Thursday, April 10, 2014

Small steps forward, backward, sometimes sideways

Nothing life shattering is happening now. Yet, small things are shifting around here. Most of the kids are getting stable finally (and I cannot stress how important that change is). A and E are still struggling in school. However, E was accepted into a Magnet school for fine arts for this fall--conditional to her bringing her GPA back up, and it has been the motivation she has needed to push through her mental health challenges to get back to somewhat steady ground. We know what A's struggle is, we just aren't having any luck getting him fully back to thriving. He is the most tech unsavy teenager I have ever seen. We moved him to a school that is extremely tech oriented (the children all use ipads for their textbooks are supposed to submit their assignments online. We're desperately trying to help him, as is the school and the soccer team. I think he's looking at repeating three classes in summer school. There just doesn't seem to be a way around that outcome. E will likely have to repeat her math class in summer school. Surprisingly, S is passing all but his math, which everyone expected and knew and he will simply repeat it next year.

The children have all restarted grief therapy through a local non-profit. It's wonderful for them, and it's helping everyone get adjusted so much better than I was getting it as I spun my wheels and did it on my own. It was amazing. Whey they oriented the children to the center, they each received a bag. Those bags were full of things like journals (or grief oriented coloring book for the littlest guy), tissues and other things to help them. They were also given a stuffed animal and a full sized, handmade quilt. Those blankets are beautiful and all of the children love them. They are supplied by Project Linus. Years ago, in another state and another lifetime, the girls and I did a Girl Scout service project providing blankets for Project Linus in our area. Never did I imagine that I would see Project Linus as something to minister to my own children.

E had a very bad month of March, probably the worst in both of our lives. There was a point that I thought we were going lose her, quite literally. She's had a full tune-up of her mental health status and a new therapist. Her other therapist seemed nice enough, and was making progress with her, but he seemed to fail to understand how traumatic this whole move was and did not understand the need to see her more frequently than once a month. It had a great deal to do with what led to the disaster last month, and I certainly don't blame him. However, the grief center gave me a recommendation for a therapist not only skilled in addressing grief issues in teens but specialized in ASD children. In just three sessions, she has been FANTASTIC for E. Normally it takes a lot longer to get a therapist to understand who E is and how to work with her. This one really knows the Asperger's challenge well. She truly believes we can get E stabilized and back to every other week sessions by fall. I truly hope that is the case. It hurts me to see E hurting. But, since her tune-up and starting with this new therapist, I have tremendous hope for her getting stable and happy again. I was stunned that the Magnet school gave her a conditional acceptance despite her tanking her GPA this spring. They told her she has until August to get into the required GPA range and if she cannot accomplish that, then they will put her admission on hold until she does rather than reject her. This will be fabulous for her, to allow her to express her creativity and focus on positive and healthy avenues of creativity.

I interviewed for a job today. It was mostly a let-down simply because it appeared to be an HR screening interview and generic. However, she was going to forward my resume to the hiring manager, and that is where my hope lies that I will garner the attention and eventually the job. I've applied for quite a few jobs. This is the only one that has responded. It also happens to be my dream job, so I'm okay with that. I am waiting on an admission committee somewhere to agree that the future I envision for myself is one they believe I am capable of as well. Two of them have told me I can expect to hear in June. I'm impatient and want to hear today, but I continue to wait.

Yesterday, I started another journey in this reclamation process of my life. I started a journey on aggressively and proactively conquering my health struggles. By summer, I will have taken drastic measures that I believe will help see me through many more years with my family. It's an ironic but medically necessary journey I am entering, and one I hope I will not regret when I get to the other side.

Today, after years of avoidance and research in the dark of night, I made a leap on my spiritual journey as well. I am ready to explore spirituality without feeling like I have PTSD myself, without rejecting a creator because of the creations. It's not something I'm ready to discuss, and I don't know where it will lead. But, the sheer fact that I am speaking to a religious authority of any variety is HUGE for me at this point in my life.

Little by little we are putting our lives back together. This time, we will not be uprooted again. This time we will restore and this home will be a haven for healing for this family. It has been a stormy spring, and I couldn't have worked through this even if I had the option. However, as the family is recovering, we will find our footing again and find our way back to thriving again.

Friday, April 4, 2014

The dream job

If we had stayed in New England, I was reaching a point where I was going to have to find a new job. It wasn't just that my manager was horrid, and she was truly horrid. It was that as much as I liked working with adult oncology patients, my heart is still in pediatric care. I am a pediatric nurse and, if all of my dreams go as planned, I will one day be a pediatric nurse practitioner. That's who I am. That's how I got into adopting medical needs children in the first place. I was born a pediatric nurse. It's basically the one place where my mothering instincts that cause me to mother hen everyone around me becomes acceptable and beneficial.

So, I've said for years that my dream job is to work Pediatric Oncology and Hematology, with the ability to have a focus on palliative and hospice care worked into that population. In New England, the closest children's hospital was nearly 1.5 hours away, but if I was ever going to get back to pediatric practice, it was going to become necessary. Here in the south, the nearest pediatric hospital is only slightly closer, but the winters are more mild. So, I figured down the road, when I was ready to stop denying that I was born to be a pediatric nurse, I would look that direction for a job, in the hopes that if I got my foot in the door somewhere, then eventually I could work my way into the Oncology/Hematology area where I really want to be.

It took several months to get my licensure transferred to my new state. I had this identical problem when I moved to New England and I now believe the slowdown is the state that I took my board exams in. Only about half of the US states have a compact agreement for nurses, in all other states, you have to apply for what is called licensure by endorsement. In each state that I have had to do that, I am required to have a verification from the state I was most recently (and actively) licensed in sent to the new state. However, I am forever required to also have a form from the state where I took my board exams. Once my licensure was issued for this new state, several issues came up with the children in March and I was unable to work at looking for a job until a week ago.

Despite working a very normal looking, traditional nursing position for a year, most of my background is very non-traditional. I'm skilled and I am terrific at what I do. However, if you are looking for a job where I clocked in, worked my shift, and then took my paycheck home, you simply aren't going to find that. Consequently, I have not heard back yet from the local positions that I applied for, and I applied for every per diem and float pool position that any of the local hospitals have advertised. Two days ago, on a lark, I went to the children's hospital to look at what positions they had open right now.

They had a per diem night shift position on the peds floor. I thought about it for a minute and decided that if working night shift so I don't have to accommodate childcare, I can totally to the commute, so I applied. Then I happened to look at their list again. They have a per diem position in their Pediatric Oncology/Hematology infusion center they are looking for a nurse to hire. This....this is my DREAM JOB. This is the job I thought I would have to work my wait to get to, the job that was outside of my reach because I can only work per diem while I'm in grad school. And, I fit every qualification they want....except I am not chemo certified.

I am willing to get chemo certified, and I thought that perhaps my background and strengths in infusions, in central lines, in pediatric hematology and in hospice care would boast my chances over that missing chemo certification. I figured if I got past the screening, I would explain to them that I was supposed to get that certification in December but I knew the ethical thing was to not hold off on giving my resignation and letting my employer pay for that training and then quit two weeks later. I decided the ethical response was to give my manager a chance to put someone else into that slot so they could do the work after I left. So, I gave up being chemo certified before moving to do the right thing. I didn't honestly think I would get anywhere with this application. At most, I figured it would get my name to this department and they would start seeing my name repeatedly and with time they would eventually talk to me and see how passionate I am about this specialty.

I cannot describe the panic and the excitement to open my email 36 hours later and find an email asking me to call the nursing recruiter and set up a job interview. It's not a job yet. I still might not get this job. However, they know I am not chemo certified and they still want to interview me, so they must be willing to at least consider paying to get a new hire certified. This's THE job I've wanted. It's THE job of my dreams, the one I wanted more than anything, the one that is my long-term career goal. If I could convince them that I am perfect for this job, I could work it for the years I am in graduate school, and then I would be known and established to try to get a nurse practitioner job with them when I was done. It feels too good to be true!

Saturday, March 22, 2014

The not 12th birthday

He had the longest fingers. I remember those fingers. I remember them splayed out against my hand when I would hold onto him. I used to think in a different life he would have been a piano player. They seemed almost unnaturally long, slender....sometimes lethal as well. When we picked him up, his foster mother had his hair in a high and tight military cut. It was horrid. The child had a misshapen head, looked like he had at least a small amount of microcephaly and ears that were too low, too far back and too odd. He looked like an "FLK;" funny looking kid, a medical slang for a kid who looks like something is very off genetically but you can't put your finger on what. So, I kept his hair longer, in a pixie cut. The longer hair hid the FLK look, and it bought him much grace for his struggles from others because he looked much younger and more innocent than when you cut his hair short instead.[p] Last night, I though I heard him holler for me. II tells me that one of the children threw up at 1:30 am, and thus he heralded in this not birthday with full blown Micah issues. It reminded me that when Micah died, a dear friend came for his funeral and her special needs son began displaying behaviors that were completely abnormal for her, including vomiting all over my house several times. But, they were so eerily normal for Micah. Sometimes, when L opens her mouth, Micah comes out in full force. When J opens his mouth, Micah comes out a lot. It reminds me that they will carry him in their very souls forever.[p] They told us the second year was the hardest. I heard them, but I couldn't comprehend it. For me, the tears came in this second year. Since the first of the year, the tears that only came in short periods of time, and only far away from the children have become an ever present reminder that my heart will forever be broken. It feels like a relief to be able to cry now. When we hit March, they started building. And as the other children have fall apart and faced struggles that felt insurmountable, often in direct relation to their own grieving, it has become a heavy burden on this entire family. I know that we are in a safe place to heal, to rebuild our lives. I also know we have to go through these struggles and pain to get to a better place.[p] Thursday night, we did intake for a local grief support organization. They were incredible, geared towards children who have lost someone they love and their caregivers, all of their services are free. Several children have been set up in group grief therapy sessions and several will be receiving individual grief counseling. They have no male therapists, so A has been referred to a male therapist who works with teens and does grief support therapy. I want a therapist to check in with him and determine does he need some more intense grief therapy work, or does he just need a check-in. For E, who has made it clear that she continues to drown and nearly lose herself in her grief, we have a referral to a therapist who not only does grief support but works with children on the spectrum. In some ways, it feels like we're starting over at the very beginning of our grief. Losing II's job, the farm and their community they had built in New England has been so very hard for all of them. But, we'll make it through this.[p] I imagine that I would have bought him an adaptive three wheeler this birthday. By this point, we would have accepted he was never going to be capable of a two wheeler and would have gotten him something for a big kid that would allow him to continue to keep pace and interact with "his kids." I imagine we would have had balloons and laughed today. He liked keeping up with "his kids" so very much. He had no idea what to do with them, but he definitely wanted to keep up with them anyway.[p] Happy Birthday, Micah-man. I wish so dearly that you could be here to celebrate. We'll send red balloons to you in heaven instead. I hope you see them and I hope you love them. It's all we really have left now.

Saturday, February 15, 2014


It was Valentine's Day again this year. It seems to come every year. Some years, I'm good with this day coming. Others have been notoriously bad. I'm grateful that the dark years when I wanted to burn the calendar are behind me. I'm grateful that I no longer struggle to have a moment without children on me...although, a rather cute five year old did try to hide my bedroom closet for our picnic but got so excited he started clapping and gave his position away.

It started our second year that we had babies, toddlers, children who needed us to be home. So, rather than going out and fighting the crowds, we started staying home and having a fancy picnic on china instead. This year, II actually planned something else and I realized I have come to cherish these quiet picnics at home. My children helped me setup a card table in my bedroom. By the time I got there, I found two of my teenagers trying to remember how to set all of the extra dishes and silverware of fine china. The two least likely to get along on a daily basis were the two partnered to give us a gift of love as they poured over it and helped each other remember how to set a fancy place setting.

We've once again been through hell this last year. It wasn't supposed to be that way. It feels like that has been part of the struggle to adapt this time, that none of this was our choices but someone else's. II and I have both had contact with some people at his last workplace and pushing him to resign started a downward spiral that they aren't even close to recovering from there. Nearly half of the management have jumped ship after what was done to II, undoubtably grasping that if it could be done to him then it could be done to any of them.

For all of the transitions and stress and ripped open grief, there are good things about this new life here. This job is perfect for II in ways the last one never could have been, nor would have been. It as if someone looked at his strengths and wrote a job description just for him. He loves what he does, but this position was a promotion, a chance to utilize his thinking skills and less of his hand's on management.

We're back south and despite the crazy weather that seems to have followed us back, there were things I had forgotten I even missed, or I simply couldn't articulate. What I missed the very most about where we were was the sun. In this house, my chair is directly next to a huge patio door and the afternoon sun streams across me as I study. I may regret that when summer comes. More likely, I'll have to invest in some decent curtains by then so I don't burn to a crisp in that summer sun. But, the sudden infusion of sun into my dreary winter has been healing for me. I see the same effect on the children, though they don't grasp it is the sun that has restored them.

The transition to this new school district has been bumpy. Almost all of the kids made some mistakes in that transition that they are now battling to correct. However, they are slowly and steadily getting there, slowly making friends and feeling like they fit in again. And they are finding so much more for them here as they do settle.

This house is perfect for this family. It's as large as the last one, but it's supremely designed to be simply perfect for this family. I have given away all of the boxes, have begun to transform this house to mine. I have no intention of ever moving again. I made that clear when I moved here, and I am absolutely set on that decision now that I'm actually here.

A strange timing on my schoolwork required I reach out and find someone in the local medical community as a mentor for a class. Consequently, I stumbled upon a professional community that is warm and welcoming to me. I have embarked upon a research project outside of the classroom, have started to make connections with the Nurse Practitioners here, and have found a home. Never did I imagine I would do that so quickly and effective. I volunteer at a low income clinic once a week now, and I am forging fast friendships with those I work with. I also get to work with training nursing students and am realizing that I love doing that work as much as I love working with actual patients. I love that though I am trying to not have to work more hours than I can balance by taking a permanent position somewhere, I am wanted and welcomed at this clinic where I can use my skills and forge those friendships.

In a short six weeks, this place feels like home to all of us. We are connections. We are establishing community. We are happy and thriving. This year, more than the chance to talk about love, I am realizing that we are home. After all we've endured, all of the grief, the loses, the changes the moves, all I can think is please God let this finally be IT. Today we have calm, stability, security. I am ready to simply abide and give my children a sanctuary to finish their childhoods. I feel like we may have found it here in this southern city, close to family, close enough to reach out to old friends, and friendly enough that we are so quickly and so happily making new friends here.

Friday, January 17, 2014

Building again

I have a permanent injury to my left ankle. When I was 13, I stepped between a sidewalk and a road and bent that foot inward until the foot actually touched the leg for a moment. A normal parent would have taken their child to a doctor. A normal parent would have been concerned that the ankle was broken. I didn't have normal parents. I had a shitty mother and a co-dependent father who says he trusted her to be a good mother and thus never questioned her judgment. Honestly, there are many days that I think this was merely his excuse to absolve himself of his own culpability in the horrific childhood I endured.

The end result was that I did not see a doctor for my ankle until I was over the age of 30. My mother, who thought because she was a medical student meant she knew everything about all areas of medicine, declared it was not broken. I was ordered to stop crying or be spanked severely to justify my crying. She slapped an ace bandage on my ankle and told me to walk. After four days of my inability to walk, she did finally break down and buy a pair of crutches for me to use. However, three weeks after the injury she declared there was no reason for me to need those anymore and took them away from me.

I hobbled for months, slowly rebuilding. The next year when I attempted to run track, I discovered I was quite fast in speed, but after every track practice, that ankle felt like it was on fire. I suspected there was something permanently wrong, as she did manage to admit that the rock hard knot that appeared at my calf muscle immediately after the injury was likely my tendon. Since I could rotate and weight bear on the foot, obviously it wasn't a severe injury though.

I quickly found an excuse to get out of track, despite the familial expectation that EVERY child of my father's was supposed to run track. I took an afterschool babysitting job that conflicted with track practice. Since the family was a member of our church, my father would not interfere and tell me no. This would appear as if he were a poor minister. It saved me from the torture and after that point I learned what my ankle was capable of, or not capable of forward.

When I was 30, I went to an Orthopedic surgeon, a friend of II's. I explained the history of my ankle injury to him and asked him what my options were. He estimated that I tore 80% of the tendon that attaches my calf to my ankle joint. Tendons do not repair themselves. The torn tendon is still there, balled up next to my calf and atropied. He could feel it, he could see it even. He stated unequivicably that I needed surgery to repair my ankle when I injured it, that it was entirely likely I broke bones in the ankle as well but they have since healed. At 13 and immediately after the injury, it would have been an easier surgery and a quicker recovery process. However, at 30, there would be nothing easy about the repair job. In fact, he would have to cut into my heel, reach up all the way to the calf, stretch the tendon back down and attach it, and since it 20ish years, the likelihood that the tendon can be fully restored is low, so it would require synthetic materials or harvesting tendon from elsewhere less critical in my own body. He could do the surgery but it would be painful, would have a long recovery in which I would be unable to walk, and it would have limited success to attempt it. Instead, he recommended that I continue to baby that ankle. Since I can walk on the 20% tendon that exists, I should continue to wear braces and to always listen to that burning sensation and never stress the ankle. If I ever tear that tendon even a little bit again, I will have no choice but to have the surgery to repair the injury. Given the lack of medical care I had at 13, I am in a position where my body has compensated and it is functional the way it is. So, I opted to maintain status quo and take care of that ankle to prevent further injury.

I do not run. I have never run since that point. I don't job either. I walk. I can power walk if and only if I have built up to that activity. I can hike. I have a brace for my ankle. I have a deformity on that ankle where you can tell connective tissue is gone. The ankle sinks in. When I was 19, I distracted from this deformity by putting a tattoo on the sight--great for empowerment but significantly worse on the pain factor than even an ordinary ankle tattoo would be since it was needle directly on bone.

What I know about my ankle is that I cannot jump into exercise. I have to build slowly, strengthen the muscle to compensate, utilize my brace especially as I am building up ankle and calf strength. If I do not do this, and even as I am doing this, the ankle burns again. This is not a no pain/ no gain scenario. I cannot push through that pain. I have to slow down. I have to do lots of flexibility exercises. It takes a couple of weeks as I am restarting exercise to build this ankle back up.

When Micah was dying, I started walking. It built that ankle up and it did not bother me again. While I slacked off on the exercising after Micah died, I started a job where on the days I worked I averaged two to three miles of walking per day. This continued to strengthen my ankle so I didn't have to think about it anymore. Then, I quit my job first of December in preparation for this move and I wasn't walking there. It was too cold and snowy to walk in New England so I wasn't exercising outside of work either.

Today, I started walking again. This new neighborhood is a lovely place to live and it has terrific resources for walking. However, those paths are hilly. Having not exercised for six weeks, the burn came back quickly. So, I managed to walk 2/3 of a mile, with several stops to flex and rotate the ankle as I went. It's a slow start. It would be discouraging, especially since I was otherwise find with the exercise, including my breathing struggles. However, I know my ankle, and I have done this before. I will dig back out my brace. I will start doing strengthening exercises at home and at rest and I will start with less than a mile. I will build back up again and get back into exercising.

The chaos of the fall has died down finally. We are moved. We are stable. The children are slowly and steadily launching into their new schools, new lives and new normalcy. It is time to start working on my health and exercise as well. I love that this time I simply know to build back up and not give up. I know that it is important to take care of me and my health and not merely everyone else. I know that this will take time, but I cannot be discouraged. Instead, I can rejoice that despite the horrific injury done and the terrible harm done by a woman who called herself a mother, I can still walk and what I require is not pain management, not surgical restoration but physical therapy techniques that I am well familiar with and soon I will be walking strong again.

Friday, January 10, 2014

Healing moments

There was a lot of big emotions about all of the turmoil and change that this fall brought to our family. No one actually wanted to move, though all of the children understood that II's work situation made the move necessary. No one wanted to live without dad, but they also did not want to leave where they had been happy and healthy. They did not want to leave the memory of their brother, in the place he was the happiest of his entire life.

At the same time, New England was bad for my health. I don't mean a little bit bad, but really, really bad. I had resigned myself that I would be there to stay because that was where the children were happy. However, it was not a good situation for me. My psoriasis does better in warmer weather and with more sunlight. My thyroid condition causes me to be extremely cold intolerant, which means that my joints and bones hurt most of the northern winter. I could never get warm, and being cold meant I hurt all of the time. That was all before you consider that there was major cultural differences between New England and having lived in the southeast my entire life. I have moved more times than I can count, but I only visited that far north previously. There was much I missed about home, and much I still was not adjusted to in the north.

For me, moving back to the south was exciting and somewhat of a relief. For the children, it was frightening and met with trepidation. Most of them had lived the majority of their lives in the south, but they had found contentment in New England. I knew they would be find returning home, but they were not nearly so convinced of that reality.

We have been here less than a week, and my words are proving more true than these children ever imagined. The home their father found for us is perfect for them to have the rest of their childhoods here. The house is large, six bedrooms with a living room, playroom and a library, where we were able to set up a table for them. Half of that table is for puzzles, the other half for board games that require pauses in playtime. There are three bathrooms (and really we found that four in New England was just overkill and required more effort to clean). My one concern about this new house was that we did not find a house with land, but a large city lot in a subdivision. However, the subdivision is 30 years old and well established. The houses are well spaced with large lots and lots of trees. The roads are perfect for children to ride bikes, and the neighborhood is teeming with children for these children to explore and make friendships with.

The first day we stepped into this house, half of the children were apprehensive. Poor S hid in his closet for two hours until he felt safe and adjusted. We have now been here five days, and every single one of the children wake up every single morning and tell me how much they LOVE being here. They haven't even started school yet. They have just barely started to explore the neighborhood and meet the neighbors. Yet, they smile every day, rejoice at the sunlight that streams through their windows, and run with wild abandon in a yard that is as warm as summer weather averages where they just escaped.

I think we're going to be okay. It will be along road. They still have to conquer adjusting to school here. They have to learn to live in a new area, a small city in the south and not rural nor mega city, which is most of their experiences in the past. They have to learn to fit in, to simply have a life and to not have chaos rule their lives anymore. Every step we take is one more movement in their healing and recovery. We're getting there, and it warms my heart to see them thriving and happy so very soon after getting here.

Wednesday, January 8, 2014

Stepping forward

Life goes on, as the song says. New job, new location, new house, new chance to move forward with all of our lives.

On January 2, we packed up our lives and pulled out of New England. It was an adventure, of that there is no doubt. There were some wonderful things about living in New England. I was surprised at how very open and friendly the people were. I was surprised at how diverse some things were. Never did I find such variety in food choices so easily prior. Never did I find recycling so accessible. The schools truly partnered with us to work with the children. Our neighbors were truly neighbors. Growing up in the south, I always feared the small towns most of all. They were always so closed, so judgmental and out right mean to me. They had a façade of friendliness and kindness, but under that façade they were just mean bullies. That was not the dynamic I found in a northern small town. The people there were genuinely kind and interested in being neighborly to our family.

Yet, the things I am most grateful to leave is the ghost of Micah's absence, and the weather. I truly felt ready to whither up and die with the cold weather. While we traveled back south as a Polar Vortex did the same, we still managed to outrun the snow at some point.

When we left our home four years ago, our children left behind all that was stable in their lives. We needed that change to restore our marriage, and the foundation of their lives, though they didn't understand it. However, that move still hurts the children. We went from solid middle class with a full-time stay at home mother and homeschooling to inner city, abject poverty with two parents in school and scraping to barely make ends meet. From there, we went back to middle class, but we left our world behind and were completely submerged in death, dying and grief. As we unloaded the moving truck, every one of us shed some of that grief and pain. The children are back to solid middle class, a mother who is at home (though I am actually in school and will be seeking out per diem work as soon as my licensure is straightened out).

I sit in a house half unpacked and I marvel at where we have been and what we have before us now. Everything that II's last boss meant for evil has turned into a beautiful mosaic to this family now. I promised II when I got here with him, I was throwing away the moving boxes. I'm done being nomadic. I will work diligently to finish my own training so that we are never in a position to rely solely upon one income again. If I had held my degree already, we would not have needed to move this time. Yet, there was tremendous good for this family in moving this last time.

We have bought a house, though I swore when I left four years ago I never would again. This one is nearly my dream home. It lacks only a few minor things I always dreamed of having. It is a home I can grow old in, a home where I can provide healing and peace for these children. It is home...again...finally.