Every family develops dynamics over time- based on birth order, personalities, external stressors, etc. when one of the members of the family has a chronic illness, the dynamics can be skewed in ways that can become unhealthy in the long run in order to operate in the immediate.
Samuel is doing better overall than he’s ever done. We’ve had rough days, days that stir up latent anxieties simmering below the surface that come hurdling into our throats when his mood or behavior tastes familiar, and we recall older days when the behavior was so unpredictable that none of us felt truly safe in our own home. But as a whole, he’s doing so well. I force myself to remember some of the darker days to contrast how well he’s doing now- but the dynamics, the structure of the family, the codependent tendencies linger- and pushing back against what has been our norm for so many years is a daunting task.
For many years, life in our home was survival in a war zone. He was imprisoned in his illness and the rest of us became collateral damage by default. My younger children learned to both revere and fear him- never sure which mood would surface and if they might become caught in the crossfire. When he wasn’t stable- not properly diagnosed, nor properly medicated and treated- his behavior was often violent and aggressive. My son Asher was often the focus of his rage, and if he wasn’t, then I was. Many many days I would tell the younger three to run to my room and lock themselves in while I worked to calm the volcano of mood explosions and keep all of us safe. That kind of chaos means that simple family things such as delineation of chores and help never happened. I would create chore charts with all of the hope of a fresh spring day, and within days, the volcano erupted again, and the workload fell to me as the younger ones sequestered themselves out of the reach of aggression.
The result of living in the moment day to day for years on end means that I didn’t have practice parenting over time- I didn’t learn as I went- to delegate work load, dole out appropriate discipline, and create strong boundaries. I’ve come so very far- we all have- but I am acutely aware that my kids don’t support the running of the household at the level I believe they should. With Samuel’s stability, I’ve been able to enforce more structure and more boundaries- but as foreign as it is for them- it’s equally strange to me. I’m not used to living a life that is planned out past today’s activities- save for doctor appointments, therapies, and the occasional fun outing. I have become accustomed to making plans and having to cancel them, or asking for help around the house only to be left doing it alone as everyone hides in their rooms. I want to get better at this- I want my kids to get better at this- I know it’s my job to prepare them for life outside of my home, and when I think of all they have left to learn, sometimes I feel the crushing weight of failure. I remind myself that comparison of our family dynamic to the perceived dynamics of others is not only ridiculous, but toxic, and that we have struggles and hurdles that other families don’t have to take into account- and to remember how far we’ve come, how much better we’re getting at operating in a more healthy way- but it nags at me.
I wonder when Asher will need therapy for feeling as though I didn’t protect him the way he needed me to, or when Tucker will finally express that he feels that Samuel gets the most attention, or when Ivy will get angry at me for being exhausted at times when she wants my energetic attention. The reality is that we all fail our kids somehow- often in ways we aren’t aware of- needs they have that they are unable to express that aren’t met and create wounds- life is like that for all of us… so I try and talk to them- to let them know I’m aware of these dynamics, and aware that I haven’t done it all ‘right’, or even to their expectations- that I see their hurt and fear, and that I’ve shared the same hurt for them, to acknowledge that life with a chronically ill sibling feels so unfair- and that it can be confusing to both adore and fear the same person. My prayer is that those conversations will go down deep and work as an inoculation against bitterness or anger festering inside of their souls. I want to believe that the struggles we’ve endured will create strong character and incredible compassion- but I’d be lying if I said I wasn’t worried at times.
I think that this is an issue for all families with a chronically ill family member. It changes everyone. It alters the fabric of life for everyone woven into the unit. I have no answers other than to encourage those of you in the same place we find ourselves to talk and talk and talk. To choose to call out the pain and injustice and hurt- and give it a place to sit- without judgment, fear, or defensiveness. It’s hard, it sucks, it’s easier in the moment to avoid those conversations; but somehow, I believe that the ache of the conversations today is far easier than a lifelong sentence of bitterness and a fractured family. If you find yourself here- know that you’re not alone, you’re not crazy, and doing the best you can is the best you can. <3