I remember when I was pregnant with my son Brody, speaking to a colleague on a car journey about his daughter who is disabled. I can remember exactly where I was. I can remember just how full of love he was. I can remember thinking – this could be me. I had a feeling come over me that I might one day be able to relate to his story – and I was right. Has that ever happened to you? I never expected this life, but in some ways, I knew it was coming.
There were no signs during my pregnancy that Brody would be disabled. We decided that we would opt not to have pregnancy screening tests – not that these would have told us anything about his conditions anyway. I often wonder if expecting parents know that screening tests don’t tell you everything about your child’s genetics. That they can’t. Even now, science and doctors can’t tell us everything about Brody’s genetics. Except of course that he is wonderfully unique, which in a world full of carbon copies I think is a beautiful thing.
Brody McAteer was born an absolute delight. He smiled and laughed at everything and was – still is – the most happy-go-lucky child you could meet. But his development was slow. He vomited all the time. He struggled to eat anything that wasn’t pureed. He lacked gross and fine motor skills. And there was no babbling whatsoever. As a first time Mum I tried to listen to the reassurances of others that I was overreacting and overthinking, but I knew in my gut that he wasn’t like other children. I observed them all the time, particularly at baby and toddler classes – and I was amazed by the things that they could do, each time highlighting the things that my son couldn’t. My heart would sink every time I had to meet the Health Visitor to go through the checklists in his red book.
Still, nothing happened. No one said or did anything until he was around 21 months old and was hospitalised with seizures. During that hospital stay I met a paediatrician who would later become part of Brody’s ‘team’. He seemed concerned about Brody’s development and the size of his rather large (okay, off-the-red-book-scale) head. That’s where our SWAN journey began – into the unknown. No conclusive tests. No umbrella diagnosis. No prognosis. A million questions, heart-stopping anxiety and never, ever any answers.
We are ten years in to parenting Brody and it has been a rollercoaster. We have some diagnoses (epilepsy, autism, hypermobility) and a possible future rare diagnosis that’s currently sat on a researcher’s desk in Paris (something to do with the SLITRK2 gene). I look back and think of all that we – all that he – has been through and I can honestly say that we’ve been up, down and spun around. The highest of highs and the lowest of lows.
Although I wish I could go back to the start of this journey and tell myself that it would be okay, I wouldn’t go back to beginning. When you start walking this path, the limbo and unknown is terrifying. You go to a dark place that is lonely and sad.
But when you find your feet, your tribe and acceptance, you step into a world that you can’t imagine not being part of. Yes, it is hard at times, but it is also rewarding in ways that are hard to describe. On Brody’s 10th birthday this year, when he blew out the candles on his cake for the first time, I felt like I’d won the lottery. The wins are big, no matter how small. And life is precious – we truly understand that.
What could I tell you about Brody?
I could tell you that he’s strong.
I could tell you that he’s happy.
I could tell you that he’s perfectly imperfect.
I could tell you that he’s my greatest teacher and biggest lesson.
I could tell you that he’s many amazing things.
My boy is 100 % pure, unfiltered sunshine – and I am so grateful that he is mine.
This path is quite the journey. There are constant battles and many unknowns. But like Vincent Van Gogh said:
Normality is a paved road: it’s comfortable to walk on, but no flowers grow on it.Vincent Van Gogh
We are surrounded by beauty.
Hello! My son has also been diagnosed with gelastic seizures, autism, and hypermobility. He was diagnosed with the seizures at 18 months, though they started earlier. They are well controlled. He got his autism dx at 3. He had his first dislocation when he was only 3 months old. He was not diagnosed with macrocephaly but was in the 90th percentile for his head circumference in utero.
I was diagnosed in my youth as hypermobile , had seizures as a child and struggle with ADHD. My father is also hypermobile, and has what was historically called “Asperger’s Syndrome”. He has an unusually large head.
I saw that you were looking into a possible genetic link and would love to know more about what you’ve found. Do you have an email or other source of contact I could reach out to you on?
Thank you for taking the time to blog your journey. Finding it has made us feel a little less alone!
Hi. Drop me an email Laura_A_Rutherford@yahoo.co.uk xx