Thursday, February 11, 2016

Should vs Want

I'm sitting here at the intersection of should and want. And really, want has a fork in the road. While should and want seem like opposites and enemies - going in completely different directions - the should actually lines up very well with the want. They run parallel, dependent on one another.

But the wants. Yes, there are two. The wants run in completely different directions from each other. And that, I suppose, is the problem. That, and the issue of inertia. Well, inertia and habit. But let us focus on one problem at a time.

There is the want with the desire for freedom from rules and responsibility. The want that has me shirking the should, running as far away from it as I possibly can. The want that ignores consequences. The want that cannot seem to look past the end of its nose. This want, and the fact that it seems to be winning, has me looking in the mirror, barely able to recognize myself. And the more that this want wins, the harder it is to ignore it. This want, combined with inertia and habit, weigh me down like an anvil placed on the middle of my chest as I'm lying down. Like shackles as I walk. Like rocks in my pocket. This want has me hiding from reality and lying to myself.

Enter should/want. Oh, how I hate should. Should makes me want to run away. Should awakens the quietly sleeping rebel in my soul. Should sucks out every ounce of energy I seem to be able to muster in a day. But without the should there is no greater want. The want that has ambition and hope for the future. The want that wakes me up the morning and keeps me moving through the day. This want is a desire for better, for self-actualization, for health, for success. This want haunts me everyday. I cannot shake it. It gets quiet for a while, that want. Sometimes it seems to disappear as I reason it away, succumbing to the gravity of the other want. But it's always there when I wake up in the morning. When I go to bed at night. In my more lucid, energetic moments, that want is strong and loud.

Until it's not.

And the biggest problem is that the greater want. The actual want, that I really do truly want, only comes with the should. That damned should that I so deeply want to avoid. That should that piles up and gets bigger and bigger so that it becomes overwhelming. That should I take in bits and pieces every day. Because really, I don't avoid the should, I just can't seem to do all that the should requires. So I take the most pressing part of the should and the rest? Well, the rest succumbs to the want. Not the greater want. No, the rebellious and tired want. 

It's a problem. And I'm truly not sure which want is going to win.

Monday, January 18, 2016


I'm sitting in my family room soaking up the quiet. It's snowing outside. I have water sounds playing full blast inside. I'm contemplating another cup of coffee (with cream). The house is empty except for me.

It has occurred to me (once again), that I love being alone. The solitude that I am gifted every day when my kids go off to school is deeply treasured. And quite frankly, never feels like enough.

Now I'm sure that if I wasn't surrounded by so much love, I wouldn't crave the solitude. I would feel lonely. I know that. But I have a child that needs so much attention when she's home that it creates an inability to reliably get anything done. Or relax. This seems to translate into a craving for alone time. Lots and lots and lots of alone time.

Please don't get me wrong. I love spending time with my loved ones. I really do. But I also love being alone.

I wonder if I will ever get enough. And when I do, if it'll be too much because someone I love is gone. Someone I depend on.

My solitude is treasured because it is limited. I'm not sure it would be treasured if it was forced. Not that I want to find out. I don't. Nope.

But right now? The solitude is sweet. Damned sweet.

Wednesday, January 13, 2016

What stresses me out

I'm on the brink of an anxiety attack right now. Just on the edge. No real good reason why... that's just the way it goes.

I took a pill. I'm calming down. I'm starting to think straight again.

Every once in a while I have a little mental crisis about where I am in my life. What I'm doing. What I've accomplished. Who I am. blah blah blah. As a former overachiever, I think this is to be expected. But my breathing started going and I started shaking and feeling that I NEED to do something right NOW. I started panicking. I don't know what, but something HAD TO HAPPEN NOW! And tears were threatening.

Here's how it started:

I saw the statistic again flash by on my Facebook feed about stress levels of caregivers of autistic children and combat veterans having the same level of stress.

"See," I say to myself, "Give yourself a break."

And I do. I really do. But there are just some things that I want to deal with that I don't want to live with, even if they are caused by this stress. There's got to be a way to fix those big things even though they seem insurmountable right now. And then the insurmountability got to me and I started to crumble.

But I caught it and now my pill is making me dozy, meaning that I will likely not get much done today toward my goals that I've set. It's okay though, because my body is beginning to relax and I'm not panicking any more. And that is worth more than anything that I could be accomplishing.

How I deeply wish I had the drive to be able to overcome these damned emotions. It makes me feel weak and lazy because I'm not doing the work I'd planned to do. I'm NOT weak and lazy, because I'm still functioning right now. Because I trampled on that anxiety and didn't let it take hold. That takes work and a shitload of energy (and my pill). But now in the aftermath, my plans of productivity that will one day take me to my goal are on hold.

But I am calm and I feel more relaxed than I have in awhile. And those insurmountable things will be dealt with slowly. In small steps.

Too slowly if you ask me. But a step ahead is better than no steps ahead.

What stresses me out?

  • having too much to do
  • not reaching my goals
  • feeling like I've not accomplished anything
  • when my kids are sick or not doing well in school
  • when friends and family are in crisis
  • when I'm not doing my best.
  • when I feel like I'm living in chaos
  • when my daughter loses it. when she doesn't cooperate
  • when I'm tired
  • feeling like I'm wasting time
So I walk this balance of self-preservation and mental health. Do enough to make me feel like I'm accomplishing something, but not enough to feel that I'm going to break down.

I'm not enjoying being limited by my body and my mind. But there it is. I am.

Now I shall take a nap.

Monday, November 17, 2014

SMS Awareness Day

Finleigh is a happy, affectionate, and energetic little 7 year old girl who is in Grade 2. She has an amazing memory and can recall the smallest detail of someone she met or something that happened even years before. Sometimes her emotions overwhelm her and she becomes upset, often leading to severe meltdowns. This is typically out of her control and may start or stop for no apparent reason. On the flip side, she has the ability to bring a smile to people's faces with her energy and an enthusiastic hug.

November 17th is World SMS Awareness Day, a day when those of us affected by SMS tell our story. Finleigh was diagnosed with SMS just after she turned 6, when she was in Kindergarten. We'd been searching for the cause of her difficulties since she was born but it took visits with many specialists and several rounds of genetic testing before we found our answer. Finleigh has Smith­Magenis Syndrome, a difficult diagnosis to be sure.

We love Finleigh with all our hearts and we know she touches the lives of many people she meets in a profound way so, on this day, we wanted to share with you her diagnosis because we hope to increase awareness of this syndrome. Many of the doctors and health care professionals we've met over the years have not heard of SMS nor understand the complications that surround it. It is our hope that with awareness will come more research and eventually treatment, since there is no cure. SMS has similarities to many other diagnoses and has been likened to a combination of Down Syndrome and Autism, but it is very different and complex as it affects every system of the body in challenging and unexpected ways. This makes it difficult to treat and interrupts her life significantly. But Finleigh is strong and takes this all in stride.

Please help us spread the word about this rare syndrome. For more information, you can check out, an excellent resource 

Sunday, November 16, 2014


I know it's the exhaustion talking. I KNOW it is. Tomorrow, I'll feel better again and I'll be okay. But do you know why SMS awareness is so important? Because it's so goddamned hard.

Hard, actually, does not even begin to describe it. It doesn't touch it, really, but that is the word that will have to do. Hard.

Day 6 post op and that pain that my daughter was handling so well has come. And when the pain comes because I've not been on top of her meds or she refuses to take them or she was sleeping when they were due, she is very sure to let me know. And yet, she insists that nothing hurts. We've had some extreme tantrums - some that included her flipping over our futon.

She's 7 and she can flip over a futon.

And she's been waking up multiple times per night. Mostly to cry and pull off her pull-up and then yell some more until she falls asleep out of exhaustion. I am now sitting on my unmade bed because she peed in it this morning and so I washed the sheets but didn't get a chance to put them back on. And now I'm so tired, I think I'll just sleep in the unmade bed.

Who the hell cares, really?

5 days straight of this following the near hell that was those hours in the hospital and I'm pretty much at the end of my rope.

Brian's been working 12 hour shifts since I got home. He got up in the nights with her when he was working days, but he's working nights now, so he can't.

So, that explains why I'm so cranky and tired and frustrated and feeling sorry for myself. But these are exceptional circumstances. They will pass.

Sort of.

Because her meltdowns haven't been that much worse, just a little closer together. And I can't help but think about the fact that I've now missed 2 family occasions in the last month because I can't travel alone with Finleigh. Or leave her with anyone for long. And I feel so very left out. And sad. And my waistline keeps growing and I'm horribly out of shape - too tired and demoralized to do anything about it. So, when I carry my 60 pound daughter up the stairs for the third time that night to put her to bed, I am completely winded... like I just ran 5 km. What have I let happen to myself?

She smeared blood from her bleeding finger on the doors and the walls last night. She would not let me put on a bandaid. She would not let me hold her. She would not stop crying. She just smeared blood on the walls. Small mercy - she avoided the carpet. Hooray. And I won't even talk about the toileting issues we've had with her lately. But my friends, it's been daily and smelly.

She's gotten more violent with the boys. She's hitting them more. Throwing things at their heads. She goes up behind them when they're watching TV and hits them in the head. What kind of life is that for a child? You can't even watch TV without wondering if you'll suddenly be hit.

Or sit at the computer. She slipped out of my hands today and went running at her brother from behind, pushing the chair he was sitting on so that his face almost hit the computer.

She's not been impacted by a lot of the medical issues, but we have behaviour ones in spades. And I, for one, am tired of this life. Really, really tired. And yes, we get help. I am lucky and grateful for the help. But dammit, this life sucks.

And then she looks up at me with her brown eyes and smiles her big smile and runs to me and gives me the biggest hug. A trusting, loving, squeezy hug that melts my heart and makes me feel guilty for hating my life so much. And she tries to help with dishes and cooking, but she makes things so much messier. And she dances to her music. And she talks about all the things she loves. And she trusts me. And shows her love unconditionally. And always apologizes after she throws or hits or yells or melts down. Always.

"I sorry mommy. I so, so sorry. Please forgive me. I no do it again."
"I know, baby, I know..."
"Mommy, I not a baby. I a kid."
"You're right, my big, big kid. I forgive you."

Of course I forgive her. I always forgive her. She can't help it. And that's maybe the worst part. She can't help it and there's absolutely nothing I know that I can do about it. I'm trying, but it's like searching around in the dark. And doctor waiting lists slow things down. And trying new drugs takes time. And whatever else we've tried. Or will try. Or whatever.

And that. That is why we need more awareness. We're not the only rare disorder. We're not the only disorder that has behaviour and physical issues. But we still need be known about, because something's got to give.