Caged

Today is the day that I will unfold my wings. I will turn my head slowly from side to side and feel a gentle burn in my neck. I will see what is on my right and my left and know that the world is frightening, but less so than yesterday.

I do not fly, not yet. I am caged, by life and by love and by responsibility. I have caged myself. I am tightly tied up in expectation and obligation, moved only by thoughts of what should be and never by thoughts of what I am or could be.

I will stretch my thoughts today – spread them out and air them and allow them to bask in sunny ideas before I fold them back up and place them back into the nest.

I will know that there is more. More joy and pain and hunger and more room to soar. I am not ready, not yet, to find out what is beyond the next cloud, but I am ready to dream about it. I am ready to be more, but only if someone else takes my from my cage. I cannot leave on my own. You must expect me to fly before it will become true. 

I will know that there is more, but I will not fly. I have caged myself in your expectations of what I am and must be.

Easier

It is so much easier to write when your problems are all in your head. Real world problems make you tired and overloaded with laundry and checking temperatures and freezing ice packs and… And. I can’t keep going. Actually doing it is hard enough. I don’t want to relive it.

My daughter has something wrong with her. Somehow her body has decided that her healthy little perfect self is the enemy. It is attacking and fighting itself, and she feels awful. She has fevers for months on end. She has joint pain and bone pain and muscle pain and chest pain and eye pain and headaches and tummy aches and rashes and generally just feels like crap.  We made an appointment with a rheumatologist- I scheduled it in December and the earliest available appointment is still two weeks away on February 11.

I have all of these conflicting emotions and feelings. I admire her ability to be sweet and generous and loving on her worst days. I feel a sick desire to tell her to stop whining on the days when I know it isn’t so bad. I teeter between indulging her and telling her to toughen up. I don’t have any answers; I have no way to make this better. 

Over the last few days I have burst into tears at inappropriate moments. I cancelled her gymnastics membership today, and bawled my way through explaining why. I came home to her staring at the ceiling looking through her narrowed fingers. She was experimenting with the blurry view through chilly blue shaking hands. I cried again, and she tried to soothe me. It wasn’t the first time but I hope it is the last.

I don’t know what my role is supposed to be here. She is a rock and I am the water eroding her serenity. I am her rock and she is the water eroding my serenity. We balance each other and ebb and flow and ebb. I am supposed to be better and stronger, and she is the one in pain. But I cannot separate myself from her. There is still an invisible cord tying us together in the center of our bodies. And her pain is mine, and my pain is hers. And we feed each other’s fears and soothe each other’s pains. And I wish I could take it for real – every bit of it, every piece of sorrow and heat and cold and sharp, biting pain. I would be her and she would be me if I could find a magic wand to make it so.

Guilt

There is something so forbidden and sweet about stealing out of the house early in the morning, even when it is for something mundane like an oil change.  I whispered in his ear, bribed him with donuts and electronics, and got one of the kids out of the house to be my company while the others slept.

I knew the dog would wail at the front door, but there is no way around that. If I put him outside he would wail at the back door. If I shut him in the bedroom, he would wail at the bedroom door. He loves me.

So now I am in trouble. One child is with me, enjoying coffee milk and playing minecraft. The other is making her father miserable because the dog woke her. I am a bad mother, but it really isn’t a bad thing. If I didn’t do this, they would sleep the day away.

I can justify anything.

Desperate

There is a tapping inside of my brain, drumming tap tap tap against my ears while they all talk and I am choking on my sweater and hot and desperate to make it STOP.

Every toy piled on the sofa feels like sandpaper on the skin of my wrist, burning and grinding at something that should be cocooned in comfort and they are talking and the tapping is incessant and I am mad with chaos and desperate for PEACE.

Someone next to me pushing their skin into my arm and the dog is hot, sweltering and scratching and the sticky feeling of the inside of my teeth after chocolate and the lights from the television make me desperate for QUIET.

It is time. Time to send them to bed and just be. There is a fine line between motherhood and insanity.

The Moment

And then, there was that moment. The one where I almost started sobbing like an infant in front of four false smiles and a collective know-it-all attitude.

We are waiting for results from a psychoeducational evaluation.  They won’t come back for a couple of weeks.  In the meantime, we had the default five minute conference that lasts forty minutes, speaking with the whole educational team, observed by administration, with me battling the world for my son’s peace.  I would say battling for his sanity — it feels that way, but it sounds too dramatic.

He is private and reclusive. His visible emotions are false, and he won’t allow himself to break in front of anyone except me. Broken bones get a grimace and then stoic acceptance. Bad grades and good grades both are greeted with a shrug and a forced laugh. He will not share his real self with anyone.

He is brilliant, planning how to cure cancer and debating whether boron could replace diamond in industrial application if there is a future shortage.  He tells his teacher that obsidian is igneous, and she says he is wrong… it is just smooth lava rock.  Furious with the so-called correction, he collects each finger into a tight fist and swallows rage.  (Yes, rage over a rock. Rocks are important, at least in his world). He comes home, and packs up his rock collection and field guides for a time, until his teachers are smart enough to teach him.

Most tests are perfect, and then there will be packs of failure.  He will bring them home and continue to study and learn for four hours per night — more than I did in college, and he is only nine.  He feels stupid because he can’t remember that capital letters and punctuation are important.  It takes that four hours daily and pain and fear and tears for him to achieve as he does.

In the conference, they say that since he is on honor roll and fakes his sweet smiles in class, that there is no problem. That he achieves to his ability. That I shouldn’t worry about an occasional 63… it is a high f.  That the only person who is worried about him is me. And then they close the grade book and look at me expectantly. At this point, the experts have spoken.  They have spoken, and closed the book, and they are finished with the conversation.

“You don’t understand. Yes, he is on the honor roll. I know he isn’t telling you that he hates going to the board. He won’t tell you that; he would have to expose his humanity.”

“The child you are describing is not the child we see.”

Ok. Yes, I get that.  But just because you don’t see it doesn’t mean that it doesn’t exist.

Am I wrong for trying to make them understand? Does it matter? I want to cry. I don’t want him to cry. No more tears, damnit. It is time to be done with that.

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Unsettling Peace

Yesterday was pleasant. Almost lovely. We visited and talked, fished and sang, gardened and played and had a quietly calm family day for the first time in forever. I mean that almost literally.

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Lake

Mom gave a great show of normality; the only flaw was in me, not her. I kept expecting a break in what I assumed was a thin veneer, but it did not come. The mom that I know she can be held true, and I was surprised, in a good way.

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Quiet pools

And then there was Kelley. That was also a very nice surprise. Everything I had heard was good, and it all turned out to be true, with a few other things I hadn’t heard but were equally wonderful.  Yes, I am well aware that if you are not related to me or dating someone related to me, I just lost you. It would’ve been a long dull story. You are fine without knowing it. Just be happy for us all… Kelley is a nice add.

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Sweet Sana

I felt emotionally dull and achy at the end, though. I don’t know if I thrive on chaos, and things were just too calm.  It could’ve been a mild advance on the self pity that mothers’ day always brings. Or it could’ve been sheer exhaustion. That is a frequent state in my life.

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Blessings

I am in danger of whining. It is time to stop and count my many blessings, one by one. Maybe I should go two by two to speed up the process.

Chaos

Someday, sooner rather than later, she will not remember me. She will call me by her sister’s name or think I am just a nurse, there to give her meds. That will be the day I truly learn what loneliness is. I know what it means now, and I have tasted it once or twice, but I have never eaten the meal.  I can think of nothing more alone than to be unknown by the person who has know you longest.

I do not know whether I would rather that she die sooner and that the day never comes, or if I trust that I will handle it with a modicum of grace and my snarky sense of humor.  Should I pray for as many days as possible?

I am meat caught between the sandwich of children and parents. Granted, one slice of bread is thicker than the other; my first responsibility has to be the kids. But I am caught, smothered, covered, just the same.

The alzheimers was cleverly disguised in mental illness and just general contrariness, so it took a while to see it.  I find it easier to empathize and feel mercy and love now; that is a small blessing.  But though my relationship with her is easier, nothing else is.

I do remember, on most days, that it is not about me. It is about her, and salvaging what scraps of time and memory there are now, before they sink into an abyss beyond my reach. 

It is about my children, and preserving a dignified memory (that may be too much to ask, as she isn’t dignified on her best days and never has been) for them of love and wisdom.

I hope (oh so much) that I will find a way to fill the gaps and be what she needs, and that I will have her as she is now on the good days for as long as possible. I feel maternal towards my own mother, and that is unsettling, like vertigo or airplanes.

I am frightened. And so is she, much more than I am.