Sunday, July 10, 2016

A good moment


Some days are good.

My parents took Finleigh overnight last night, so I slept in. And when I woke up I lingered in bed. Because I could.

While there, I went on to social media to find that both my husband and my best friend had posted two excellent articles on privilege and intersectionality. Now, I don't do much about it, but I am passionate about this topic... few things can get me worked up as much as people refusing to understand that not everyone has the same opportunities in life. (In case you're curious, this is one and this is the other)

I have surrounded myself with the right people.

When I came downstairs, I saw my husband - shirt off - installing the new dishwasher. I mean, ladies, is there anything more sexy than a man with his shirt off doing handy work around the house (and that thinks about social justice)? Not in my world.

I went over to give him a kiss and he said, "I smell. I got dishwasher water all over me." I looked at him. Meh. Kissed him anyways.

I have two intelligent boys upstairs that are funny and self aware and caring, albeit a little obsessed with their video games.

And I'm now sitting in my family room, that is decorated just the way I wanted it with things that I love. It did not burn down and is just the way we left it two and a half months ago. Hot coffee beside me. On the verge of launching my new business (more to come on that another day). Just finishing up a project that I've found inspiring and fun. And I'm proud of the work that I've done. I have time, in this moment, to learn some new information that will help me with the project.

And I'm going over for supper at my parents' house tonight. They took my biggest stressor in life for the day and are now going to feed me! There will even be wine.

Life isn't perfect. It's still really, really hard. But I'm savouring this beautiful, stress-free moment where my heart beats normally and the tension in my chest has all but gone away. I'm grateful for these moments. I'm grateful that I can enjoy the moments when they come. I'm grateful that I can write them down, so that when life feels overwhelming I can come back here and remember that it's not always that bad. I'm not sure that five years ago I would have believed that things could be this okay. If only just for this moment, things are good.

Sunday, June 12, 2016

Stop talking down to me

One of the things I find the very most frustrating as a parent of a child with special needs is the way professionals talk down to me. It's bothered me since the very first thing I had to take Finleigh to as an infant, but has begun to irk me more and more the longer I'm in the system and understand how things work.

Now, don't get me wrong. The vast majority of people that I work with for Finleigh are wonderful. And do you notice I said "work with"? Yes. Work with. They help us out, they provide services that they are paid for. But I'm working too, albeit unpaid. That aside, my point is that they are wonderful. They are like friends. They treat me like their equal, something I appreciate a great deal.

But often when I start working with new people, they get this certain tone in their voice. It's a slightly slower pace, where vowels are drawn out slightly, and I'm being talked to like I'm a child. A stupid child. I don't believe these people are trying to be condescending, but they are. As if they assume that, just because I have a child that didn't develop normally, I didn't develop normally?

They sit there and explain things to me that I already know. My kid is 9 after all. And they say it slowly to make sure I understand. And then proceed to explain to me how Finleigh must be feeling or why she's acting the way she is. As if I don't know. And you know what? They're almost always wrong. Their textbook answers don't fit Finleigh. Their textbook answers are not answers, but pieces of information that are accepted as general wisdom. Which is general and doesn't always work. So I smile and nod and if they're around long enough they change their tune, every single time. If they would just listen first to what I have to say... and I mean really listen... before going off into their little spiel, they would save us both a great deal of time. And save me from becoming a little rude.

I bring this up now because since I've been away from home during our evacuation, I've run into this two times (once in person, once on the phone). I've sought out help twice since we've been away and twice I've been talked to like I'm a child. A slow child who, despite having raised my daughter for nine years, doesn't understand how the system works or how she works.

But I do understand how the system works. I know many people who work in the system - inside and outside of my relationship with Finleigh - and have had many discussion about things. I understand the divisions and the hierarchy and largely how money is divided. I understand how SMS works and that it sucks and is inconsistent and hard to stay on top of. I understand that for my emotional and relational health, I need a break sometimes from cleaning up pee and being stuck in my house and dealing with meltdowns. And I dare anyone who talks to me in this way to step into my shoes for a few days.

So now, we are looking at three more weeks without respite. And while Brian and I are both home and can tag team and cut the work in half, we are both going crazy. Every time we try to go out as a family, we end up turning back. She does ok one on one, but we'd dearly love to spend some time as a family or as a couple. Watch a movie without having to pause it 12 times? Read a book without having to stop to clean up a mess? It doesn't seem possible these days with SMS. I could call the Calgary government system and likely be passed around from condescending person to condescending person. And then we'd have to put Finleigh in the hands of yet another stranger, who will likely be awesome, but it gets old after awhile and makes me feel selfish. So at this point I think we'll forgo the government funding that is in our contract (except it's not because staffing issues have put the department months and months behind and so we actually don't have a contract right now) and deal.

It's beautiful here. The mountains and the trees take my breath away. We're in a house that is beautiful (a blessing and a curse). These things help. But they don't erase the yelling and the crying and the chaos.

But I've gone off topic.

Please. Please, please, PLEASE. If you work with special needs families, don't talk down to us. We're not stupid and, in fact, it's possible we know more about certain subjects than you because this is our life and we spend hours upon hours researching how to make our lives and the lives of our children liveable.

So really... from this tired mom... who might just explode one day... please...

Stop talking down to me.

Wednesday, June 8, 2016

Tired


I'm not just tired, I'm exhausted.

I'm tired of being limited because of SMS. I'm tired of not being able to head downtown with the kids for a couple hours because someone loses her crap within 10 minutes of leaving the car. I'm tired of having to carry my kid out of the grocery store because the cashier offered her a goddamned sticker. I'm tired of not having my bedroom to myself because she'll wander around the house at night and I wake up with a little certain someone in my bed almost every single morning. I'm tired of not being able to keep my toiletries in the bathroom. I'm tired of the fight we seem to have to have to do every single little thing. 

I'm tired of not being able to leave my kids home alone. My oldest can babysit, my youngest is 9. My two oldest can stay home alone, but leaving the three of them together turns into all out chaos. We can't hire a typical teenaged babysitter because we need someone "trained" to handle Finleigh if she gets upset. And so now, instead of being able to go out with my husband for a nice dinner - or go for a walk on the trails, or shower, or do yoga, or work on my computer, or any other thing that most people (expect parents of babies, toddlers or special needs kids) can do on their own - I'm stuck at home. Improvising or trying to find a way to make it work with the whole family... which almost never works out. Ever.

We are 9 hours away from home right now. Brian will likely have to go back up to work for a week or two until the end of the month when our rental here runs out. Aside from a few hours of respite and some dates Brian had with Finleigh, we've been together. I can't relax when she's around or get anything productive or meaningful done. I don't know what she'll do. She has a tantrum or she freaks out or gets into crap or walks out the front door on a very regular basis. I watch a TV show and she gets quiet, I walk into the room that she was in to a mess of something. Pee on the floor or 20 bandaids unwrapped and stuck to something (both of those happened in one day). Plus, with things out of the norm, it's helpful for her to have some extra attention.

So, I thought perhaps it would be beneficial to find some help. Some respite. We're supposed to have 30 hours per month... more when school's not in. I called the government agency. It took her 5 minutes to get what I was trying to say. She didn't even give me a change to ask my question before she went into her condescending little speech full of information I already knew. And have known for a great many years... given that I deal with this system all the time. Of course, the number I was given was for the wrong area, so she had to call me back with the right number. But I'm done. I'm tired. I don't think that even if there is someone in this town that can help us, we'll get what we need. Not sure I'll bother calling, I'll just suck it up. Chained to this beautiful house (that I'm am so very grateful for and has an amazing view, but is surrounded by places and restaurants that I want to go to and explore, but can't). Just because 10 years ago, my husband and I decided we wanted a third child. 

I'm tired. 

Whiney? Yes, 100%. Ungrateful, ya, probably a little. 

But exhaustion tends to take away perspective. And today, I could not care less about how lucky I am or all the wonderful things I have or how many people have it worse (because I KNOW that's in the billions). But dammit, I'm so tired of this life sometimes. 

So tired.

Thursday, June 2, 2016

Storm coming


I walked here today. It took me maybe 10 minutes, and that was going the long way around. 10 minutes to this little piece of paradise.

I sat by the stream that fed this small lake. I love streams. I love the sound of moving water. It doesn't matter what it is... ocean waves, waterfalls, rivers, streams, or rain. Me and water, we have a thing.

I became lost there, sitting beside the stream. Soaking in the atmosphere of the mountains surrounding me. I was the only one there, alone. Not another soul there, save for the fly that landed on my ankle.

I sat despite the rain that threatened to fall. Drops fell here and there, but it was nothing compared to the storm threatening in the distance. It covered the mountain in the background and yet I stayed.

Finally, I decided I should head back to the chaos of my life. A stolen hour, much appreciated, was about to come to and end. As I walked to our temporary home, the rain came. And it poured down as I smiled. It's beautiful here, in this place that embraces the nature that surrounds it. In this place that borrows the shade of the mountains. In this place where I hope to regain some peace.

Wednesday, June 1, 2016

Respite

The view from our living room. 

We are now in the Alberta Rockies. At a pretty incredible place, with views of the mountains, for HALF what we paid for that smelly dump in Edmonton. We are happy and at peace. I'm listening to birds singing as I type. If I close my eyes I can almost imagine I'm home. On top of that, I grew up in the rocky mountains, so in more than one way, I feel as though I am home. And now I can share my love of the rockies with my kids. Oh the fun we're going to have. 

The smelly dump. I can't even express to you how relieved I am to be away from there. After staying with my brother for nearly a week, we started to realize that we'd be away from home for a long time. We decided we needed our own space. We found a house and moved in with some friends who also have children our kids' ages, one having autism. In theory, the house should have been perfect and given what we were going to pay, it should have been amazing. Or at least clean. 

But it wasn't. It really, really wasn't. The "executive vacation house" that we rented was no more than a 15 year old, run down, smelly, dirty hole. We thought we were getting two living areas... instead, we got one living area and a bonus room with a couch, love seat, chair, AND two queen sized beds. There went our sleeping plans, but we made due. It worked okay.

The living areas were sparse, at best. At least the furniture was pleather and wipeable given the drips going down the wall behind the couch. We used boxes as side tables, so we could put our drinks on something. The carpets were stained. It smelled like something. Probably five year old dust. Or stale smoke. Or uncleaned animal. We couldn't quite place it. The fireplace, featured so prominently in the pictures, did not work. The cable box was on the floor with wires coming out of the floppy, cut carpet. Not sure how one is supposed to clean around that. The internet connection was spotty. And once we finally got it working, the owner sent a repair guy that made it worse. There was a basement suite in the house, which we didn't know about until we were driving to the house and the owner told us that we could only use the left side of the driveway.

The kitchen was... uhm... nearly unusable. The dishwasher left food all over the dishes. The oven didn't turn on. The fridge froze nearly everything, despite having it turned to the warmest setting. All three appliances looked older than the house and had grungy, dirty drips going down the sides. The microwave had had a massive explosion of something in it, uncleaned and gross. There weren't enough dishes for all of us. The plastic cups looked disgusting. The cutlery were cheap, cheap pieces of what I can only assume was metal as they rusted in the dishwasher. We used disposable everything while we were there. This expensive, "executive vacation house" had cuts in the countertops and a film over everything. I spent an hour cleaning just the countertops and "new" table, they still felt dirty. The cabinet above the stove had a layer of grease on it. The couple pots that were there were gross and unusable. We ended up borrowing pots and buying the other necessities we needed to make the kitchen work, that we then didn't use much because... well... the oven didn't work and the fridge kept freezing our produce. 

When we opened our bed that first night, we found hair in our bed. Long hairs that were not the colour of any of the people in our house. The same hairs were in our shower. The bedding was threadbare and we couldn't trust anything to be clean at that point. After being displaced for a week, all we wanted was our own beds. We settled for the next best thing by heading to Ikea the next day and buying new blankets and pillows, just so we could sleep in comfort. We found a used razor behind Finleigh's bedside table. When we talked to the owner about the dirtiness, she didn't even apologize. She just told us that all her other clients had been happy and there were lots of the people that wanted the place. Then she asked us to mow the lawn. HA! For the price we were paying, we should have had professional landscapers in there every other day. 

Since we had paid for three weeks, we stayed. Insurance or not, we could not afford to pay anymore for housing as this was at the very tiptop of our budget. We did take pictures of all this and more that I don't want to waste any more blog space on, but like pictures of beauty (unless taken by the most talented among us), they just do not do any of it justice. Besides... I don't want to contaminate my blog with a careless, greedy woman's version of "executive". 

Our new "home" is what I would have expected from the first place, but even better. Everything I'd expected from the first place is here. And more. For about half the price and with views to boot. I cried when we walked in and I realized that we had everything we needed here. While we were in the other place, I kept telling myself that I was being entitled and had expected too much. After all, we had the space we needed and we all had a bed. But coming here, I know I wasn't. We were being ripped off, pure and simple. We have all agreed that we will not talk about the other house anymore. This will be my last mention of it. From now on, it will be referred to by all of us as "the house that shall not be named." That chapter of our evacuation is done. 

Voluntary re-entry begins today for Fort McMurray. We could go up as of June 3rd according to our neighbourhood. We will not be going up, however until at least the end of June. 

We've read that water will not be drinkable until the end of June and the hospital will not have full services until the 21st. We can't trust Finleigh not to drink the water and make herself sick. Quite simply, although our house is standing and likely just fine, it is not safe for us yet. 

The husband will be back to work later this month and we have no clue if insurance will cover any of this, but it's worth it to us. For the first time in 30 days, I'm more than just fine. I'm good. Really, really good. We're going to treat this time as a bit of a vacation and starting living again instead of just existing.