tag:blogger.com,1999:blog-76154993591702060872024-03-13T11:33:15.309-06:00One Day at a TimeLife with Smith-Magenis SyndromeAnonymoushttp://www.blogger.com/profile/12615585233433171724noreply@blogger.comBlogger785125tag:blogger.com,1999:blog-7615499359170206087.post-62213742157652254942019-01-25T21:09:00.000-07:002019-01-26T15:11:49.829-07:00SnoDance!When my daughter cries all the way home, it's a typical outing for us. When I cry all the way home, you know it's extra traumatizing.<br />
<br />
Finleigh (with Smith-Magenis Syndrome) is almost 12 years old now and she is in the last grade in her school, so I am hardened and experienced. Not much bothers me and I knew exactly what to expect when she asked to go to the school dance... kindergarten to grade 6. We've been there before. We've done this over and over again. It never changes.<br />
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Everything that was predictable happened.<br />
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And while I'm still fighting an anxiety attack... I want to remember my girl. My sweet little girl that just wanted to have fun.<br />
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I fell asleep after she got home from school and I got home from work. I've been so tired lately and I just couldn't seem to keep my eyes open, so I dozed off on the couch. I woke up to her asking me to do up her buttons. I squinted up to see her in her pink, fancy dress. So I did up her buttons and then it dawned on me. The thing I was hoping we could avoid. The school dance.<br />
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She asked for noodles for supper, so I made her the new favourite - beef Ichiban noodles. She finished her bowl and then we - her excitedly, me reluctantly - headed off to the dance.<br />
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And this is the part I want to remember. I wasn't able to get a picture... so I will try to describe it as best as I can.<br />
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Short for her age, her dirty blond hair in a two day old pony tail, she skips excitedly into the school wearing a slightly too tight pink dress with the sash fluttering behind her because she refuses to let me tie it. Her grey tights aren't pulled all the way up and don't really match, but are what she has on because they are her only pair and she knows dressing up includes tights. We take our boots off and she walks cautiously in to the crowded hallway. She sees a couple of her classmates. She calls out their names and gives them hugs. They smile at her, hug her back and tell her it's great that she came. She looks at me and tells me her friends are here. We walk on. Apparently there's nothing more to say there.<br />
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The gym is loud, as dances are want to be. She puts on her pink, noise-cancelling earmuffs that I thankfully (or wisely?) grabbed as we walked out the door. Under her arm, she carries her baby doll, who she affectionally refers to as "Baby". She's so happy to be there. I give her a couple dollars to buy some glow sticks, which she handles really well, content with the limit of two that she's allowed. I feel proud of her. These kinds of things can be hard for her.<br />
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She sees more classmates and... I'll be honest here... her interaction with her peers is one of the harder things for me to watch these days. Because I remember being in grade 6 and these girls that have been going to school with her since kindergarten are looking so mature now. They can babysit and are independent in so many ways (I didn't see many of their parents around). Finn always approaches the kids the same way, whether they initiate the interaction or not. She enthusiastically calls out their names and gives them a hug. The girls giggle and talk to her like she's 3 years old. The boys awkwardly give her a quick side hug. She is completely oblivious to the changing dynamics that are beginning as these kids, that she's grown up with, begin to truly outpace her in more ways than just academically.<br />
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It's the biggest reason I didn't want to go. The meltdowns I can handle - I don't like them, but I'm well practiced. But the social aspect is becoming more and more painful to watch.<br />
<br />
We set up shop in the gym. I sit on the edge... I simply cannot bring myself to dance. I used to. I used to get up and make my kids dance and put on a smile and have fun. Instead (mom fail) I sit on the side beside the exit door so that she can find me easily and watch our stuff. She wanders a few steps from me, does a couple dance steps, and comes back. She's thirsty. We get her a juice box. She drinks her juice then pretends to feed some of it to her baby. She grabs her baby and wanders a few steps more. She comes back and asks me to watch Baby. She wanders a little further. She's happy. Shy, having fun, and happy. Not looking for her friends like I thought she might. This goes on, back and forth until the dreaded door prizes are announced. They are the beginning of the end for my dear, sweet, innocent little one that just wants to be part of everything and who can't quite understand why she didn't win anything.<br />
<br />
We talk it through, I try to explain to her all the things but she slowly escalates and becomes more and more upset. When she starts throwing things, I know that it's time to go. We do the walk of shame, blah, blah, blah. Fight with the boots. Fight with the coat that she refuses to wear and then puts it on and then throws it on the ground twice on our 1 block walk to the car in -15 degrees. I think a car may have slowed down and taken a picture of her in her short sleeved dress. I hope it doesn't end up on social media - either as a meme for how tough we Canadians are or to parent shame me.<br />
<br />
Whatever.<br />
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She apologizes over and over again all the way home and until she falls asleep. I'm not angry. She lasted an hour there. I'm so proud of her... she's come so far. I really wasn't such a bad night, really. I'm not sure why it all hit me so hard. I guess I just wish I could make it all better and easier for her.<br />
<br />
But I can't.<br />
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And I hate it so much.<br />
<br />
<br />Anonymoushttp://www.blogger.com/profile/12615585233433171724noreply@blogger.com3tag:blogger.com,1999:blog-7615499359170206087.post-23442185017462023362018-09-30T11:19:00.000-06:002018-09-30T11:19:47.561-06:00Just another Sunday morning...<div class="" data-block="true" data-editor="61c26" data-offset-key="cujrq-0-0" style="caret-color: rgb(29, 33, 41); color: #1d2129; font-family: system-ui, -apple-system, BlinkMacSystemFont, ".SFNSText-Regular", sans-serif; font-size: 14px; white-space: pre-wrap;">
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<span data-offset-key="cujrq-0-0" style="font-family: inherit;">I don't know why I keep posting about life with SMS in a public forum where people haven't had the same experiences. It lays us bare and leaves us vulnerable. It can feel uncomfortable, opens us up to criticism, and well meaning comments that are made can make me feel worse. And yet... I still find myself posting and I'm not sure why. Perhaps it's that, after 11 years, I'm still trying to wrap my head around the ridiculousness that a tiny micro-deletion has wrought on our lives. </span></div>
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<span data-offset-key="d7nef-0-0" style="font-family: inherit;">Sunday morning with a preteen and teenagers. We all just want to sleep in, minus one. That one wants to go downstairs naked. Underwear is finally put on, but she is incensed that we would require clothes as well. So she fights with herself for 10 minutes. First that she has to get dressed. Then she choses something but requires me to dress her. When I refuse because she's ELEVEN years old, she throws her dress, bangs on her brother's door, yells, and stomps around. A couple more minutes of fighting with herself and she is finally clothed, but she can't do up the buttons, so I help her. And then I drag myself out of bed because she can't be trusted alone downstairs.</span></div>
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<span data-offset-key="d7nef-0-0" style="font-family: inherit;">Downstairs, she's so very proud of herself that she pours her own cereal. I allow it because I can't fight and she does need to learn independence. Empty cereal box is on the floor, the bag is across the kitchen. She goes to the table. Two more minutes and she happily comes back into the kitchen chewing on her chicken taco that was inexplicably left on the table overnight. I take it from her -panicked. I really hope she doesn't get sick. She is unhappy, but we avoid a meltdown over it. She wants to make another, we don't have the ingredients. She wants to eat a package of luncheon meat. She wants chips. I tell her to go eat her cereal. She eventually goes back to the table with much of what she was demanding.</span></div>
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<span data-offset-key="d7nef-0-0" style="font-family: inherit;">I make my own breakfast and when she sees it? </span></div>
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<span data-offset-key="d7nef-0-0" style="font-family: inherit;">(This is the part where I just stop in wonder. The rest? The rest was just noise. This is the part that makes me want to walk away and not come back. This is the part that has me trying to pull myself together by writing it all down)</span></div>
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<span data-offset-key="d7nef-0-0" style="font-family: inherit;">When she sees my breakfast she yells, "I DON'T WANT ANY FRENCH TOAST!!!!" </span></div>
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<span data-offset-key="d7nef-0-0" style="font-family: inherit;">"I didn't offer you any french toast. I just made myself two pieces."</span></div>
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<span data-offset-key="d7nef-0-0" style="font-family: inherit;">She yells some more. Then she throws her bowl of dry cereal on the floor, cereal flies everywhere. She moves into the next room and starts throwing her toys around. I send her to her room and after a couple minutes she finally goes. She continues to yell that she doesn't want any french toast. Husband comes out from the shower and assists. </span></div>
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<span data-offset-key="d7nef-0-0" style="font-family: inherit;">This entire occurrence takes about five minutes, but the wind is knocked out of me. This was not fun. I hate yelling. I hate fighting. I hate chaos. I hate having to function first thing in the morning. </span></div>
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<span data-offset-key="d7nef-0-0" style="font-family: inherit;"><i>Had she asked for some, I would have given her mine and made more. If she had asked for a bite, I would have given her a bite. If I had asked her if she wanted some, we likely would have had the same outcome.</i></span></div>
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<span data-offset-key="d7nef-0-0" style="font-family: inherit;">I sit eating, not enjoying a bit of it. And I wonder why my stomach feels upset so much of the time. (I don't really, I know exactly why).</span></div>
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My teenage sons are still hiding in their rooms. I don't know if they're awake or asleep, but I don't blame them either way. I wouldn't come out if I had the choice. </div>
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I hate this. I really, really, really hate this. I just want to eat my fucking breakfast in peace. It is, apparently too much to ask. When the kids were little, it was okay and I took these things in stride. It was expected that my coffee would be cold before I drank it and the breakfast would be a rushed through event. My kids have grown now and I feel that I've earned a breakfast that I can if not savour, at least enjoy. </div>
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I love this child. She is amazing and funny and loving and lovable and all sorts of things that are wonderful. She brings happiness, joy and colour to our lives. She doesn't do these things on purpose and let's all just remember that she wouldn't be doing any of this if she could help it. She wants to be happy and normal, but her genetics are against her and it leaves us all breathless and tired. </div>
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We smile, but we're tired.</div>
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Anonymoushttp://www.blogger.com/profile/12615585233433171724noreply@blogger.com4tag:blogger.com,1999:blog-7615499359170206087.post-27997775681335129932017-11-17T09:15:00.001-07:002017-11-17T09:15:29.283-07:00SMS Awareness Day - 2017<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiD-dxQS7wuP0P5wPlPXa9OSsY6jWi2aWRjR-b0_juBD7slg_Ci_bY3lVNzBhs2_TTsbtWFfImkK3UnU1HYpfRykkFZWCoXq52s4M-yq0kafOUA63V85BITNtB_pomzDGf75L6vmXzt8ELk/s1600/FinleighWalking.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Smith-Magenis Syndrom" border="0" data-original-height="1041" data-original-width="1600" height="416" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiD-dxQS7wuP0P5wPlPXa9OSsY6jWi2aWRjR-b0_juBD7slg_Ci_bY3lVNzBhs2_TTsbtWFfImkK3UnU1HYpfRykkFZWCoXq52s4M-yq0kafOUA63V85BITNtB_pomzDGf75L6vmXzt8ELk/s640/FinleighWalking.png" title="Finleigh Walking" width="640" /></a></div>
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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.<br />
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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.<br />
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My husband so aptly put into words what runs through my head nearly every morning.<br />
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<blockquote class="tr_bq">
<span style="font-size: large;">"Nothing like starting your day feeling like a failure." </span></blockquote>
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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If you'd like to learn more about SMS or donate to the cause go to <a href="http://www.prisms.org/what-is-sms/overview" target="_blank">PRISMS</a> or <a href="http://www.smsresearchfoundation.org/" target="_blank">SMS Research Foundation</a>. Both organizations are wonderful and run by parents just like me... except way more organized. I'm deeply grateful to them all.<br />
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<br />Anonymoushttp://www.blogger.com/profile/12615585233433171724noreply@blogger.com2tag:blogger.com,1999:blog-7615499359170206087.post-21300198408544285702017-08-06T13:42:00.000-06:002017-08-06T13:42:05.789-06:00The post that had a name, but now doesn't because it doesn't match what I wrote<div class="MsoNormal">
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<span lang="EN-CA" style="mso-ansi-language: EN-CA;">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.<span style="mso-spacerun: yes;"> </span>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.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-CA" style="mso-ansi-language: EN-CA;">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. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-CA" style="mso-ansi-language: EN-CA;">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.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-CA" style="mso-ansi-language: EN-CA;">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.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-CA" style="mso-ansi-language: EN-CA;">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. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-CA" style="mso-ansi-language: EN-CA;">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. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-CA" style="mso-ansi-language: EN-CA;">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. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-CA" style="mso-ansi-language: EN-CA;">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. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-CA" style="mso-ansi-language: EN-CA;">I want to
be the spouse my husband needs and support him in the way he needs supporting.
And to stay married.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-CA" style="mso-ansi-language: EN-CA;">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.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-CA" style="mso-ansi-language: EN-CA;">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. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-CA" style="mso-ansi-language: EN-CA;">I want. I
want. I want.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-CA" style="mso-ansi-language: EN-CA;">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.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-CA" style="mso-ansi-language: EN-CA;">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?<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-CA" style="mso-ansi-language: EN-CA;">I’m not
sure that balance is possible for me right now. Maybe it could be… with
schedules and discipline. <span style="mso-bidi-font-weight: bold;">I shudder at
the thought. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-CA" style="mso-ansi-language: EN-CA; mso-bidi-font-weight: bold;">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. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-CA" style="mso-ansi-language: EN-CA; mso-bidi-font-weight: bold;">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. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
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<span lang="EN-CA" style="mso-ansi-language: EN-CA; mso-bidi-font-weight: bold;">I hope.</span><span lang="EN-CA" style="mso-ansi-language: EN-CA;"><o:p></o:p></span></div>
Anonymoushttp://www.blogger.com/profile/12615585233433171724noreply@blogger.com1tag:blogger.com,1999:blog-7615499359170206087.post-2108536991269434092017-04-16T10:18:00.000-06:002017-04-16T10:20:43.635-06:00Happy EasterI'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.<br />
<br />
Finleigh turned 10 in February.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVo6BbBgEUOHlolGgcLPAoJRLTi8wxmCC_G_6vqUwXYXnCkLujCkz0gYGDQuVpp60qqMC24PQLpc7Iltt5CUflSwDp1iPerzI1DwHe9RMa_IU-l2y9h_qGG-4AztzWvD7kPO18rvHrHRCN/s1600/Finleigh10.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVo6BbBgEUOHlolGgcLPAoJRLTi8wxmCC_G_6vqUwXYXnCkLujCkz0gYGDQuVpp60qqMC24PQLpc7Iltt5CUflSwDp1iPerzI1DwHe9RMa_IU-l2y9h_qGG-4AztzWvD7kPO18rvHrHRCN/s640/Finleigh10.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><br />
Looking SO grown up. She helped decorate her own cake this year.</td></tr>
</tbody></table>
<br />
But my friends, sometimes things are just so ridiculous that they must be told...<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-kmW6xNG0AwwUbRnyx5eVqHRVQr0EKxbLiDsSn07ISRdUUs-wjNexTkfuMuYBFPnDkmDrfTwiZvxmhHgQpOx0Lg6gakwGCFXKtlLGyC-RaSIwCpTcYPFf0oRgS3JxkxmXBi0GhHj44DjE/s1600/SMS_vs_Gecko.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="512" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-kmW6xNG0AwwUbRnyx5eVqHRVQr0EKxbLiDsSn07ISRdUUs-wjNexTkfuMuYBFPnDkmDrfTwiZvxmhHgQpOx0Lg6gakwGCFXKtlLGyC-RaSIwCpTcYPFf0oRgS3JxkxmXBi0GhHj44DjE/s640/SMS_vs_Gecko.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mr. Gecko was ripped from his perch and then partially eaten.</td></tr>
</tbody></table>
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
How? Why? What???<br />
<br />
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.<br />
<br />
But my gecko. "Safely" on the wall - with chocolate in every corner of my house - is the thing that get's eaten.<br />
<br />
Seriously, SMS. Seriously???<br />
<br />
Oh, and Happy Easter.Anonymoushttp://www.blogger.com/profile/12615585233433171724noreply@blogger.com2tag:blogger.com,1999:blog-7615499359170206087.post-87703157464981672622016-07-10T14:00:00.000-06:002016-07-10T14:00:40.240-06:00A good moment<div class="separator" style="clear: both; text-align: center;">
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<br />
Some days are good.<br />
<br />
My parents took Finleigh overnight last night, so I slept in. And when I woke up I lingered in bed. Because I could.<br />
<br />
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, <a href="http://occupywallstreet.net/story/explaining-white-privilege-broke-white-person" target="_blank">this is one</a><span id="goog_121817674"></span> and <a href="http://www.macleans.ca/news/canada/how-black-lives-matter-co-founder-janaya-khan-sees-canada/" target="_blank">this is the other</a>)<br />
<br />
I have surrounded myself with the right people.<br />
<br />
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.<br />
<br />
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.<br />
<br />
I have two intelligent boys upstairs that are funny and self aware and caring, albeit a little obsessed with their video games.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.Anonymoushttp://www.blogger.com/profile/12615585233433171724noreply@blogger.com1tag:blogger.com,1999:blog-7615499359170206087.post-3879320770323543292016-06-12T13:32:00.001-06:002016-06-12T13:42:22.943-06:00Stop talking down to meOne 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.<br />
<br />
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.<br />
<br />
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?<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
But I've gone off topic.<br />
<br />
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.<br />
<br />
So really... from this tired mom... who might just explode one day... please...<br />
<br />
Stop talking down to me.Anonymoushttp://www.blogger.com/profile/12615585233433171724noreply@blogger.com0tag:blogger.com,1999:blog-7615499359170206087.post-22945723419249602932016-06-08T21:50:00.002-06:002016-06-08T21:50:55.811-06:00Tired<div class="separator" style="clear: both; text-align: center;">
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I'm not just tired, I'm exhausted.</div>
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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. </div>
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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.</div>
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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.</div>
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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. </div>
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I'm tired. </div>
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Whiney? Yes, 100%. Ungrateful, ya, probably a little. </div>
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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. </div>
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So tired.</div>
<br />Anonymoushttp://www.blogger.com/profile/12615585233433171724noreply@blogger.com0tag:blogger.com,1999:blog-7615499359170206087.post-5129173129415076042016-06-02T16:50:00.000-06:002016-06-02T16:50:54.449-06:00Storm coming<div class="separator" style="clear: both; text-align: center;">
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<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.Anonymoushttp://www.blogger.com/profile/12615585233433171724noreply@blogger.com1tag:blogger.com,1999:blog-7615499359170206087.post-14290093555424626442016-06-01T08:55:00.001-06:002016-06-01T08:55:58.196-06:00Respite<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggWL3qT-oyV4jpYoUbNoT3o_p5zuRZo3OmYZ5Mxk9VveJVI0X-kWWPN3peZuaicm_aqXaz2TB41yX14xMpX4DgEF686dKKdUtoD5woGmjDcnnpvj9eFhj4e1q7zE4zhnQizrW0hSt7G9X3/s1600/ViewFromOurHouse.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggWL3qT-oyV4jpYoUbNoT3o_p5zuRZo3OmYZ5Mxk9VveJVI0X-kWWPN3peZuaicm_aqXaz2TB41yX14xMpX4DgEF686dKKdUtoD5woGmjDcnnpvj9eFhj4e1q7zE4zhnQizrW0hSt7G9X3/s640/ViewFromOurHouse.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The view from our living room. </td></tr>
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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. </div>
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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. </div>
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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.</div>
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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.</div>
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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. </div>
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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. </div>
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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". </div>
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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. </div>
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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. </div>
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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. </div>
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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.</div>
Anonymoushttp://www.blogger.com/profile/12615585233433171724noreply@blogger.com4tag:blogger.com,1999:blog-7615499359170206087.post-37115193473316218292016-05-13T12:00:00.000-06:002016-05-13T12:45:15.243-06:00Fort McMurray Wildfire: The Morning AfterWaking up the next morning brought a profound sense of thankfulness and disorientation. We'd been so worried about making it to the city, that I could still barely believe we'd made it.<br />
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I found myself glued to social media, the radio, TV. We were horrible company, almost ignoring our hosts to find out the latest of what was happening to our home. Of course, our hosts were equally as glued, so that made it okay. Things like this update took our breath away.<br />
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We'd made up our minds to make our way down to Best Buy fairly soon to get an iPad for our girl. A week, a month? We didn't know how long we'd be gone from home. But what we did know was that there was no way we'd be going without a device for her. Finleigh's Smith-Magenis Syndrome makes it difficult for her to self calm and gives her a very short attention span. Her device helps with that.<br />
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Then I receive a message from an old friend that I hadn't seen since grade 9. She had an old iPad. Did Finleigh want it?<br />
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Did Finleigh want it? Did Finleigh want it? YES, Finleigh wanted it. The iPad of a teacher is a wonderful thing to have. So many cool apps. It was so great.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1o9a-NNNibzheP7-OMsZ7f9fObQDXfsnaiFrXuuqtkZEF0I0yjMuD42ezpxjM5Bb3f6yJd7eM5XM_2z5PO50X5HpSmYHDRnXpxyYNykAxhSawjWfIvaRiQl4TtS-7tr9cKzK8y_cwXOqu/s1600/13124732_10153515165686408_3789764184883165963_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1o9a-NNNibzheP7-OMsZ7f9fObQDXfsnaiFrXuuqtkZEF0I0yjMuD42ezpxjM5Bb3f6yJd7eM5XM_2z5PO50X5HpSmYHDRnXpxyYNykAxhSawjWfIvaRiQl4TtS-7tr9cKzK8y_cwXOqu/s640/13124732_10153515165686408_3789764184883165963_n.jpg" width="638" /></a></div>
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That it may have gotten dropped within hours and may or may not have a crack on the screen is completely beside the point. It still works. And she still loves it.<br />
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Comments poured in from all over. Loved ones and acquaintances glad to hear we were alive and okay.<br />
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Friends were stuck north of town, lodged, but stuck. People were stuck along highway 63, needing gas. Authorities were working to get gas to people. Good Samaritans were taking gas, food, and water to help those stranded.<br />
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Everyone had gotten out of the city. No one was hurt or had died from the fire, save one horribly sad vehicle accident.<br />
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Firefighters were working tirelessly to protect the city that is my home.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijQ1viD6Qp4ZWntdIhYg5uTew_wLdyiegjO7W0DFb2NrcektFtTEf5l2zVEIpO-L7pCSByopMRJWVDcWHvYoNmS3wfBmcij2xSABMzWV0YzzFssWsd44alixiONLT6QxIDcrKtNawawXrK/s1600/13151560_10154112562217645_6124740513435672347_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="414" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijQ1viD6Qp4ZWntdIhYg5uTew_wLdyiegjO7W0DFb2NrcektFtTEf5l2zVEIpO-L7pCSByopMRJWVDcWHvYoNmS3wfBmcij2xSABMzWV0YzzFssWsd44alixiONLT6QxIDcrKtNawawXrK/s640/13151560_10154112562217645_6124740513435672347_n.jpg" width="640" /></a></div>
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We could not sleep. How could we? We needed to know what was happening. But once night fell, most fire fighting had to slow down. Air crafts don't run in the dark. We would have to wait for morning to see if our home was still standing.<br />
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To read the first part of our evacuation story, go <a href="http://onedayatatime-am.blogspot.ca/2016/05/fort-mcmurray-wildfire-my-evacuation.html" target="_blank">here</a><br />
<a href="http://www.pinterest.com/pin/create/extension/?url=https%3A%2F%2Fwww.blogger.com%2Fblogger.g%3FblogID%3D7615499359170206087%23allposts&media=https%3A%2F%2F3.bp.blogspot.com%2F-JHCxsgn3_P4%2FVzUPvSofbOI%2FAAAAAAAADC8%2FQLPFTKInQmQG-DvZY_Kze1CQeG2GEp0cwCLcB%2Fs640%2F13151560_10154112562217645_6124740513435672347_n.jpg&xm=h&xv=sa1.37.01&xuid=BbN8R7LGDYGH&description=" style="background-color: transparent; background-image: url(data:image/png; border: none; cursor: pointer; display: none; height: 20px; left: 42px; opacity: 0.85; position: absolute; top: 1766px; width: 40px; z-index: 8675309;"></a><a href="http://www.pinterest.com/pin/create/extension/?url=https%3A%2F%2Fwww.blogger.com%2Fblogger.g%3FblogID%3D7615499359170206087%23allposts&media=https%3A%2F%2F3.bp.blogspot.com%2F-JHCxsgn3_P4%2FVzUPvSofbOI%2FAAAAAAAADC8%2FQLPFTKInQmQG-DvZY_Kze1CQeG2GEp0cwCLcB%2Fs640%2F13151560_10154112562217645_6124740513435672347_n.jpg&xm=h&xv=sa1.37.01&xuid=BbN8R7LGDYGH&description=" style="background-color: transparent; background-image: url(data:image/png; border: none; cursor: pointer; display: none; height: 20px; left: 42px; opacity: 0.85; position: absolute; top: 1766px; width: 40px; z-index: 8675309;"></a><a href="http://www.pinterest.com/pin/create/extension/?url=https%3A%2F%2Fwww.blogger.com%2Fblogger.g%3FblogID%3D7615499359170206087%23allposts&media=https%3A%2F%2F3.bp.blogspot.com%2F-JHCxsgn3_P4%2FVzUPvSofbOI%2FAAAAAAAADC8%2FQLPFTKInQmQG-DvZY_Kze1CQeG2GEp0cwCLcB%2Fs640%2F13151560_10154112562217645_6124740513435672347_n.jpg&xm=h&xv=sa1.37.01&xuid=BbN8R7LGDYGH&description=" style="background-color: transparent; background-image: url(data:image/png; border: none; cursor: pointer; display: none; height: 20px; left: 42px; opacity: 0.85; position: absolute; top: 1766px; width: 40px; z-index: 8675309;"></a><a href="http://www.pinterest.com/pin/create/extension/?url=https%3A%2F%2Fwww.blogger.com%2Fblogger.g%3FblogID%3D7615499359170206087%23allposts&media=https%3A%2F%2F3.bp.blogspot.com%2F-JHCxsgn3_P4%2FVzUPvSofbOI%2FAAAAAAAADC8%2FQLPFTKInQmQG-DvZY_Kze1CQeG2GEp0cwCLcB%2Fs640%2F13151560_10154112562217645_6124740513435672347_n.jpg&xm=h&xv=sa1.37.01&xuid=BbN8R7LGDYGH&description=" style="background-color: transparent; background-image: url(data:image/png; border: none; cursor: pointer; display: none; height: 20px; left: 42px; opacity: 0.85; position: absolute; top: 1766px; width: 40px; z-index: 8675309;"></a>Anonymoushttp://www.blogger.com/profile/12615585233433171724noreply@blogger.com0tag:blogger.com,1999:blog-7615499359170206087.post-30462060965496027682016-05-12T12:01:00.000-06:002016-05-29T22:20:02.210-06:00Fort McMurray Wildfire: My Evacuation<span style="font-family: inherit;">I'm from Fort McMurray. Did you know that? Probably not. I've always been pretty quiet about where I'm from. You know... for privacy. Or something.</span><br />
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<span style="font-family: inherit;">So yes. I'm from Fort McMurray. But I'm not living there right now because my entire city of 88,000 plus or minus are evacuated and not allowed to go back. Because fire.</span><br />
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<span style="font-family: inherit;">It seems that the news has been all over the world, so I suspect you've heard about it. 88,000 people slow fleeing for their lives. Fire fighters working 21 hours a day to put out "the beast" as it's become called.</span><br />
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<span style="font-family: inherit;">This is my story.</span><br />
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<span style="font-family: inherit;">The morning was clear and lovely. It was hot out. I had a meeting and we chatted like everything was normal, planning for a special needs camp we were to put on this summer. There was a news conference. The fire had hopped the river. I didn't think anything of it.</span><br />
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<span style="font-family: inherit;">Around 1pm, I headed out to go grocery shopping. I did NOT want to go grocery shopping, but it was the first Tuesday of the month and that meant 15% off. So with the desire to save money, I left the house, leaving my husband, Brian, to have a rest as he'd vacuumed the entire house that morning.</span><br />
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<span style="font-family: inherit;">I drove up to the Save-On Foods and saw this. These pictures simply do not do it justice. I couldn't get all the smoke and fire in one picture...</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRJ34RGiFnGsAXsqHg4E_tgVCp_tF4tC-kBF7SZ_FwVdJImgUt1Wj6UOKVqBo3M930nhVGyG5gMu7Yzfz7pfUfBfnT3m2Jdk32fiis9Mlzy9O974UdkOPbOipVgUUmxmQ3woxEkFBo1UfE/s1600/firebehindsaveon.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: inherit;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRJ34RGiFnGsAXsqHg4E_tgVCp_tF4tC-kBF7SZ_FwVdJImgUt1Wj6UOKVqBo3M930nhVGyG5gMu7Yzfz7pfUfBfnT3m2Jdk32fiis9Mlzy9O974UdkOPbOipVgUUmxmQ3woxEkFBo1UfE/s640/firebehindsaveon.png" width="480" /></span></a></div>
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<span style="font-family: inherit;">My heart stopped. It was ominous and scary. I fought the urge to panic and run away and went inside, confident that if we were in danger, we'd be told. The fire chief had said on the radio on the car ride over that the lower townsite was in danger and everyone else should be thinking about what they might pack. But it didn't occur to me that I would need to worry about anything.</span><br />
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<span style="font-family: inherit;">My cart was half full when a store manager came in looking a little panicky. "Have you SEEN outside?" He rushed off. There were murmurs of Beacon Hill on fire. I didn't believe it. Thickwood (where I live) was on alert? I texted Brian. People are a little panicky here, I said. And then shrugged and kept shopping. Almost done, I received this text from Finleigh's aide:</span><br />
<blockquote class="tr_bq">
<span style="font-family: inherit;">Do you guys want to come grab Fin. I am going to head home. We are on voluntary evacuation.</span></blockquote>
<span style="font-family: inherit;">Well...</span><br />
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<span style="font-family: inherit;">Brian called. What do we do? I had our only vehicle. Do I leave the food here? Do I check out and then come?</span><br />
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<span style="font-family: inherit;">Brian biked over to get Finleigh. I checked out with a very frightened cashier. Brian texted to tell me to get gas if I could. Line ups were crazy, so instead I went to get my son in grade 5 who was at a different school from Finn. I figured he could probably take the bus home, but better to be safe. When I got to the school, there was a line up to sign out our kids and half the class was already gone. My son was in tears. I was behind the eight ball here. I managed to fill with gas on the way home.</span><br />
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<span style="font-family: inherit;">We got home after 20 minutes at the gas station. My friend was picking up her boys and my eldest from the Jr. High. We were packing - just in case - and listening to the news. They interrupted songs every couple minutes to update the situation. The emergency broadcast signal went on. It was not a test.</span><br />
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<span style="font-family: inherit;">Brian was taking pictures for insurance. My friend was stuck in traffic trying to get the older kids. I was washing dishes and folding laundry.</span><br />
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<span style="font-family: inherit;">There was a barricade to go into Thickwood. My friend would not be able to get in to the neighbourhood to get her stuff or drop of my eldest. She hadn't even made it to the school yet to get them.</span><br />
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<span style="font-family: inherit;">The evacuations intensified. Suddenly we were under mandatory evacuation. I grabbed what I could. We packed the car and headed for mom's house - normally 5 minutes away. Today closer to 2 hours.</span><br />
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<span style="font-family: inherit;">Here's what I wrote on Facebook. It was 3:58pm. My grade 5'er would not have even been home from school yet had he taken the bus... which I'm quite sure was not running anyways.</span><br />
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<span style="background-color: white; color: #1d2129;"><span style="font-family: inherit;">Everyone. We are evacuating our house right now due to forest fires. We are OKAY! Don't worry about us. But this is an adventure.</span></span></blockquote>
<span style="background-color: white; color: #1d2129;"><span style="font-family: inherit;">We spent two of the longest hours of our lives trying to get to my parents to get our son and then stay traveling with my parents to wherever we were supposed to go. We were stuck beside my daughter's school. We watched air crafts dumping stuff over the fire. The school looked like this. </span></span><br />
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<span style="font-family: inherit;"><span style="background-color: white; color: #1d2129;"><span style="font-family: inherit;"><br /></span></span><span style="background-color: white;"><span style="color: #1d2129;"><span style="font-family: inherit;">We finally got to the corner where my parents were waiting with my eldest in their car (my friend was heading North to reunite with her husband) as we saw flames not far away. We saw FLAMES. I ran over and got him. Not because I didn't trust my parents, I knew he was fine... but I just needed all my babies with me. Things become crystal clear. when you think your life might be in danger. It was at this point that people lost their patience. People were driving on sidewalks and in the wrong lanes. At one point this one lane street had 5 lanes. People were panicking and we didn't blame them. It was the first time I felt scared. </span></span></span></span><br />
<span style="font-family: inherit;"><span style="background-color: white;"><span style="color: #1d2129;"><span style="font-family: inherit;"><br /></span></span></span>
<span style="background-color: white;"><span style="color: #1d2129;"><span style="font-family: inherit;">It took us hours to get through the city. Finleigh cried through much of it. We had forgotten her iPad and ALL her comfort toys at home. Her backpack was left hanging where we'd packed it. It was not pretty. All lanes were going toward the highway. As we got close, they opened the highway to go South (which was such a relief. Going north would mean no stores and no way to replace the things Finleigh used to keep calm). It had been closed for hours because there were fires everywhere. We were on our way to my brother's house outside of Edmonton, 450 km away.</span></span></span></span><br />
<span style="font-family: inherit;"><span style="background-color: white;"><span style="color: #1d2129;"><span style="font-family: inherit;"><br /></span></span></span>
<span style="background-color: white; color: #1d2129;">We drove through the city. There were fires in the forests. We could see neighbourhoods gone. It was surreal. I kept yelling, "Look!" "I can't believe this!" "My home!" "I can't believe it!!!" And a few expletives.</span></span><br />
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<span style="background-color: white;"><span style="color: #1d2129;"><span style="font-family: inherit;">We made our way slowly down the highway. </span></span></span><br />
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<span style="color: #1d2129; font-family: inherit;"><span style="background-color: white; font-family: inherit;">At 12:13 am I wrote:</span></span><br />
<blockquote class="tr_bq">
<span style="background-color: white;"><span style="color: #1d2129;"><span style="font-family: inherit;">So grateful the province got highway 63 doubled this past year. I can't even begin to imagine what it would have been like getting out of town.</span></span></span></blockquote>
<span style="background-color: white;"><span style="color: #1d2129;"><span style="font-family: inherit;">Cars were littering the sides of the road. Some had people in them. Some were abandoned because they ran out of gas. We kept saying how lucky we were that we managed to gas up before we left. The closest gas station is 200km south of town. The radio told us they'd run out of gas. As we passed by, there were hundreds of vehicles parked. Ready to spend the night and wait for gas. More gas stations south were also out of gas, according to the radio. </span></span></span><br />
<span style="font-family: inherit;"><span style="background-color: white;"><span style="color: #1d2129;"><span style="font-family: inherit;"><br /></span></span></span>
<span style="background-color: white;"><span style="color: #1d2129;"><span style="font-family: inherit;">We managed to find gas at 2:09 am. It was the only place open in town.</span></span></span></span><br />
<blockquote class="tr_bq">
<span style="background-color: white;"><span style="color: #1d2129;"><span style="font-family: inherit;">Found gas in Athabasca! Thank you Husky for bing open. Oh the relief! We can make it to Edmonton now.</span></span></span></blockquote>
<span style="background-color: white;"><span style="color: #1d2129;"><span style="font-family: inherit;">12 hours from when we left the house we made it to my brother's house. We were safe. We were together. We were at a place where we could find an iPad for Finleigh. All was well. </span></span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGKMiO-xToTAjqPqsiE6iiq8sd66ECAYGvmsXoiQhTKYqu7noIcS51yanXnmAHQCAR-QaxQtHN-fZD5F-FZzA43tFOJU9GJNTfQMSQy28QUgqm23JpIpw0FST0mP7KuWNkTm-ADUP2CZEi/s1600/Ben%2527s+House.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: inherit;"><img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGKMiO-xToTAjqPqsiE6iiq8sd66ECAYGvmsXoiQhTKYqu7noIcS51yanXnmAHQCAR-QaxQtHN-fZD5F-FZzA43tFOJU9GJNTfQMSQy28QUgqm23JpIpw0FST0mP7KuWNkTm-ADUP2CZEi/s640/Ben%2527s+House.png" width="640" /></span></a></div>
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<span style="font-family: inherit;"><span style="background-color: white;"><span style="color: #1d2129;"><span style="font-family: inherit;">Never have I ever been so happy to see my brother's house (and I'm always happy to see his house). 12 hours after we left home, we are safe and sound in St. Albert.</span></span></span> </span></blockquote>
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<span style="background-color: white;"><span style="color: #1d2129;"><span style="font-family: inherit;">And when we walked in, we saw a bunch of jerry cans full of gasoline all ready for him to come and rescue us in case we couldn't find fuel on the way down. Pretty great brother I have, I'd say.</span></span></span></blockquote>
<span style="background-color: white;"><span style="color: #1d2129;"><span style="font-family: inherit;">My experience as an evacuee has been interesting to say the least. I will share more in the coming days. </span></span></span><br />
<span style="font-family: inherit;"><span style="background-color: white; color: #1d2129; font-size: 14px;"><br /></span><span style="background-color: white; color: #1d2129; font-size: 14px;">To read part 2, go <a href="http://onedayatatime-am.blogspot.ca/2016/05/fort-mcmurray-wildfire-morning-after.html" target="_blank">here</a> </span>
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<span style="background-color: white; color: #1d2129; font-family: "helvetica" , "arial" , sans-serif; font-size: 14px;"><br /></span>Anonymoushttp://www.blogger.com/profile/12615585233433171724noreply@blogger.com5tag:blogger.com,1999:blog-7615499359170206087.post-22096350609135949632016-03-21T10:23:00.000-06:002016-03-21T10:23:29.771-06:00This morningWe pull up to the school just as the bell is about to ring. Finleigh waves at her friends. One of the girls waves back and starts walking toward the car.<br />
<br />
I've never seen this girl. I have no idea who she is.<br />
<br />
Finleigh jumps out. I put her backpack on her back.<br />
<br />
"Mommy, you walk with me?"<br />
<br />
"I think you can go by yourself."<br />
<br />
The little girl comes up to her. "Do you want to walk with me?"<br />
<br />
"YA!" And she skips off, happily. The little girl reaches for her hand.<br />
<br />
I stand, watching her run/skip/hop excitedly to the school. I feel the cool, almost spring air on my face as I smile.<br />
<br />
I am happy. Life is good. My little one, despite all her challenges, is loved and accepted. A mother could not want much more than that.<br />
<br />
Last Thursday, as I pick Finleigh up from school, a little boy puts his arm around Finleigh and tells me that she's his best friend.<br />
<br />
Two months ago, at a birthday party of a friend, the birthday girl lets Finleigh open some of her presents because she knows how excited she is. No one else is allowed to help, not even her little sisters. Just Finn.<br />
<br />
My husband reminded me this morning that it's three years today since we received Finleigh's diagnosis of Smith-Magenis Syndrome. Life is hard, yes. But it is also good.Anonymoushttp://www.blogger.com/profile/12615585233433171724noreply@blogger.com2tag:blogger.com,1999:blog-7615499359170206087.post-39789850249504404112016-03-06T17:14:00.001-07:002016-03-06T17:14:15.041-07:00RollercoasterWhat rollercoaster my life has become.<br />
<br />
In many ways life is easier and I feel more in control of my life.<br />
<br />
I've started my graphic design business (website still in progress) and I am deriving a great deal of satisfaction from my work. I love it. And I like feeling productive and seeing a final product - that lasts. Something concrete that will not be undone in 5 minutes. Something finished in a specific time period. A day. A week. A month. Not like child rearing, where one's success may not be truly seen until that child is well into adulthood.<br />
<br />
Satisfaction. Immediate results. Success. I like that.<br />
<br />
The husband hasn't been working overtime at all lately. It's been nice to have him home regularly. This way we share the load a lot more. Along with respite and help from my parents and friends, things don't feel so bad most of the time. Things feel good. And I can laugh at the goofy things Finleigh does. And when she defies me and refuses to do what I ask, I am able to just breathe and patiently wait for her to do what I ask. I have energy to clean the house. Cook decent meals. Volunteer in the community.<br />
<br />
But it doesn't take much to take me back to that dark, frustrated, life draining feeling that I felt so often when she was younger. This is the first full day I've been home alone with her in awhile and any motivation or energy or joy that I've had lately is gone. Completely and utterly disappeared. I walk into a room that she's inhabited recently and I just walk out. Crestfallen. Feeling guilty that I'm leaving it a mess, but unable to muster enough energy to fix it.<br />
<br />
My bedsheets, that I just washed yesterday, are now covered in hand cream that I had in my bedside table because I got complacent and let my guard down. And because I neglected to lock my bedroom door this morning when I went downstairs. It will probably stain, just like the lip balm she smeared on our bedding last week. The bedding was an expensive splurge because I loved it. I still love it... but it's worn and stained now. A perfect metaphor for life.<br />
<br />
And so, when she came downstairs covered in lotion from my bedroom I took her to a towel and told her to wipe herself off. Then I went upstairs and cleaned up the mess, as much as I could since the laundry is currently in use. And then I put the lotion back in my ensuite that has to be locked from the outside to keep her out at night and locked my door.<br />
<br />
I hate having to lock every single door in my house.<br />
<br />
Hate. It.<br />
<br />
A lot.<br />
<br />
Now I'm sitting her sulking and wishing - just a little bit - for a normal life. I count my blessing and look at all the breakable things in my house that still exist. But still mourn that fact that I can't keep fucking lotion or lip balm in my bedside table.<br />
<br />
It's the little things, I guess.<br />
<br />
<br />Anonymoushttp://www.blogger.com/profile/12615585233433171724noreply@blogger.com0tag:blogger.com,1999:blog-7615499359170206087.post-63852305447351555522016-02-23T21:56:00.000-07:002016-02-23T22:21:57.693-07:00Hot Chocolate<div class="separator" style="clear: both; text-align: left;">
Here's a post from my husband. He shared it on Facebook. Just another day in our SMS life.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQ6mU0SmDKcQd1ZO1vRiZaSZMcAXqmEGQlADRVgpLGaKaTN-VFsVzytj5OVAq04fPV3tsTWWHPpGyHV-tVGkjfw1xReSgWuAPUp12cA9cp8b40HbgHsiFlHIhhWpjAWv0KcCQw47bIsg4t/s1600/HotChocolateMix.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQ6mU0SmDKcQd1ZO1vRiZaSZMcAXqmEGQlADRVgpLGaKaTN-VFsVzytj5OVAq04fPV3tsTWWHPpGyHV-tVGkjfw1xReSgWuAPUp12cA9cp8b40HbgHsiFlHIhhWpjAWv0KcCQw47bIsg4t/s640/HotChocolateMix.png" width="640" /></a></div>
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It's time for a Smith-Magenis Syndrome snap-shot of the day. Literally! It looks like one of those funny pictures that explain why you don't want to have kids and, on the surface, that's exactly what it is. A little kid making a big mess. But there's more here than meets the eye. Finleigh is fiercely independent (a common SMS trait) and was trying to make herself some (cold) hot chocolate, made a huge mess, and was trying to clean it up with the broom when she called us in to help. </div>
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Finleigh was unable, at 9 years old, to do either of these tasks on her own. (That's make the drink or clean it up. She made the mess and eventually called for help just fine) </div>
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Notice the lack of table cloth? Finleigh bites holes in them (and the table too if you look closely). </div>
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See the plastic sippy cup? She knocks over all cups without lids and breaks glass ones. She once bit a glass. And broke it. The ceramic mug would inevitably have been knocked over or broken if she'd managed to finish making the (cold) hot chocolate. </div>
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The plastic plate? She likes to throw those and we got tired of buying new ones and cleaning up glass. And plastic hurts less when you're the target. On this day, I'd left her dinner on the table because she refused to come and eat with us. But I knew she'd get mad if it wasn't there when she came looking and a meltdown would ensue. So she ate cold food at around 7:30. Then she wanted the (cold) hot chocolate. </div>
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That's her iPad on the table. With her short attention span, we have a hard time keeping her at the table and this helps her stay long enough for us to get through a meal. It's outfitted with the strongest case we could find for when it gets thrown against the wall or covered in hot chocolate powder. </div>
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See the wall? Covered in a variety of food and beverages in addition to the marks/holes from her chair/iPad/dishes/body parts hitting it? </div>
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The scratched up chairs are cheap, spray painted, cast offs because she'll ruin whatever we use so there's no point in buying better ones. </div>
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Those clothes she's wearing? She changed into them, by herself, about an hour before. After urinating in her other ones. A rarer occurrence than it used to be besides the need for pull-ups at night. </div>
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Lastly, there's Finleigh. With a cocktail of meds running through her system. On the floor. Having a meltdown. Wanting to help clean up. But not. But wanting to. But not. Covering her ear as she's done since she was a baby. I had to lie to her about what I was taking a picture of because if she thought it was of her, she would have lost her mind. </div>
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Just a glimpse into our kind of normal.</div>
Anonymoushttp://www.blogger.com/profile/12615585233433171724noreply@blogger.com0tag:blogger.com,1999:blog-7615499359170206087.post-83107985391562116732016-02-21T09:54:00.001-07:002016-02-21T09:54:53.593-07:002.5 seconds of almost fameIn our small little Canadian life, being on the CBC news website for our province's capital city? Pretty cool.<br />
<br />
You can click below to see the write up they did as a follow up to the radio interview I posted about in my last post. Enjoy with us our 2.5 seconds of almost fame.<br />
<br />
<a href="http://www.cbc.ca/news/canada/edmonton/fort-mcmurray-girl-s-rare-diagnosis-a-mixed-blessing-for-parents-1.3453639" target="_blank">Fort McMurray girl's rare diagnosis a mixed blessing for parents</a>Anonymoushttp://www.blogger.com/profile/12615585233433171724noreply@blogger.com0tag:blogger.com,1999:blog-7615499359170206087.post-32021449039198772082016-02-18T10:31:00.000-07:002016-02-18T10:31:25.768-07:00#BeingDory<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUhOGhkF2RPeh_buGOyTZBXDws2poT9lXukYZ6mDmSwHGEv58AT-mWnWvFmBLEixwL2-q-6k-hqjY1MB8WkbH0ZKc5_lvzU7naqJ1iScG76OJ4FdRXx6hpDIE36ccWw8YzwG16uj231CWF/s1600/Keep_Swimming.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="456" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUhOGhkF2RPeh_buGOyTZBXDws2poT9lXukYZ6mDmSwHGEv58AT-mWnWvFmBLEixwL2-q-6k-hqjY1MB8WkbH0ZKc5_lvzU7naqJ1iScG76OJ4FdRXx6hpDIE36ccWw8YzwG16uj231CWF/s640/Keep_Swimming.jpg" width="640" /></a></div>
<br />
The SMS community has come together, lead by the <a href="http://www.smsresearchfoundation.org/" target="_blank">Smith-Magenis Syndrome Research Foundation</a> to see if <a href="http://www.ellentv.com/" target="_blank">Ellen Degeneres</a> might just lend her fame and goodwill to our cause.<br />
<br />
It's difficult, with such a small pool of people to garner enough momentum to get the attention of a person in such demand. Just go to her Facebook page. You'll see. People are writing requests to her literally every minute. That's thousands. Millions of people. All looking for Ellen's attention. All hoping she - being the kind person that she is - will shine her light on their want/need, just for a second.<br />
<br />
Our group just needs the world to know about us. We need more people to recognize Smith-Magenis Syndrome. We need this so that undiagnosed people can become diagnosed. We need this because SMS is original and hard to deal with and parents need HELP and UNDERSTANDING from others. We need this because so much of the medical community has never heard of it, so approaching it medically isn't necessarily done in the most effective way. We need this because there are ways to help our children with flipped melatonin production to sleep - but not if you don't know that your child has a flipped melatonin cycle. We need this because research can be done to help those with SMS and their families. We see outcomes for other genetic disorders being improved greatly with new genetic therapies. We need this for our kids too.<br />
<br />
Thus the Research Foundation.<br />
<br />
Thus the push to get Ellen's attention.<br />
<br />
We've been lucky in that our paediatrician was familiar with SMS once Finn was diagnosed. So she's willing to try the off label, out-of-the box medications that work for Finn. We've been lucky because we've had amazing people working with Finleigh, who have taken the time to understand how to deal with Finleigh and help her be her best. We've been lucky because we're surrounded by family that help and live in a place that support many of the things we need. We've been lucky because Finleigh hasn't had many of the very difficult medical issues that others have. SMS'ers have died from Meningitis because their illness wasn't caught soon enough. SMS'ers have heart and kidney issues that threaten their lives. SMS'ers are in and out of the hospital because of issues that no one can seem to figure out. They go to the hospital, get stabilized and are then sent home.<br />
<br />
Those things make Finleigh's over-the-top behaviours seem like nothing. They're not nothing... but they do put things in perspective.<br />
<br />
So, the campaign is #BeingDory. The movie<i> Finding Dory</i> is coming out soon. And all of us... like Dory in <i>Finding Nemo... </i>just keep swimming. We keep swimming despite the smearing of bodily fluids all over our homes. We keep swimming despite the damage to our things after an especially bad meltdown. We keep swimming despite multiple hospital visits. We keep swimming despite schools and doctors that just don't get it.<br />
<br />
We keep swimming. And we hope that Ellen sees that and helps us.<br />
<br />
But even if she doesn't, we'll keep swimming. And we'll keep depending on each other. And we'll keep trying. Because what other choice to we have?<br />
<br />
Brian and I were lucky enough to make it on CBC Edmonton Radio yesterday to talk about SMS. Our small contribution to the cause. Here's the link to it. The interview starts at the 11:10 mark.<br />
<br />
<a href="http://www.cbc.ca/player/play/2683864523" target="_blank">Listen here</a><br />
<br />
Friends, just keep swimming.<br />
<br />
<br />Anonymoushttp://www.blogger.com/profile/12615585233433171724noreply@blogger.com2tag:blogger.com,1999:blog-7615499359170206087.post-61032389594875349972016-02-17T09:00:00.000-07:002016-02-17T09:00:10.493-07:00A Poem - by Brian DowneyWhen I wasn't blogging much, my husband wrote a poem about Smith-Magenis Syndrome. I thought I'd share that too. Since we're sharing poems.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1-pzaQQdAxqerZzck-debWcVstVLQFHXOPXvmPpxSbKFAPYkZDSVi9CCSkX-NvPFNO9qw7Oqt-yHCVbwlFj7aiiHgox86o-RMRC8xSPhy-e4xhnTkv7mWXDiUNhc2gty0zwFLEBL9TKmB/s1600/Brian%2527s+poem.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1-pzaQQdAxqerZzck-debWcVstVLQFHXOPXvmPpxSbKFAPYkZDSVi9CCSkX-NvPFNO9qw7Oqt-yHCVbwlFj7aiiHgox86o-RMRC8xSPhy-e4xhnTkv7mWXDiUNhc2gty0zwFLEBL9TKmB/s1600/Brian%2527s+poem.png" /></a></div>
<br />Anonymoushttp://www.blogger.com/profile/12615585233433171724noreply@blogger.com0tag:blogger.com,1999:blog-7615499359170206087.post-29272205493594927392016-02-16T11:37:00.003-07:002016-02-16T12:54:30.239-07:00A Poem - by Rosa Farrington<div style="text-align: left;">
<span style="font-family: "verdana" , sans-serif;">I want to share this beautiful poem that a fellow SMS mom wrote:</span><br />
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<span style="font-family: Verdana, sans-serif;"><span style="color: #141823;">chromosome 17p</span><span style="color: #141823;"><br /><br />welcome to transparency<br /><br />and the mess that is me:<br /><br />mistakes committed,<br /><br />failures admitted<br /><br />sometimes i'm flying high on a cloud,<br /><br />and other times i wish i was buried deep underground<br /><br />the peaks and valleys-<br /><br />can we just fast forward to the finale?<br /><br />exhausted and spent,<br /><br />with nowhere to vent<br /><br />i'm grasping at straws,<br /><br />and all i want to do is withdraw<br /><br />from the hard part of life,<br /><br />and just eliminate the strife<br /><br />i just want to be carefree,<br /><br />reclaim my intact psyche<br /><br />that lies dead on the ground<br /><br />broken and bound,<br /><br />with no hope of being found.<br /><br />i question my existence,<br /><br />pray for sustenance or deliverance,<br /><br />two sides of a coin;<br /><br />separate not conjoined<br /><br />which one will i choose-<br /><br />or will it choose me? can i just refuse?<br /><br />the fact is, correlation is not causation,<br /><br />although that tenet does absolutely nothing to soothe my frustration<br /><br />against this rare, unfair chromosomal mutation,<br /><br />a minute genetic aberration<br /><br />responsible for so much devastation,<br /><br />with unfathomable future implications...<br /><br />i dig deep,<br /><br />searching for my inner determination<br /><br />in a sea of pain<br /><br />that threatens to drown me under the strain;<br /><br />weighted and heavy<br /><br />not leaving me with any<br /><br />strength<br /><br />to overcome this syndrome<br /><br />that i cannot fathom.<br /><br />and then, i catch a glimpse out of the corner of my eye,<br /><br />and realize i need to look no further than my angel's sweet smile<br /><br />and i can forget for a while<br /><br />and recognize the ability<br /><br />despite, and in spite of, her disability<br /><br />and that realization nourishes and energizes me <br /><br />to continue this journey,<br /><br />gives me the strength of a thousand elephants,<br /><br />and that damned deletion becomes irrelevant<br /><br />because my child is significant<br /><br />and what is, is what was meant<br /><br />i am uplifted<br /><br />no longer restricted<br /><br />by society's limitations-<br /><br />choosing to live by the standards of our own boundless expectations.</span></span><br />
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By Rosa Farrington</div>
</span></span>Anonymoushttp://www.blogger.com/profile/12615585233433171724noreply@blogger.com0tag:blogger.com,1999:blog-7615499359170206087.post-91288405107319552012016-02-15T22:49:00.001-07:002016-02-15T22:49:06.760-07:00Salad<div class="separator" style="clear: both; text-align: left;">
Finleigh loves to help in the kitchen. And now that she's NINE, she's becoming especially independent.</div>
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Take for instance making salad the other day...</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjS6CB4TEYxDggGFrp_cXsoMf2Nq7yNKtzd5zsWa0uBAluOXajhmFr-Dv8_fbNvFZ7z6yYXTikCVSF3KxzzGlhtSRvyStWdFQGhOsAYlpsnkcQ3Rt-1Iu4MVII5KAEdlN7XGHw_YWPXzK8/s1600/SMS_salad_1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjS6CB4TEYxDggGFrp_cXsoMf2Nq7yNKtzd5zsWa0uBAluOXajhmFr-Dv8_fbNvFZ7z6yYXTikCVSF3KxzzGlhtSRvyStWdFQGhOsAYlpsnkcQ3Rt-1Iu4MVII5KAEdlN7XGHw_YWPXzK8/s400/SMS_salad_1.jpg" width="400" /></a></div>
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I find that it is better just to let her do her thing. You know... with a table knife. And a salad spinner and a carrot peeler. And we get this pretty salad. With big carrot chunks and... crunchy dirt. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgK43NzaZ6J1SDX2DfIwvFYYfBFICc3r37o1FLnKgmo0jn4s4lik0HsxWtTs5w8j6wvmjV_Gn9Bjp_g1XCGGA0NH_DLFlyi0h4kbpNCW5LGTRsknAhAhC0NDTRXsz4dFZcGLIh98dvfNMKF/s1600/SMS_salad_2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgK43NzaZ6J1SDX2DfIwvFYYfBFICc3r37o1FLnKgmo0jn4s4lik0HsxWtTs5w8j6wvmjV_Gn9Bjp_g1XCGGA0NH_DLFlyi0h4kbpNCW5LGTRsknAhAhC0NDTRXsz4dFZcGLIh98dvfNMKF/s400/SMS_salad_2.jpg" width="400" /></a></div>
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But she was so very proud. SO proud. She went around to every plate at the table and dished up some salad. "Here you gope. Here you gope. Here you gope." Her brothers were thrilled. THRILLED</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinbS7o9L6MuiueR_V156azf3NlZ1vHO-2w7479bHLkYkSVPChjlD-gl7vs0m2vTl4Zqrm7EU04MEIOGCYGH6Cp7MKRnbzaI-TyUtOeyZTOlihC8I0A3JuH8N_Xpb-xmvTIKbgKg0yODuB0/s1600/SMS_salad_3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinbS7o9L6MuiueR_V156azf3NlZ1vHO-2w7479bHLkYkSVPChjlD-gl7vs0m2vTl4Zqrm7EU04MEIOGCYGH6Cp7MKRnbzaI-TyUtOeyZTOlihC8I0A3JuH8N_Xpb-xmvTIKbgKg0yODuB0/s400/SMS_salad_3.jpg" width="400" /></a></div>
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I was just happy that we avoided a meltdown. And had some exceptionally tasty salad that I didn't have to make.</div>
<br />Anonymoushttp://www.blogger.com/profile/12615585233433171724noreply@blogger.com0tag:blogger.com,1999:blog-7615499359170206087.post-85185908697049082552016-02-11T10:13:00.000-07:002016-02-11T10:13:31.018-07:00Should vs WantI'm sitting here at the intersection of <i>should</i> and <i>want</i>. And really, <i>want</i> has a fork in the road. While <i>should</i> and <i>want</i> seem like opposites and enemies - going in completely different directions - the <i>should</i> actually lines up very well with the <i>want</i>. They run parallel, dependent on one another.<br />
<br />
But the <i>wants</i>. Yes, there are two. The <i>wants</i> 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.<br />
<br />
There is the <i>want</i> with the desire for freedom from rules and responsibility. The <i>want</i> that has me shirking the<i> should</i>, running as far away from it as I possibly can. The <i>want</i> that ignores consequences. The <i>want</i> that cannot seem to look past the end of its nose. This <i>want</i>, 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 <i>want</i> wins, the harder it is to ignore it. This <i>want</i>, 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 <i>want</i> has me hiding from reality and lying to myself.<br />
<br />
Enter <i>should/want</i>. Oh, how I hate <i>should</i>. <i>Should</i> makes me want to run away. <i>Should</i> awakens the quietly sleeping rebel in my soul. <i>Should</i> sucks out every ounce of energy I seem to be able to muster in a day. But without the <i>should</i> there is no greater <i>want.</i> The <i>want</i> that has ambition and hope for the future. The <i>want</i> that wakes me up the morning and keeps me moving through the day. This <i>want</i> is a desire for better, for self-actualization, for health, for success. This <i>want</i> haunts me everyday. I cannot shake it. It gets quiet for a while, that <i>want</i>. Sometimes it seems to disappear as I reason it away, succumbing to the gravity of the other <i>want</i>. 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 <i>want</i> is strong and loud.<br />
<br />
Until it's not.<br />
<br />
And the biggest problem is that the greater <i>want. </i>The actual <i>want</i>, that I really do truly <i>want,</i> only comes with the <i>should</i>. That damned <i>should</i> that I so deeply want to avoid. That <i>should</i> that piles up and gets bigger and bigger so that it becomes overwhelming. That <i>should</i> I take in bits and pieces every day. Because really, I don't avoid the <i>should</i>, I just can't seem to do all that the <i>should</i> requires. So I take the most pressing part of the <i>should</i> and the rest? Well, the rest succumbs to the <i>want.</i> Not the greater <i>want.</i> No, the rebellious and tired <i>want. </i><br />
<br />
It's a problem. And I'm truly not sure which <i>want</i> is going to win.Anonymoushttp://www.blogger.com/profile/12615585233433171724noreply@blogger.com0tag:blogger.com,1999:blog-7615499359170206087.post-15592594720535132512016-01-18T10:26:00.000-07:002016-01-18T10:26:00.456-07:00SolitudeI'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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
Please don't get me wrong. I love spending time with my loved ones. I really do. But I also love being alone.<br />
<br />
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.<br />
<br />
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.<br />
<br />
But right now? The solitude is sweet. Damned sweet.Anonymoushttp://www.blogger.com/profile/12615585233433171724noreply@blogger.com1tag:blogger.com,1999:blog-7615499359170206087.post-46257063056591955232016-01-13T12:26:00.001-07:002016-01-13T16:42:44.598-07:00What stresses me outI'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.<br />
<br />
I took a pill. I'm calming down. I'm starting to think straight again.<br />
<br />
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.<br />
<br />
Here's how it started:<br />
<br />
I saw the statistic again flash by on my Facebook feed about stress levels of <a href="http://www.waisman.wisc.edu/news/SELTZER6.HTML" target="_blank">caregivers of autistic children</a> and <a href="https://www.disabilityscoop.com/2009/11/10/autism-moms-stress/6121/" target="_blank">combat veterans having the same level of stress</a>.<br />
<br />
"See," I say to myself, "Give yourself a break."<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
Too slowly if you ask me. But a step ahead is better than no steps ahead.<br />
<br />
What stresses me out?<br />
<br />
<ul>
<li>having too much to do</li>
<li>not reaching my goals</li>
<li>feeling like I've not accomplished anything</li>
<li>when my kids are sick or not doing well in school</li>
<li>when friends and family are in crisis</li>
<li>when I'm not doing my best.</li>
<li>when I feel like I'm living in chaos</li>
<li>when my daughter loses it. when she doesn't cooperate</li>
<li>when I'm tired</li>
<li>feeling like I'm wasting time</li>
</ul>
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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.</div>
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I'm not enjoying being limited by my body and my mind. But there it is. I am.</div>
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Now I shall take a nap.</div>
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<br />Anonymoushttp://www.blogger.com/profile/12615585233433171724noreply@blogger.com1tag:blogger.com,1999:blog-7615499359170206087.post-86666119528089517062014-11-17T07:00:00.000-07:002014-11-17T07:00:00.211-07:00SMS Awareness Day<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIxT_qHApgeDnLAib1vfxiGJPHk9Bz-OrfeFW6NCxNRnEwiphQ-QHBoU42lVxIDI6iU9f4YhQYcptgyeAcZOgxxKU1NBVjAyRyHsNHLld-Ll0wG3BCpgbB8v9Ky-CpLvkh0W2SGnPXy29o/s1600/skate.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIxT_qHApgeDnLAib1vfxiGJPHk9Bz-OrfeFW6NCxNRnEwiphQ-QHBoU42lVxIDI6iU9f4YhQYcptgyeAcZOgxxKU1NBVjAyRyHsNHLld-Ll0wG3BCpgbB8v9Ky-CpLvkh0W2SGnPXy29o/s1600/skate.png" height="640" width="640" /></a></div>
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<span style="color: rgb(13.330000%, 13.330000%, 13.330000%); font-family: 'ShadowsIntoLightTwo'; font-size: 13.000000pt;">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.
</span><br />
<span style="color: rgb(13.330000%, 13.330000%, 13.330000%); font-family: 'ShadowsIntoLightTwo'; font-size: 13.000000pt;"><br /></span>
<span style="color: rgb(13.330000%, 13.330000%, 13.330000%); font-family: 'ShadowsIntoLightTwo'; font-size: 13.000000pt;">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.
</span><br />
<span style="color: rgb(13.330000%, 13.330000%, 13.330000%); font-family: 'ShadowsIntoLightTwo'; font-size: 13.000000pt;"><br /></span>
<span style="color: rgb(13.330000%, 13.330000%, 13.330000%); font-family: 'ShadowsIntoLightTwo'; font-size: 13.000000pt;">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.
</span><br />
<span style="color: rgb(13.330000%, 13.330000%, 13.330000%); font-family: 'ShadowsIntoLightTwo'; font-size: 13.000000pt;"><br /></span>
<span style="color: rgb(13.330000%, 13.330000%, 13.330000%); font-family: 'ShadowsIntoLightTwo'; font-size: 13.000000pt;">Please help us spread the word about this rare syndrome. For more information, you can check
out www.prisms.org, an excellent resource </span><br />
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Anonymoushttp://www.blogger.com/profile/12615585233433171724noreply@blogger.com1tag:blogger.com,1999:blog-7615499359170206087.post-22172876254871588102014-11-16T01:17:00.000-07:002016-02-15T21:10:49.474-07:00Low<div class="separator" style="clear: both; text-align: center;">
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<br />
<br />
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 Smith-Magenis Syndrome awareness is so important? Because it's so goddamned hard.<br />
<br />
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.<br />
<br />
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.<br />
<br />
She's 7 and she can flip over a futon. <br />
<br />
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.<br />
<br />
Who the hell cares, really?<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
Sort of.<br />
<br />
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?<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<blockquote class="tr_bq">
<br />
"I sorry mommy. I so, so sorry. Please forgive me. I no do it again."<br />
"I know, baby, I know..."<br />
"Mommy, I not a baby. I a kid."<br />
"You're right, my big, big kid. I forgive you."</blockquote>
<br />
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.<br />
<br />
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.Anonymoushttp://www.blogger.com/profile/12615585233433171724noreply@blogger.com0