2018 Gift of Time Gala Family Speech
On Saturday, October 20th, 2018, Canuck Place mom, Cherie Ehlert’s shared her story of meeting Canuck Place. Her daughter, Charlie-Anne, has spinal muscular atrophy and has been a part of the Canuck Place family from a young age.
Thank you, Cherie, for your bravery and your impactful words. Cherie’s speech, in full, below.
My name is Cherie Ehlert and I am the mother of Charlie-Anne.
This is my, ‘How I met Canuck Place’ story.
My daughter Charlie-Anne was born June 22, 2009, after a very uneventful pregnancy and delivery. Her dad, Matt and I were instantly in love, and, totally shocked when the doctors handed me a teeny tiny baby with a full head of red hair! She was absolutely perfect.
As new parents, Matt and I worked hard to figure things out as we went. We were in awe of our daughter’s expressive eyes, and her old soul.
One night, when Charlie was around a week old, Matt was at work, and Charlie was curled up all teeny tiny at the end of the couch sleeping and I was watching ‘My Sisters Keeper’, a movie about a young girl who dies of cancer. I was bawling. As a new and first-time Mom, it was so hard to watch, but I couldn’t stop. I was experiencing this movie from a new perspective and it rattled me to my core.
I messaged Matt suddenly fearful, “Nothing better ever happen to Charlie, I just couldn’t handle it, I would die.”
Matt recommended I change the channel and to stop worrying about things that weren’t going to happen. I stared at my perfect little girl at the end of the couch, and I felt so lucky to be her mom.
Days turned into weeks and weeks into months and suddenly Charlie was 4-and-a-half months old. She was such a calm and happy baby – always smiling and rarely crying.
Charlie was a little observer, I remember how I would prop her up on the pillows in my
room and she’d just contently watch me blow dry my hair and do my makeup.
She was so calm.
I recall a photographer commenting on how well she held her head up for Christmas photos. She seemed so strong.
At around this time, I noticed Charlie wasn’t bearing any weight on her legs. When I picked her up and tried to get her to stand a little with my support, her legs were like noodles and they would just splay to either side.
I would Google, “my baby isn’t bearing weight on her legs” and I would feel relieved in reading that all babies go at their own pace, so I shrugged it off. Charlie was such a happy baby, it was easy to think I was overreacting.
It was at this time that life changed, the head control the photographer commented on began to weaken. Charlie’s head would just start collapsing at random times.
Once I was sitting in a restaurant, Charlie on my hip and her head just collapsed and came millimeters from smashing into the tabletop before I caught her. Concerned and confused, I chalked it up to her being tired.
This started to happen more regularly at home. She was refusing tummy time and started dragging her head. However, she had recently discovered her thumb and it was in her mouth at all times, so we convinced ourselves that Charlie was just soothing herself and not wanting to be pushed.
It’s funny how the brain works. How your gut can tell you one thing but your brain wants to protect you and often takes a little more time to catch up to your gut.
Matt ran out one day and came back with a jolly jumper for Charlie. We placed her in it but she just dangled in it like a rag doll.
I was scared. Everyone assured me Charlie was fine and would say things like, “You’re so lucky Cherie, she’s perfect.” and they meant it, because like I said, she was so happy. How could this beautiful, smiling old soul have any issues? But we saw it, she was losing her head control.
Three days before Christmas we took Charlie to our family doctor for her 6-month shots. The doctor looked her over and was ready to send her off when I said, “She isn’t bearing weight on her legs, is that normal?” She asked me to place Charlie on the table and she checked her reflexes in her legs with a reflex hammer. And nothing. Not even a flinch. She looked concerned and told us Charlie would need to see a pediatrician and booked us an appointment for two and a half weeks later.
After a miserable Christmas day full of worry, we couldn’t wait another minute so we took Charlie to the hospital Christmas night, 2009.
During numerous blood tests, we observed that Charlie was feeling ever needle prick but her muscles weren’t reacting. We knew something was very wrong.
A short time passed and we ended up back at the hospital with Charlie sick with a cold. This is where we received a diagnosis we never wanted to hear: Charlie had Spinal Muscular Atrophy – SMA. Our beautiful, happy daughter was given a few months to live.
How do parents process this information?
We went home and cried for three days straight. I’d never cried so much in my life.
It was Charlie’s sweet smile and her “Why is everyone crying so much?” expression that got us to snap out of it.
It is at this point that we received an information package from Canuck Place Children’s Hospice. They invited us to come and spend two nights with them to get to know everyone and to learn about their program.
We initially refused. Suddenly we were eligible for palliative home care nurses and a children’s hospice… was this for real? Was this really our life?
One night, I ran out to the living room sobbing and telling Matt that I couldn’t sleep next to Charlie anymore because I was afraid I would wake up next to my dead baby beside me.
We realized we needed more help. We needed guidance to navigate this incomprehensible life that we were thrust into so we booked our stay at Canuck Place. We were nervous. We were scared. We were shy. We felt alone.
But within minutes of walking inside this beautiful, cozy environment, we experienced a new emotion we had all but forgotten: relief.
There is a warmth to Canuck Place that happens the minute you walk through the door. I can’t explain it. You feel safe. You feel comfortable and understood – embraced with open arms.
Our journey was chaotic and unfamiliar and Canuck Place held our hands and helped us navigate the unknown. Suddenly we could breathe again and focus on just loving and making memories with Charlie while she was here, instead of focusing on how it would be when she was gone.
Canuck Place took care of all of us. They fed us, initiated family activities and reminded us that there were counsellors and doctors that we could talk to at any time with any questions we had.
We met other families in similar situations, and as much as you don’t wish this life on anyone else, there is such a relief in knowing you are not alone. When we are at Canuck Place we feel ‘normal.’
The Canuck Place team; the nurses, doctors, counsellors, and the rec therapists helped us let go of the complicated and embrace the memorable.
And, when times are at their hardest, that’s when Canuck Place means the most.
Over the years, Charlie has been hospitalized 6-8 weeks a year, many times touch and go. And, every time, a doctor or a counsellor from Canuck Place has shown up to let us know that they are here anytime we need support.
Two years ago, I was hit by the worst anxiety and depression that I have ever experienced. I was barely functioning. I think that years of this life had caught up to me and I was collapsing under the weight of it.
I desperately reached out to the Canuck place counselling team and began seeing a counsellor on a regular basis who really helped me deal with what was going on, and today, I am so much better than I was.
It’s so natural to place the care of your child before yourself but Canuck Place gives parents like me permission to receive care too.
I would’ve never been able to afford this care on my own. Donors, like you in this room tonight, make this possible.
After many, many close calls, my Charlie-Anne is miraculously 9 years old now. She is in grade 4 and is the class clown. She loves Geography, Biology, and My Little Pony.
And she loves Canuck Place, her home away from home. When Charlie visits Canuck Place she thinks she’s staff now and parks her wheelchair behind the desk and tells me I should leave because she’s busy working. My beautiful happy baby has grown to become a beautiful happy girl.
I don’t know what the future holds, but I’m enjoying our miracle and I know that whatever happens, Canuck Place will support us.
To all of you here tonight, I want you to know that you are supporting an invaluable resource.
You are helping sick kids and their families live fuller, happier lives.
You are providing families a warm and safe place to lean on. A place where they can savour their time together and leave a lot of the heavy stuff to someone else. You are providing priceless memories that will last someone a lifetime and will be the light in some of their darkest days.
I’ve learned through friends whose children have passed away at Canuck Place that the family care does not end when their child passes away. Canuck Place continues to care for their families. They work together to create ways to honour their children and provide bereavement counselling and they invite them to all of their functions year after year, like family.
We are so fortunate we received that Canuck Place information package that day 8.5 years ago. It was absolutely life-changing.
Thank you, Canuck Place, for taking the reigns when we were lost and showing us how to truly live in the moment. We are so grateful for you.
And thank you from the bottom of my heart, the donors, who make this priceless and life-changing resource a reality for families like mine.