked from my older children's possessions, there is no longer any need for baby gates in the house. Well, almost. I believe the Landlord had dogs with very bad potty manners. My normally well behaved puppy has targetted the room that belonged to E and is now the library with a never ending stream of very bad doggy behavior in there. So, we put up the last baby gate in the doorway. We didn't want a door to the library, but we don't want doggy to have any more chances to damage that carpet or be encouraged in poor behaviors. So, the baby gate stays closed to keep the puppy out of the library. There remains an unlocked plywood gate between the loft playroom and the boys' bedrooms for the same reason. Otherwise, my house is finally open and navigable.

I am overwhelmed with the size and functionability of this house now that it is just our own family. II assures me it is only 4000 square feet, but it feels more like 5000 to me. I have chalenged him to measure the rooms and confirm who is correct. J is hammering that he wants to have Micah's old tiny bedroom. It is very tiny, but J is only three and only has a dresser, a rocking chair, and a toddler bed. It is the empty room in the wing with all of the "big boys" and J wants to be with his brothers. However, it is on a side of the house that is heated by the coal stove and is quite cold at night in the winter. We are trying to convince J to stay next to us, in a room with baseboard heating, through this winter. We're not certain we are going to win the argument. We may instead be stuck stocking up on footed fleece sleepers for todder boy.

We must decide in the next year if we are going to stay here in New England, or return home to the school, and whether II will take the deferrment he holds for medical school or not. Again and again, II and I cannot decide where we stand on this. This community opened their arms to our family as complete strangers. The neighbors have been wonderful. The school district has been wonderful. The schools have been terrific for taking my homeschooled children under their wings and recognizig their talents instead of hearing "eduational neglect" when they heard homeschooling. II's work has been like family to us from the get-go. He has never worked for a more family friendly company, down to the fact that when Micah nearly died in January they purchased him a plane ticket and sent him home to his son immediately when they learned what was going on. They also chastized him for attempting to work under those circumstances. If II doesn't go to medical school, it mght be foolish to attempt another company with our large, special needs family in tow. There was a famous, nasty exchange between II and his (supposedly observant Catholic) boss when we first adopted Micah. The man informed II that II choose to adopt a terminal child. It wasn't the company's problem and they would NOT be allowing him to miss work for anything related to that terminal child's care. That was when we learned how to navigate and file FMLA paperwork, since the man's statement was illegal and insensitive.

However, we're uncertain if the Landlord will be willing to sell this farm to us. When we first rented, he indicated he was interested. He and his wife still appear overly attached to this farm. It is a beautiful farm, there is no question about that. Yet, he has a highly specialised career and the closest place he can work in his career is five hours from this place now. His job was closed three years ago locally. He commuted down into another state for the first two years and last year had to move his family down there since they could not do the commute any longer. Even still, his career makes a lot of money which affords him the ability to potentially cover this mortgage and housing where he currently resides. He is also in his 50s and we fear may have the intention of retiring and returning to this farm. His entire family lives down where he now works. Yet, he refused to allow the local farmer to cut the hay on this property for fear the tractors would put ruts in 9 acres of fields he had rolled to smooth them out for six years. I've never heard of anyone rolling an entire farm of acrage to make it smooth like a country club and thus our fear that they won't sell to us....or just as bad insist upon selling at what they paid for the property which is 1/3 greater than current market value of the place, and thus shut us out from being capable of obtaining a mortgage.

I still feel so much in transition. What life was like after Micah died was something I never let myself consider. So many days, living feels surreal now. Just identifying a church we feel comfortable trying, and realizing that we are now free to test a church again because they cannot reject us over Micah, is overwhelming. Working with helping the children process and grief and move into school is new territory for me. Setting up to go back to work, necessary to help relieve some of the tension in our budget but also to build towards my career goals and to give me an outlet for me is a place I never imagined I would be standing in again. It's impossible to know where we will be in a year, because it's impossible for me to see the future ahead of me anymore. My reality now seems to be in finding how to see that future and see it without Micah in it now.

Thursday, August 2, 2012

Three weeks

Grief is driving three children to individual therapy when all you really want to do is crawl in a cave and hide.

It's staying pleasant when one child snarls at you, even if what you want to say is 'get over yourself, you aren't the only one hurting.' Instead, you stay calm and upbeat when you tell the snarler that sure he can have food....once you get home again.

It's staying calm but firm when a second child wails at you for daring to tell said wailer that they must find your address book when they get home. What you want to say is, "stop lying through your teeth, I saw it in your room last week and half the people here this weekend complained about your lying all weekend so just knock the crap off and find the stuff you stole from me." Instead, you simply firmly state that you are not going to engage said child in an argument but you insist that you have your address book back today. Okay, you do make wailer return and try again when they slam the car door with so much anger and venom that it jars your teeth but even then you don't let yourself snap.

It's letting your heart break when the third child sits hidden in a shell and will not crawl out and engage you. This one of your most devoted and attached children, who fought through so much to attach. What you want to say is, "Please, please, please find your strength, baby. I cannot face losing your heart in this grief if you cannot, and I fear you will not find yourself again if you let yourself get lost." Instead, you touch this child. You talk as if this child is responding. You show love and remind this child that family and attachments are still intact, even when hearts are breaking.

After an exhausting day of shuttling children (the children who had individual therapy yesterday blessedly see their therapists at the house), all you really want to do is hide and cry. Instead, you sit on the couch and engage these children as they periodically walk through the living room to touch base with you. You force yourself to eat something, anything, because you remember that you have absolutely no patience for their fighting if you don't. You drink, not because you remember you are actually thirsty but because you've realized you will be suddenly thirsty an hour before bed and then you will be up peeing all night and lose what little hope you have of sleeping for yet another night.

You engage these children. You mother the living. You remind yourself that you don't have time or space to shut down, their needs are far too great for that. You comfort yourself with the knowledge that after dinner, you will grant them permission to play the Wii which they will do the entire time you escape to punish your body in ways you cannot punish your heart and soul.

There is no time to get depressed. There is simply too much which must be done every day and every hour. Today is three weeks. It already feels like a lifetime.

We found Mario, the missing piece to the Mario Brothers chess set. We knew all along that Micah HAD to have hidden Mario. He was obssessed with Mickey Mouse and Mario. I used to have to stop him from carrying Mario around like his own personal collectible. We found him hidden under the diapers for the nanny's toddler. It was a very Micah style hiding place. I'm not sure if I'm happy to have found him or sad that I completed Micah's last game of hide and seak.