What’s mom’s #1 job?”
“Keeping us safe” they respond, semi-irritated but in perfect unison. An answer they have spouted out hundreds of times.
They know the drill.
This line has been a cornerstone of our conversations anytime I need to explain why we are doing something they don’t love. For example, going to bed on time, shutting down screen time or lined up for flu shots. Mom doesn’t love to make you do something you don’t like, but more than making you happy, what’s her number one job! It works. And it’s true. Physical and psychological safety are my main priority. It’s not just a line. It’s my motherhood mission. Isn’t it for all of us?
So what happens, when things change and they grow and they face new challenges and you CAN’T always keep them safe. I can‘t protect him from the other kids at school who don’t understand why he doesn’t want to play soccer at lunch. I can’t make it easier to fit in at gym. I can’t make the backwards crossover drills at hockey less difficult. I can’t keep him totally safe. Safe from the judgment of others, safe from ridicule, safe from the emotional toll it takes to be noticeably different than other kids. I can help him build resilience. I can help him weather those storms. I can be a container for all the hard feelings that come with that. But I can’t ensure his safety.
It guts me.
If I’m honest, I know at some level this is true for every parent. On another, I know that having a medical condition that causes disability and that difference being obvious to others, will amplify this for him in a way that it otherwise wouldn’t. It’s hard. It’s painful. It makes me feel helpless and sometimes, on a down day, like I’m not fully fulfilling my role as his mom.
I slather myself in plenty of grace and forge ahead, but damn what I wouldn’t give to be able to trade places with him. Create more ease. Take it all away.
I remember growing up how important ‘fitting in’ felt. It was a top priority for me, especially in the junior high and high school years. Now, I have a son who I know will struggle to completely fit in. Who already struggles to fit in. I am constantly amazed by the creative and genius ways he compensates. Encouraging kids to create a band or join his ewok club, activities that are far less physically demanding but still keep him in the play. Despite these amazing compensatory strategies, I need to face reality too. He won’t fade into the background. He won’t go unnoticed. He wont be able to hide the ways in which his body won’t cooperate all of the time. And while I want to waive a banner for ‘kids with unknown muscles diseases’ proudly. Sign up for the walk. Be proud that this is who he is and this is our story. I equally struggle with the tugging wish that he could also just fit right in. Because I remember how important that felt to me. How important it still somehow feels in ensuring ease throughout years that come with enough challenges on their own.
We will embrace all the amazing beautiful things about our boy and this journey that we are undoubtedly destined to be on. And in between, we will feel the feelings. Acknowledge the pain. Cry the tears. Share our story. Because two things are true. He is amazing and brilliant and brave beyond belief. And this path is also painful. It’s not either/or. It’s both/and.
What’s my number one job?
Well I would still say it’s keeping them safe. But it might also include creating a world that is safe and inclusive for them. Building a village that supports me in the goal of safety, for my kids and others. And helping them develop the grit they will both need to keep being badass in a world that wants everyone to fit into a perfect box.
❤️