Friday, November 17, 2017

SMS Awareness Day - 2017

Smith-Magenis Syndrom

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

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

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

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

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

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

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

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

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

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


  1. You and your whole beautiful family are a testimony to the truth that love endures all. I admire you all more than I can say and pray with all my heart and soul that you will always have all the support you need, especially Sweet Bug.