“Some days, I grieve the life I thought I’d have. This doesn’t mean I love my child any less; it just means my life isn’t quite what I thought it would be.” I shared this on Instagram and a stranger commented with her thoughts. For context, this post was about how difficult/sad/unnerving it is to see your child struggling. Avery had lost a lot of speech and some of the skills she had previously mastered. We were awaiting test results. We were scared and just wanted to get to the bottom of what was going on with her medically. I wrote that Avery had “regressed” in some areas and this person had ..read more

Does your person find phone calls and video chats challenging? Same. We created this Chat Chart as a tool to help keep the conversation flowing. In our latest aVERY BRIGHT LIFE podcast episode, we talked about communication skills—specifically phone conversations and video calls. Holding a conversation is a skill (comprised of many sub skills) which requires experience, practise, and repetition. Throw in developmental disabilities and speech delays, and this is tough.  We shared some of the strategies that have really helped Avery. It’s a work in progress. Practise may never make per ..read more

As I was jotting down noteworthy disability and diversity related days on the calendar that hangs above my desk, a light bulb went off! Why not create a digital version of this calendar? It’s gotta be faster and neater (my printing is awful) than this chicken scratch mess. And while I’m at it, why not share because surely other people in our community want to be reminded of upcoming awareness days. Whether they relate to your life or not, it’s nice to at least be aware. I’m sure I’ve missed a bunch of important DAYS, but I tried to include as many as I could. Definitely add notes and special ..read more

As mentioned in our most recent aVery Bright Life Podcast episode, here’s the running list of our favourite “CARROT” shows for younger kids and older viewers with developmental and/or intellectual disabilities. Before we jump in, what are Carrot and Candy shows? Well, we put entertainment into three categories at our house: Candy, Cotton Candy, and Carrot. There’s definitely a time and place for all three types of viewing, but if left to her own devices (literally), my child would happily consume “Cotton Candy” YouTube shows all day, err day. I mean, truthfully, so would I! I’m no stranger to ..read more

When our daughter was diagnosed with a rare chromosome disorder, it came as a complete surprise. Doctors didn’t know back then, or at least it wasn’t mentioned to us, that epilepsy is associated with her chromosome deletion. So, when she had her first seizure at the age of three, we were blindsided. The majority of Avery’s seizures happened at night and many were status epilepticus seizures. These are seizures that last for 30 minutes or longer and often require medical intervention to make them stop. It took about a year, but our neurologist finally figured out the best combination of anti-se ..read more

Trauma is trauma, mama. It’s not just something that affects mothers, but I’m addressing mums because I understand the unique stress that mothers of disabled or medically complex children can experience. In our most recent podcast episode (Episode 85), we dive into the distinction between Post Traumatic Stress and Chronic Traumatic Stress. And is “Chronic Stress” even a thing? (YES, it is). But I’ll leave that for the podcast, but let’s get one thing straight – our kids are not the source of our trauma. Our kids are perfect, and we love them immensely. Trauma develops when we find ourselves po ..read more

You may or may not know (I’m terrible at self-promotion) that Avery and I have a podcast called, The aVery Bright Life Podcast. We started recording during lockdown to keep busy and as a way for Avery and I to connect by doing something creative together. Is it perfect and profesh? Not really. But do we get our message across in a relatable, accessible way? I hope so. Over the past two years, we’ve shared stories about Avery’s chromosome deletion/duplication syndrome and how that presents itself in her life, and ours. We’ve talked about epilepsy, speech disorders, relationships, ableism, the e ..read more

This is a repost inspired by my daughter’s recent tumble down our basement stairs. I shared photos on Instagram and it reminded me of this story from 2012. I thought I’d dust it off and share it again here. View this post on Instagram A post shared by aVERY Bright Life (@lisathornbury) Stair Scare (Originally posted March 2012) Falling down stairs happens more often than you’d think. Accidental falls, including down stairs, sends 1,800 Canadians to the ER every day. Source My friend “Sarah Sorebottom” (not her real name LOL!) currently holds the record in our friendship circle for s ..read more

Here are a few stories from the blog archives childhood birthday parties—specifically how it feels when your disabled child is excluded. But also how wonderful it can feel to finally receive an invitation. (Sorry! The photos are a titch blurry. They were taken back before cell phones had decent cameras. My daughter Avery is six and has never been to a children’s birthday party. She understands what a party involves. She’s had plenty of exposure to birthday cake, candles, balloons, ripping open birthday wrap, and whooping it up. But only ever with family at this point. I’ve seen party in ..read more

My friend sent my daughter an invite to her kids’ birthday party. She knows Avery doesn’t get invited to many parties, so she included her understanding how much it would mean. When Avery got the invitation she opened it slowly and expectantly, peeling back the envelope like Charlie unwrapping the foil of that last bar of chocolate, hoping to find a golden ticket. News of a party was a golden ticket to her. She circled the date on the puppy calendar in her room and literally counted down the days with red sharpie Xs. She told everyone at school/at the grocery store/in her dance ..read more