Michelle
“After our first daughter Frankie was born, we had five pregnancy losses trying for a second. We were about ready to give up but then I finally got pregnant again and it stuck. At 33 weeks, on my last day of work, I noticed the baby wasn’t moving much, so I called my midwife. Within 90 minutes of walking into the hospital, Goldie was born by emergency C-section. She was tiny, under four pounds, but she seemed healthy. ‘She’s doing beautifully,’ the doctor said.
That night, though, Goldie started having trouble breathing. Then came the seizures. And, as our time in the NICU grew longer, it quickly became clear that our lives were never going to be the same. After the MRI, I remember having a horrible conversation with a neurologist who was trying to explain the trauma to Goldie’s brain. She kept saying, ‘If she survives...’
If she survives, she’ll never walk. If she survives, she’ll never talk. My husband Jeff and I just wanted to bring our daughter home, but it really wasn’t clear if she was ever going to be able to leave the NICU. Finally, after four months, we did get to come home. And everything got even harder.
We had limited home nursing support at first, and it was a full-time job just keeping Goldie alive. She can’t swallow, so she was always in danger of drowning in her own secretions. It was so, so stressful. Neither of us could sleep. We had to call in every ounce of help we could get from anywhere: nurses, specialists, family, friends, the community support team at BC Children’s Hospital, the incredible people at Canuck Place. Goldie’s team must be almost 100 people at this point, and it’s an insane amount of work to coordinate them all. My background is in tech industry project management, and I sometimes joke that my new job is CEO of Goldie.
I was always so career-driven, even after Frankie was born. But once Goldie came into our lives, what’s important in life became crystal clear. Goldie has changed our lives in the most beautiful way and shown us how to be present for the things that really matter.”
Jeff
“When our daughter Goldie was born, my wife Michelle and I immediately shared a story on social media, welcoming her to the world, celebrating.
Then things changed fast. Suddenly, we were in the NICU, struggling to keep Goldie alive, learning about the lifelong special needs she’d have, even in the best-case scenario. And, the whole time, our phones were blowing up with family and friends congratulating us. It was impossible to have the hard conversation with everyone.
So my quick fix was to just post a story every day. A little day-in-the-life video. Here’s the news. Here’s how we’re doing. Hit everyone at once. It was really just meant for our closest circle, but my page was public and it started taking off. We learned there were so many special needs families out there, waiting for someone to give them a voice.
Now Goldie has like ten million plus views. It’s wild. I open my inbox and there are 100 messages, some from parents asking for advice, others just thanking us for sharing. Of course, there are also the horrible ones.
‘Pull the plug. Sometimes it’s better to let go.’
It’s hard to understand how anyone could say those things. About a child, especially. Those words could break a person, but we refuse to let them break us. Instead, we double the amount of good energy we put out into the world. Because negativity is loud AF, but positivity and kindness are so much louder.
I remember being out with my older daughter Frankie in Edmonton and a store employee came up to us. She looked at Frankie and said, ‘I know you, you’re Goldie’s big sister.’ Frankie was thrilled. She loves her sister so much and she’s proud that we’re making a difference. Moments like that remind me that we’re not just shaping how the world sees us, but also how we see the world. We’re choosing who we’re going to be.
We choose kindness, love, and to be helpful. Just by being visible and advocating, we’ve helped other families get funding they’d initially been denied, find support they didn’t know was available, or just feel like they belong. We choose this.”
Jeff & Michelle
“Our lives have changed a lot since Goldie arrived. There’s so much uncertainty, so little stability. It puts a strain on everyone. We’re all in therapy. Individual therapy, couple’s therapy, play therapy for Frankie. Honestly, Goldie’s holding it together better than the rest of us. She’s the strongest of us for sure.
We try to keep our healthy habits up. We hydrate. We work out every day. A little bit of movement goes a long way to help keep it all together. But we also take turns unravelling and falling apart.
It can be especially hard on Frankie. She’s such a good big sister, and it’s such a special relationship they have. They play together in the morning and it’s incredible to see how they’ve learned to communicate, even though Goldie’s non-verbal. But there will also be nights when Frankie wakes up and we’ll all be gone. Her grandma will be there explaining that we had to rush Goldie to the hospital in an ambulance. Again. When Goldie has an emergency, the world stops on a dime.
We used to try to make up for it by taking Frankie on extravagant adventures whenever the stars aligned and we could manage it. But, in truth, Frankie is happiest on the days we’re all together, calm, just doing nothing. When we can watch a movie, or do an art project, or just play outside. We’re all happiest then.
It’s the days we take inflatable couches and kites and snacks into a field and spend the day there. No stress, no big plans. Just four humans, two dogs, and a warm breeze. Or the moments when we have an impromptu dance party in the kitchen. Or when we cuddle up together to share our roses and thorns at the end of the day. It’s the moment we walk into the living room and find Frankie, Goldie, and our labradoodle Artie all curled up together asleep in a big pile on the floor and it’s just so cute we can’t take it.
We’ve gotten good at finding these priceless gems in the chaos. We’ve gotten good at living in a world that’s out of our control. We’ve gotten good at letting Goldie take the lead, and there’s nowhere we’d rather be than wherever she takes us.”
