One Year

Source:  One Year    Tag:  smith magenis syndrome pictures


As I sit here typing, I'm looking at my empty coffee cup. I've already finished my second cup and it's only 6:42am. Finleigh is lying on the couch, happily watching TV, surrounded by things she'd thrown around during her meltdown this morning. The bucket of pencils and colouring stuff. The pictures on the fridge. Her brothers' school books. Anything, really, that she could get her hands on. She's been sent to her room twice. I'm grateful that she's finally calm.

I woke up this morning at 4:18am to her having a coughing fit right next to me in my bed. Her little body shoved up against mine as I lay as close to the edge of the bed I could get without falling out. Brian's working nights, so two-thirds of the bed was empty.

I was so tired last night, that I was asleep by 9 pm, so 4:18 am didn't seem so ridiculous to be waking up. Nearly eight hours of sleep… more than I usually get. I'll take it.

This is all rather atypical for us. I never go to bed that early and I never let Finleigh get out of bed so early, but sickness always throws us a little out of whack. The meltdown, however, not so atypical. Not so rare.

Today is a milestone for us, of sorts. Today is the first anniversary of Finleigh's diagnosis. One year ago today, I received a phone call that would change our lives.

"Smith-Magenis Syndrome," is what the young woman with the caring voice said on the other end of the line.

I wracked my brain to think of any questions I could ask, not wanting to hang up the phone. Not wanting to let her go. But I finally did. I texted those close to me to share the news. I called Brian, who was at work. We talked and texted and talked and texted for the rest of the day. I called my mom. And my sister. I spent hours online researching.

And then I cried. I cried off and on for days. And then weeks. And then months. The grief was never far away. The tears never more than a couple seconds away from my eyes.

I put away my school books. I went into auto-pilot. I restarted this blog. I went on anti-depressants to help my anxiety.

And now, a year later, we've adjusted. We've found support, emotional and physical (not that we didn't have it before, because we did, but now we have more). I've met many individuals who have children with Finleigh's syndrome. This year has been hard, but it has also been therapeutic. Meeting these people who understand our lives. Knowing that we're not crazy when we describe Finleigh's odd behaviours. We are not alone.

We've come a far way. Last year, we went to the big city during spring break to meet with the geneticist and learn about our new reality. This year, we're going to the big city on spring break to meet with specialists to talk about her sleep apnea and her lazy eye. Both things were being rather overlooked until we got our diagnosis.

And now Finleigh is asleep again. Still lying on the couch with the TV on. Her little body so confused and unable to sleep like the rest of us.

I'll spend the day trying to focus on the gains that she has made and not all the deficits that she continues to fight against. For all the hard things, this child brings us great joy and makes us laugh like crazy.

Happy anniversary to us.