SnoDance!

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.

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.

Everything that was predictable happened.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Whatever.

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.

But I can't.

And I hate it so much.

Just another Sunday morning...

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.

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.

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.

I make my own breakfast and when she sees it? 

(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)

When she sees my breakfast she yells, "I DON'T WANT ANY FRENCH TOAST!!!!"

"I didn't offer you any french toast. I just made myself two pieces."

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.

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. 

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 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).

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. 

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. 

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.

We smile, but we're tired.

SMS Awareness Day - 2017

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I want. I want. I want.

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

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

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

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

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

I hope.

Happy Easter

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

Finleigh turned 10 in February.

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

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

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

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

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

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

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

How? Why? What???

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

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

Seriously, SMS. Seriously???

Oh, and Happy Easter.