Friday, November 17, 2017

SMS Awareness Day - 2017

Smith-Magenis Syndrom

Today, 11/17/2017, is SMS Awareness Day. This day was chosen because of its similarity to the genetic deletion that causes Smith-Magenis Syndrome - 17p11.2.

I wasn't going to write anything about SMS this year. I hover between wanting to share with the world the chaos that is my life and wanting to protect my daughter. She is funny, quick witted, loving, caring, and sweet. She has a way about her that charms nearly everyone she meets. She - this beautiful child - is a true blessing. I love her with every fibre of my being. Just as I love my other children, but with an extra dose of protectionism and fear that the world will eat her up. But we had a particularly difficult morning with her this morning and the words came flowing and filled up my head.

My husband so aptly put into words what runs through my head nearly every morning.

"Nothing like starting your day feeling like a failure." 

Yes. YES. That is it. From the second this beautiful little being wakes up in the morning, we either feel like a failure or are bracing ourselves for what is to come. She bounces between happy and sad, excited and angry, gentle and destructive as if she were jumping on a trampoline. It's incredibly difficult to keep up with while still maintaining sanity. As the bus pulls up to take her to school, if we catch her at a good moment, she happily skips to the bus, exclaims the bus driver's name as she runs to give her a hug and then happily makes her way to the back of the bus (because she heard her big brother talk about how cool being in the back of the bus was). If we catch her at a bad moment, she's screaming and yelling the whole way to the bus. Throws her things around and tries everything she can not to have to go to school. She hasn't won yet, but this morning was a close one. We weren't sure if the bus would be able to drive away or not.

Most of you that will read this know us. Know about Finleigh and SMS. Most of you know that we struggle and find life hard. But this year, on the forefront of my mind, is the mental health toll it takes on my family. Including Finn. It can't be easy to be so very out of control of one's emotions all the time.

But there are four others in my little family that struggle each day to rise above this life we've been handed. I function fairly well now, thanks to my medication, but it's still a daily struggle to keep my anxiety at bay and not fall into depression. My sons both have pretty high anxiety themselves. They never know when their sister is going to yell at them, or run at them to hit them or hug them, or throw something at them. We've had the most interesting things fly in our house. If you're not in the right mindset, it gets to be really upsetting. And lest people think that the fathers of these children escape without scars, think again. They may not be as vocal or share their feelings in the same way, but you can bet that this life has been damned hard on my husband. Perhaps he's been affected worst of all.

The resilience it takes to raise children with SMS is near superhuman. Ask any parent of a child missing 17p11.2, and they will likely agree. At least every one that I've ever talked to would. There are as many days as not when I wonder how I'm going to make it through. When I wonder if I truly have the reserves and the strength to wake up another day and do this again. When I wish beyond all reasoning that all this crazy would just stop.

And this is coming from a woman with amazing supports around her. A school that loves Finleigh and deals with her quite well. A bus driver that is patient. A friend that loves Finleigh and helps out with childcare. Amazing parents that take Finleigh for sleepovers and keep her for days at a time so we can take trips and regroup and sleep. A family that accepts Finleigh for who she is and loves her so much. A fabulous respite worker that Finleigh (and we) loves. A super support system of other SMS moms who get it and feel like family to me. I am really lucky. Seriously... so many people are doing this with so much less support. I would say I don't know how they do it, but I know. We do what we have to do. We just do. It doesn't mean that our lives are happy or fulfilled, but somehow we wake up each morning and do what we have to do... there is very little choice.

If you'd like to learn more about SMS or donate to the cause go to PRISMS or SMS Research Foundation. Both organizations are wonderful and run by parents just like me... except way more organized. I'm deeply grateful to them all.

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.