“Do not let your fire go out, spark by irreplaceable spark, in the hopeless swamps of the approximate, the not-quite, the not-yet, the not-at-all. Do not let the hero in your soul perish, in lonely frustration for the life you deserve, but have never been able to reach. Check your road and the nature of your battle.
The world you desire can be won. It exists, it is real, it is possible, it is yours.”
Russian-born American Author
Saturday morning, she sits by her son’s bedside, anticipating what will happen next. For the last few days, she has been struggling with the changes in her six-year-old son, Ben. At three and a half years old, he was diagnosed with severe anxiety and sensory disorder. Over the next three years the diagnosis grew to become a dual diagnosis of motor dyspraxia, AD/HD and recently, Asperger Syndrome. The constant despair, the extreme mood swings have taken a toll on Lydia. Her son, who was once an affectionate and happy child, is slowly slipping away before her eyes. But every now and then, something beautiful happens and everything feels right with the world.
Ben is slowly waking up. Lydia watches him with bated breath. Will there be a storm this morning? Ben sits up and accidentally elbows Lydia on her side. “Sorry, Mum. I’ll move a little,” he looks at her and gently smiles. “Is it a school day, Mum?”
Lydia sees the smile. No storm; it’s a pure innocent joy and for the first time in months, it fills her heart with tenderness. She knows moments like this are extremely sporadic. She mentally records the moment instinctively – his beautiful grin, his eyes seeing her as his mum. This recording will energise her for the next six months, at least.
“No, darling, today’s not a school day,” she smiles back at him; her son who, for this moment in time, has returned. There are no shadows, no windstorm, just him, cheerful on a Saturday morning.
“Can you read to me?”
Ben, currently in Year 1, is just beginning to read ever since he moved to a new school. Even though he has a very high IQ, without a supportive school environment he has difficulty learning, more so than other students his age. Asperger Syndrome (AS) is characterised as one of the autism spectrum disorders1, but unlike autism AS does not show a marked delay in language development or cognitive development2. So, to most people who are not aware, Ben would be considered a ‘naughty’ boy who just needs some serious discipline.
Lydia picks up a book and Ben snuggles next to her. This is the icing on the cake, her son close to her, unafraid of being touched. Another symptom of the Asperger Syndrome and for a mother, affection is her biggest reward. So this is a moment of pure bliss, just the two of them on his bed, sitting next to each other, warm tenderness blankets them as mother and son. Lydia makes another ‘recording’ and her heart is full to the brim.
Later that afternoon, she recalls what had happened that morning. Tears fill her eyes as she recounts to me how beautiful it was to hold her happy child in her arms.
“With Ben, the times that he’s happy are so few and I really, really notice them.” Lydia has also a four-year-old daughter, Ana. “With Ana, there are lots of tender and happy moments to savor. Sometimes she’s happy and sometimes she’s sad. That’s the way she is. But when Ben is truly happy, it’s rare and fleeting. When I see it on his face, it’s a moment. And I just look at him and smile back and then it’s gone. The moment is gone, but not the memory. I hold it, store it and it lasts so much longer.”
Most mums have the luxury of being able to choose from many moments of joy with their children. Every day, their child will reward them with a series of small delights, but for Lydia, her reward is more minute, so she has had to learn to be very still. This is the only way she can grab hold of the fleeting warmth that can only be detected in stillness.
After giving birth to Ben, Lydia was ill for about a year. Complications during labour and a ruptured uterus lead to Lydia being told by her doctor she would not be able to carry another child. This was a devastating blow to her and her then partner, Tanya. But after two years, they decided to have another child and this time, using the same sperm donor, Tanya carried their second baby. Lydia felt grief stricken, ‘ripped off’ and guilty for not being able to ‘carry’ Ana, especially since their original plan was that she would be the one to give birth to all their children. But mostly, she felt guilty, responsible for the multiple disorders that Ben has to ‘endure’. This is especially felt because Ana does not have any of the problems that Ben has. Her pain is firmly rooted in her heart. There is a tug-of-war that has been silently waging within Lydia and she has been trying to find her ‘self’, her peace since Ben’s birth.
During Ben’s first year in his old school, Lydia felt ostracized and ridiculed, not openly but worse, in the quiet whispers and murmurs in the school yard as soon as she and Ben walked in; being excluded from birthday parties; in the sideway glares she felt attacking her already-low spirit. No one spoke to her, she had no friends. Ben was branded as a ‘naughty’ child and Lydia was perceived an inadequate mother.
For a year, she battled Ben’s multiple disorders with grit and courage. There were many days that Ben fought very hard not to go to school. He knew he didn’t belong. He wasn’t happy. And his misery played havoc with his mind.
“You have to find a different school for me,” he said with insight one day.
Then there were days when he predicted exactly what will happen at the end of the day. “I’m going to be naughty today. So expect me to be suspended. Again.”
The boy was only five then and he knew that he was different, describing himself “naughty” and “weird” because these were the names he’d heard.
There wasn’t a day that Lydia didn’t get a phone call from the school about Ben. And it was never good news. It became part of her day, part of her life. Her misery and Ben’s became one and the same. Sadness carved its way through both of them and settled in Lydia’s heart. The world seemed to have lost its light, Ben was steadily disappearing into his own unhappy world and darkness cloaked Lydia’s happiness.
Their silver lining came in the form of a much smaller school with a supportive community. Ben and Lydia (along with Ana and Tanya) were welcomed and accepted. It was an unknown feeling for all of them.
On his first day, Ben stood with the group of students during the morning assembly. Lydia, with her emotions running and thoughts scrambling, stood close by among the parents; this in itself was entirely a new experience for her. The principal introduced Ben to the group of less than 40 students and formally welcomed him into their school. Lydia was nervous, elated, worried and hopeful. All she wanted was a safe and fair environment for Ben, to find the best place for him to learn and grow.
Six months into the school year, and Ben is now thriving in his studies. He wakes up a little happier and looks forward to school. Every now and then the storm resurfaces but in his new school environment, Ben receives a lot of support.
“I read today, Mum, to one of the mums at school!” he reports excitedly.
Another moment, another treasured memory. For Ben, it’s a privilege whenever he gets the chance to read to the mums – he is the same as everyone else.
For Lydia, she gets to hear all about the wonderful things he’s doing at school. For the first time, in many months, Ben is enjoying the adventure of discovering the ‘outside world’. Lydia no longer receives phone calls from the school on a daily basis. And she, too, is receiving support from the teachers.
They’re all finding their own ‘blue sky’ for the first time. Ben recently stood in front of the entire school holding a song card. For most students, this might just be a small act but for Ben this is a massive step, a boundary-breaking moment. He was visibly nervous and Lydia held her thumping heart in her throat. And at the end of the song, Ben gave a huge smile and later said to his Mum, “I did it, Mum! I was so scared, but I did it!”
Lydia is also starting to find her own ‘happy self’. She has given herself permission to enjoy her own company, to find pleasure in working and appreciate that she is not just a mother but also a woman with many dreams.
“When the kids are away on some weekends, I have just recently started to have friends over for dinner or have my sister come over for a visit. I never used to go out. I always felt guilty. I just didn’t think that I had the right to have time to myself or enjoy something for myself when things are so hard for Ben.”
Lydia finally understands that looking after herself is just as important as selflessly caring for her children. Taking time for herself replenishes her own emotional energy to care for Ben, to be a better mum for both of her children. Work plays an important role in fuelling her own energy.
When asks what makes her a mother, Lydia pauses. Her eyes smile and she slowly takes a deep breath.
“Determination. This is what drives me. Being a mother is what I do and this is where I’m meant to be. It’s my here and now, my priority – it comes before anything else in my life. Being a mother has taught me to be still, allowing me to be in the moment with Ben and Ana. I love them. I want them to know that no matter what happens or what they become they are enough. Just as they are.”
And Lydia is certainly just as enough for them.
“A gender-equal society would be one where the word ‘gender’ does not exist: where everyone can be themselves.”*
I’ve always been aware of gender conditioning and actively tried to combat any lingering prejudices or stereotypes in my own parenting, even down to encouraging dolls with my boys when they were little. It’s great to read people writing about gender issues they’re experiencing with their kids. For too long these subjects have been discouraged or silenced. I’d love to publish some more creative writing on this topic, especially if you are struggling with a child who actively tries to move away from gender normative preferences. A society where everyone can be themselves – thanks Gloria for those aspirational words.
* Gloria Steinem