Autoinflammatory mom – Living with a chronically aching heart.
I think the memory of the moment you become a parent is one that sticks with us forever. No matter who you are, the birth of your child is one that changes you. I remember Daniel’s birth so vividly: it wasn’t peaceful or serene—it was hard and terrifying.
Oddly, before we entered into this crazy world of rheumatology and autoinflammatory—before he had any issues or symptoms—his birth was almost a sign of the journey we were about to embark upon. I was waiting in antenatal for him to come and at 32 weeks, he did. His birth was far from ideal; because of his size and being premature, he was born in an operating room connected to the NICU. The table stirrups were broken. I wasn’t wearing my glasses or contacts so I couldn’t see beyond the pain and blinding lights in the OR. All I remember is the blur of hearing them tell me my boy was born but they needed to take him to NICU immediately. It was a sensation that felt like my heart was literally ripped from my body with this new little life and having no control over protecting it.
Since his journey with his autoinflammatory condition, we have had moments that have stuck in my mind forever, each another bruise on my chronically aching heart.
Moments like Macrophage Activation Syndrome flareups and the fear of losing him;
The moment we were told he had lung disease;
Moments like carrying him on my back at all ages because he couldn’t walk from the pain of arthritis;
Moments like pinning him down as he screamed and flailed as I had to give him his injection that would allow him to function throughout the day, every day;
Moments of dealing with the side effects of steroids—the behavioural issues, the weight gain, the sleepless nights;
Moments of watching him lie in a hospital bed as he slept and listening for every sound of the monitor; watching the rise and fall of his chest while he breathed and refusing to sleep so I didn’t miss anything.
Recently, at his last hospital infusion, his IV insert didn’t go well. He had been so brave but it wasn’t working after three painful pokes. He was so upset and screamed, “I don’t understand why I even need this! I feel normal. I feel well. I’m fine.” Trying not to hold back tears I reminded him that, “you need to keep taking your medicine so you stay fine.”
But what actually happened in my mind in that moment was the flood of memories that came pouring back—the trauma of seeing his struggle and fighting with and for him to keep him alive and well. Because although he feels chronic pain in his bones, I have felt chronic pain in my heart. Just like his body remembers and responds to pain, my mind and heart do too.
I heard a young adult with JA talk about their journey and mention their parents. They made a comment like, “It’s not your parent’s struggle, it’s yours.” The comment was meant to encourage other kids but when I heard it, my heart felt a sting. Because the truth is, parents experience the pain of their kids in a totally unique way. Yes, we can’t literally feel your pain . . . but we can see it, and so we feel it.
For my child, his pain started before he could talk. He couldn’t form words yet but I could speak his pain for him. Because I watched, monitored, tracked, and listened—even before doctors could tell something was wrong, I felt it. Some things about his childhood he won’t remember because he was too young to remember. But I will never forget it.
As parents of children with chronic rheumatic disease, the roller coaster of emotions we feel has an impact on us:
The invisibility of our child’s disease;
the constant fight for recognition and understanding;
the need to support them but not crowd them;
to protect them but not let it consume them.
It’s all a delicate balance and if you’ve been on this journey with your child and you’re like me you may feel like you are living with a chronically aching heart.
The ache is always there—it doesn’t go away—yet it’s part of what makes us strong voices and powerful advocates. Because even when it’s dull, we still feel it. We are still fighting. We want change and recognition for our kids and their diseases, and we will not let it go unnoticed.
But the truth is we are the voices of progress: we are improving the lives of not only our kids but the kids coming after them. So, when you feel the ache, don’t ignore it: acknowledge it and speak it. Your child’s pain may not be your struggle, but yours is, and often they are linked.
Stay strong and advocate like a mother!
