Sunday, August 6, 2017

The post that had a name, but now doesn't because it doesn't match what I wrote


I am coming out of the year from hell. This is not an exaggeration. This year, I nearly lost one of the dearest things to me in the entire world. This year was harder on me than finding out my little daughter had Smith-Magenis Syndrome.  This year was a year of internal changes that has completely and utterly changed the way I look at the world. This year has drained me physically, emotionally, and mentally more than I thought possible. This year required strength that I did not think I had available to me. This year? Was shit.

But I’m coming out of it now, stronger and – I don’t think – all that much worse for wear. And through it all, I still had SMS and parenting and life to deal with. I don’t know how well I really did with it all, but I have survived. And life is better now. Mostly.

SMS, doesn’t feel like the worst thing in my life these days. It will again, I know. The kids are dealing with anxiety and other mental health issues. There are seizures now that have started up this year with one of my kids… we’re trying to get to the bottom of that.

I have lost 40 pounds. I feel still inextricably fat and out of shape. Too large for my body… and yet, often completely comfortable with myself. Grateful for the things I can do. I dislocated my shoulder this winter. My arm still hurts sometimes. It’s not back to normal… It probably never will be. I have plans to try to get into better shape. Plans that may or may not pan out… but the intention is there, and for that I am glad, because at least I have the mental energy to care. A little bit. Enough to do something about it, but not enough to beat myself up if it doesn’t happen.

I started a part time job, which has been easier to fit into my life than I’d suspected. I’m trying to get my graphic design business off the ground. And by trying, I mean that I spend a lot of time thinking about what I should do and have spurts of energy where I actually begin the process of doing something, and then I stop and then just feel frustrated that the only way I’m getting clients right now is through word of mouth. And wishing that I made more money at my chosen career and was able to make it work for me so that I can be there for my kids – especially my SMSer – and still contribute to the family coffers in a significant way that doesn’t just support my wine habit.

All of these things… my health, my kids, my marriage, my career… I want to throw my entire self into each of these. I want to be the very best at everything that I do and everything that I am.

I want to be able to run a marathon and look the way I want to look and wear the clothes I want to wear and eat healthy without struggling with it.

I want to be the most awesome parent for my kids and help them with their own struggles and be there to help with homework and figure out a way to raise money for SMS research and be a good advocate for my kids in school and help my kids be the best people they can be.

I want to be the spouse my husband needs and support him in the way he needs supporting. And to stay married.

I want to be successful and respected for my work and make enough money so that we can pay down some debt and so that we have choices and so that we can make sure my boys can go to the schools they want and my daughter can be in a high quality assisted living situation where she’s safe and I want to travel and finish the renos on my house.

I want to get some hobbies again. I want to get lost in a novel, to knit some beautiful projects with gorgeous yarns that I see online, to paint and play with colours. I miss getting lost in creativity. I want to do that again.

I want. I want. I want.

None of these are particularly ridiculous wants, I don’t think. And I hold onto each one of these wants loosely, because if I care too much, I get overwhelmed and shut down and do nothing. I pace in my house. I play stupid games on my phone. I scroll thoughtlessly through Facebook again, and again, and again. The books are sitting right there to read. My kids are in the next room being ignored or refereed as needed. My paints sit on top of the fridge, unopened. My treadmill collects dust, the running apps unused, the running path a block from my house never sees me. The vegetables in the fridge rot. My computer grows cold as I – yet again – do not open Adobe Suite and use the skills I know I have. I pour a glass of wine and turn on Netflix and tune out.

Is my desire simply not strong enough? Am I still struggling with depression/anxiety? Am I simply overwhelmed by the responsibilities in my life? Is my perfectionism getting in the way? How do I find inspiration? How can I find balance?

I’m not sure that balance is possible for me right now. Maybe it could be… with schedules and discipline. I shudder at the thought.

And this is where I’m at a loss for what to say in this long, wordy post. Because I feel like I put my bare minimum into everything and that it’s not enough to fulfill who and what I want to be. But that minimum is the absolute most I’m even able to give. I’ve played around with changing my goals. Expect less from myself. Put all my energy into just one thing. But that leaves me feeling unhappy and unfulfilled. For while I love the things I HAVE to do… they’re simply not enough. I want more. I need more. I’m just not sure how to drag my sorry ass there.

Right now I’m being patient. Pondering. Watching. Trying to keep up with what I’ve started. That seems to be my process. And when the answer finally comes to me, it’s good. I hope the answer comes to me. I hope I can figure out… in my middle age… who and what I can and should be. It feels late, but I know it’s not.


I hope.

Sunday, April 16, 2017

Happy Easter

I've been relatively quiet about our SMS experience lately. We've found a fairly reasonable rhythm. We've largely accepted our lives as they are. We've found our SMS normal after 10 years of practice. It's not easy, but we're surviving, and even thriving at times.

Finleigh turned 10 in February.


Looking SO grown up. She helped decorate her own cake this year.

But my friends, sometimes things are just so ridiculous that they must be told...

Mr. Gecko was ripped from his perch and then partially eaten.

Look close, can you see? This gecko from Puerto Vallarta. Hand made by artisans. Brought home carefully and lovingly because it reminded us so much of life down where lizards live. Geckos running up the walls, hanging out in their charming way. Well, they charmed me anyways. Which is why this little guy got his own wall... as if he was climbing his way to hide in the rafters. He's been there for a good 5 years. Adding colour to our home and making me happy every time I look at him.

And then today... Easter Sunday... after getting up and hunting for chocolate at an ungodly hour, most of us us gathered to watch TV in the other room while Finleigh entertained herself in the room you see above. The room is full of toys, an iPad, a TV, colouring and craft paraphernalia, and is connected to the room where her basket full of chocolate is sitting.

And whilst we were obviously being far to laissez faire for 8am on a Sunday morning, my darling, TEN year old daughter, climbed up, grabbed our beloved gecko, and began chowing down on him.

Yes, those are teeth marks on Mr. Gecko and we found beads scattered on the couch. We hope there was nothing toxic, because it's entirely possible that she ingested at least one of the beads, and who knows about the wax that the beads are attached by.

How? Why? What???

I should be used to weird and crazy behaviour. I should be used to odd, ridiculous things happening, not just SMS related, but my whole life in general. Nary a day goes by where I don't roll my eyes at something. I seriously could not make this stuff up.

But my gecko. "Safely" on the wall - with chocolate in every corner of my house - is the thing that get's eaten.

Seriously, SMS. Seriously???

Oh, and Happy Easter.

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.