Ch-ch-ch-changes

I've started a number of new posts over the months and not finished any of them. So many little things.  So many big things. So many things that never seem to change have taken place. So many interruptions.

The moment the kids hear the sounds of me tapping away on the keyboard of this ancient laptop, they congregate -- needing more attention than they have asked for in days. I've tried to sneak off to update the blog, and I've tried to double-check on each person before I've started, but as all moms know there is no way to ensure that you can have a peaceful moment to hash out life on the keyboard.

We've had big changes here. My oldest has decided to go to school in a brick and mortar school. While we've always said we want the best possible education for the individual, its a little harder when the time came for one of my kids to take control of their education and future. So we've supported her in her change, and try to make it less of a culture shock. But the truth is that going from an education that is self-directed and takes place in the comfort of home to one in an institution will never be easy. Being told when you are allowed to think and when you can't, when you are allowed to eat, drink and use the bathroom instead of when your body says you should and the only steps you are allowed to take in order to come to the only correct answer is overwhelming. And she is overwhelmed.

And now, because with the fees and supplies involved in going to a free, public school, we can't afford to bring her home to continue learning at her own pace in an environment where the dress code is yoga casual. Its heartbreaking and we can only pray that she overcomes the shock and the immense anxiety and manages to swim instead of sink.

In other news, I continue to deal with my knees and back painfully falling apart, with arthritis now affecting more and more joints as time goes on. What started as an injury that should have been taken care of has turned into a giant mess of pain. Often with every joint, tendon and muscle from the waist down in agony. Days are spent gritting my teeth and hoping to survive. Nights are spent avoiding sleep that won't come and carefully arranging myself to reduce the amount of pressure on my knee. Even the sheet is too rough and painful to the joint.

I did finally get clearance for a Synvisc shot that many people claimed to have worked wonderfully for them. No one mentioned how incredibly painful the shot itself was -- I passed out. Nor did anyone mention that the side effects were actually quite horrible. But then again the literature claimed less than six percent of patients experiences any or all of them. I was in that small percentage of people who experienced all of the side effects and for longer than promised. If only my chances at the lottery were so good.

So these are the changes worth mentioning. I get up early to see my oldest for the 30 minutes it takes her to get around for school and out the door to the bus, followed by days of keeping my other two on track in their educations. Nights of work followed by late nights of restlessness as sleep evades me. I don't ever get ahead in any of these endeavors which just proves that the poor are lazy and good for nothing.

Self-pity

I admit it, I've been feeling unappreciated. Its one of the downsides of this life, or any I suppose. At home, I'm not as necessary, having taught my kids to be more self-sufficient. And I cannot tell you how much I rely on their abilities to cook, clean, care for the animals and keep the household running. All three of them are incredible people. This sufficiency is priceless and was and is worth all of the doubt and judgement that people expressed over my pushing the kids to learn from a very early age.

I rely on the kids so much. I need them here to do things that I just am unable to do now. And while I trust them and I trust their training and knowledge, I try not to take advantage of it. Its hard going from having a stay-at-home mom that was involved to having a working mom who is barely able to cope. I don't want them to feel like they have to take care of everything without a parent to help them.

So while I'm immensely proud of my children for stepping up when I work, I feel bad because I can't do it all.

This was one of those weeks. The kind that I struggle through the little challenges, and it seemed like there were so many of them. I did jobs that needed to be done but it was a struggle to do so. I felt like I supported everyone else in what they needed to do, but there wasn't a lot of support for me to draw upon. Its the nature of my position in both my personal and professional life.

And as I slogged through, the weekend looked no better. With my husband gone to take the oldest to summer camp, I've fought through the sleepless nights and exhausted days as the RP (responsible parent). And my second-born has done more than her share of the work to help me.

We should have celebrated Father's Day and our wedding anniversary today. The kids gave their dad his gift on Saturday morning before he left. I anticipated that my husband would be back tonight from his trip dropping the oldest off, but he decided to stay in Oregon another night instead. So beyond a couple of text messages our anniversary was overlooked.

So here I am, feeling a bit sorry that we missed our anniversary.  Feeling irritated that work didn't turn out the way I wanted this week and feeling exhausted.

There isn't a fix for it.  There is no vacation to escape. This is the day-to-day life of someone who is tired and overwhelmed.

Another failed night

Once again I've given up the pretense of sleeping. I don't know what sleep is anymore. I can't remember going to bed and sleeping or waking up ready to face the day. I can't remember even the joy of falling into bed exhausted knowing that sleep would cure me. Every night is a worsening ritual of failing to find even a single position where the pain is alleviated enough to fall asleep.  It's somewhat horrible to live in constant, worsening pain.

I worry. 

My husband and his partner are very close to launching a project. One that has the potential to bring us out of this poverty that we've struggled with for way too long. He's logged many hours in research and has many more to go. And as is the case in his line of work, he will have to start traveling again. 

I don't worry about his safety. I don't worry about the many miles they will travel. I don't worry about the risks they take. I worry about how I will manage without him here.

My husband does so much just to keep me working. He knows that every step hurts, and every minute I stand is painful. He does the household chores and keeps everything running. He gets up in the morning and makes sure that the day starts so I can sleep if I've managed to fall asleep. He takes the kids to their activities and supervises their schoolwork. On occasion he goes so far as to help me dress when walking across the bedroom or standing up is just too much. 

I'm just not sure how I will manage to take care of not only myself, but my kids, pets and home if he is gone. I used to grouse when he was gone, but I could handle it. Now, I'm not so sure. 

Sleepless

It's pure, unadulterated pain. I spend my nights dozing, unable to fully sleep because of the pain that prevents me from finding a comfortable position. It aches, burns and stabs through my knees, legs and back. The muscles in my legs aching with a pain that no stretch, no exercise, no technique will mitigate. The night is when I pay for the sins of my vanity, the sin of knowing that I can carry more with both hands, I can walk faster without relying on the cane, the crutches. I can will myself to be almost normal, but there is a price for that willfulness.

The stab of pain that slices raggedly through my knee causes me to draw my breath in as though its the first time I've ever felt it. Except it manages to continually surprise me. How, after so long can it surprise me? How, when I feel pain day by day, moment by moment, does it catch me off guard? I weather the storm, tensed and fearful of the next one. Hoping I feel nothing but reliable aching, knowing that the cutting pain will come in moments, always, forever. When I am weak it reduces me to tears.

I work so hard to hide the worst of the pain during the day. I work so hard to hide it during the week. And I pay for it. I pay. Nights are rendered sleepless, pointless in pain. Weekends are nothing more than days to suffer the fullest extent of my efforts to hide from the world. The pain contorts me into the old hag of stories, crooked and hunched, shuffling along the walls and furniture grasping for support.

I'm ashamed at how aged I feel. I'm ashamed of the pain that steals my life from me. I'm ashamed of how it steals the life from my family, leaving them to take care of each other and me.

My patience and willpower wear thin after a while. There isn't a reprieve.  There is never relief.

Acceptance

It's taken me a long time to begin to accept that I will always be struggling. Struggling to make enough money to cover the bills, struggling to walk and struggling to accept my life.

I'm coming up on two years since I got hurt. A lot has changed in those two years, and its been hard. The axiom is change is hard.  The reality is that some change is incredibly harder than other.  The struggle to protect my children, the struggle to provide, the struggle to find my way are so much harder than I ever thought. I don't wish it on anyone.

I've yet to see the silver lining of the overall situation.  Do I understand being disabled better?  Yep, but did I ever not feel compassion for the disabled?  Did I ever forget being poor as a child? No, not ever. I can't say that I ever harassed or persecuted the poor, homeless or disabled.

So I've learned to accept the struggle. I've learned that the mark of a successful weekend is intense pain of bones grinding against bones like a century-old person. I wish for nothing more than to curl up and not exist. Tear-inducing pain is my measure of physical success.  My week is for recovery.  Its a crippled take on the weekend warrior.

I miss a lot of my old life. I miss the everyday adventure of finding the world with my children. I miss filling the boredom with little trips and explorations. Its only been two years, and yet they've already forgotten many of the places we went and things we did. I miss the opportunities. I mourn the lost memories. I mourn the lost opportunities.

Part of mourning is acceptance. Accepting doesn't mean that we forget. It just means that we realize that we can't change how things happened. And its hard.

Why can't this be fixed?

Big Sister came to visit over Presidents Day weekend. My situation reminds me of how much I miss.  We used to be the ones to travel and go visiting -- our lives not held down by the constraints of school or traditional working schedules.  Now we are held back by our lack of disposable income, lack of reliable vehicles, and lack of time. It means we miss out on a lot of life and laughter.  And did we ever laugh.  With the grown nieces, the great-nephew, my own kids and the laughter of picking up right where we left off, the weekend was much too short.

She's worried about my knee and my plans, in the way that big sisters are apt to worry.  When will I replace it? Why haven't I pushed for the surgery? We need a plan.  How can she help?

I understand her concern. My husband and I carefully weigh the situation.  While I could afford the actual surgery costs now, I can't afford the time off.  I'm certain I wouldn't lose my job if I took the time to have the replacement surgery, I'm just not sure I can afford not working after the sick time and vacation time is used.  Recovery is longer than the paid benefits of my job. This is really what holds me back.

We live on this financial razor's edge, so carefully balanced that one day late on a bill or an hour short on a paycheck tips us to ruin. I can't afford the extra weeks of unpaid time off.

Imprisoned

Quicker than the last time I had the cortisone shot in my knee, the pain has climbed to higher levels again. Its inevitable. I live in a constant state of excruciating pain.

The snow has melted in the yard, and the urge to get ready for summer has plagued me.  Some mornings, I stand at the bedroom window and imagine how I could change things to be better.  I wonder if an apple tree in that spot, or maybe placing a chicken coop over there and fencing in a garden of raised beds near it would be a better use of our land. I imagine how peaceful the backyard could be once spring and summer come around. 

Most mornings, I stand and see the off-white wall of vinyl fencing and the brown, dormant grass.  The gray, February sky and brown lawn remind me that there is no garden of Eden waiting to be discovered in the yards of people who can't do the work. There is only the obligation that I leave my family.  Unable to do the things I once enjoyed, I'm left to rely on a spouse and children who never liked and never wanted the same things as me. 

So I stare out the window knowing this year will be like the last and I'll be nothing more than a prisoner -- stuck behind the walls of the empty yard, only leaving for work-release. "We have to keep you in good enough shape to work," is the reminder I hear when I start to break apart. There is nothing more to it.