I never thought I’d say this, but social media has really become a lifeline for me, especially as a mum dealing with everything going on with Oakley. I used to think social media was just for keeping up with friends or sharing the odd family photo. But now, it’s so much more—it’s where I’ve found support, understanding, and a bit of sanity.
One of the biggest surprises for me has been connecting with families from all over the world. I’ve talked to mums and dads from places as far away as New Zealand, who are going through the same kinds of things. It’s amazing how small the world feels when you’re sharing stories with someone on the other side of the globe. Knowing there are people out there who truly get it makes all the difference.
I also joined a Facebook group for families with kids who have Apert Syndrome, and it’s been such a blessing. The group is full of parents who know exactly what we’re going through. It feels so good to share our struggles and little victories with people who understand. When one of my other kids gets sick or I’m having a bad day, I can vent in the group without feeling judged. It’s a place where I can be completely honest, even about things I can’t say anywhere else.
I was even asked to write a book about our journey. While I was flattered, I’ve found that social media feels so much more like a real conversation. A book feels like I’m talking at people, but social media lets me talk with people. It’s like a chat with friends, and it feels more real to me. Whether it’s messages of encouragement, advice from someone who’s been there, or just knowing that you’re reading this and supporting us in your own way—it feels personal.
I feel so blessed to have found a way to shine a light on what medical families go through. It’s important to me to build awareness for others in similar situations, to show what it’s like to build a beautiful life that may be quite different from the norm, but beautiful nonetheless. Every day is a new challenge, but it’s also a chance to show the world that life doesn’t have to fit into a perfect box to be meaningful and full of love.
There’s something so freeing about being able to share openly and knowing the people reading your posts have been through similar things. They don’t just sympathize—they understand. They’ve walked in my shoes and offer advice, encouragement, or just a virtual hug when I need it most. Social media has given me the chance to not only receive support but to give it as well, and that’s something I’m incredibly grateful for.
What I love most is that these connections make me feel less alone. On those tough days when it feels like no one else understands, I can go online and find a whole community of people who do. It’s like having a group of friends who are always there, no matter the time of day or night. And together, we’re able to show that even though our lives may be different, they’re still filled with joy, love, and hope.
And let’s not forget the fun side of social media too! I’ve laughed out loud at memes that perfectly capture the craziness of being a mum and found joy in seeing other families’ happy moments. It’s a reminder that even when things are tough, there’s always something to smile about. It’s these little things that make our journey feel just a bit lighter, and remind me that our life, while different, is just as beautiful.
Social media has opened my eyes to the power of connection. It’s shown me that no matter how tough things get, there’s a whole world of people out there ready to support, uplift, and share in this journey with us. And for that, I’m so grateful. It’s a space where I can be honest about our challenges, celebrate our victories, and know that I’m helping others see that they’re not alone.
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