Being a parent is hard work. Studies indicate that parents with children who also work full-time jobs are putting in 96 hours of work per week. That's hard enough when you're healthy, able-bodied and when normal activities take the normal amount of time.
But what if you aren't healthy, able-bodied or able to do things in a typical amount of time?
Ten months ago, I realized that the persistent joint pain, inflammation and other issues I'd been dealing with were not just an old injury, cold or a passing virus. I knew there was something systemic happening in my body, and it was a problem. I now have had six sets of x-rays totalling more than 25 exposures, five rounds of bloodwork, 15 appointments with different doctors and an MRI with another scheduled. I've had to leave the care of two doctors, neither of whom listened to me.
I still don't have answers as to what is wrong with me.
But this isn't about my illness. At the end of the day, illness or not, I'm still a mom with two kids to raise, as well as a spouse, a home and my own businesses. Learning to adapt my life during this health crisis has been an exercise in both humility and empowerment
They will be disappointed. They will also adapt
My kids are young, still in the figuring-out-potty-training and grade-school kind of young. There are things that disappoint them every day in their lives. Chicken and broccoli for dinner instead of pizza, early bedtime, not getting to hit their brother with a toy, you know, normal stuff.
But my kids have also spent the last 10 months being disappointed for far more important things, such as their mom not being able to get down to the floor to play with them, or having to cancel an outing because mommy was in too much pain.
Having a doula for a mom — who can and does leave at all hours for clients — means my children are more accustomed to this arrangement than others might be, but it also means that times they look forward to, where I'm not working, are impacted as well.
As a family, we've found other ways to connect. We watch more TV than I care to admit, and squabbles are often refereed from the couch. Sometimes we play games and read books from bed because I need to be lying down. Our quality time is quieter, more relaxed and filled with snuggles.
My kids don't know every single detail of my health. They don't need to. They're still small and deserve a world where they feel secure. The unknown is frightening for kids. But we also can't pretend there's nothing going on. We have learned to be selectively honest.
Because of my illness, my children are better people
They know mommy is sometimes unwell. They know sometimes I'm slow, need a cane and see the doctor lots. They know it doesn't mean I'm dying (that was a huge fear for one of them at one point). They know that some things are different than they were, but that I love them.
They will amaze you
While living with an undiagnosed illness (and trying to navigate our health system with a chronic condition) really and truly sucks, there have been some silver linings. And what my children have learned is the biggest silver lining of them all.
My two small children are learning compassion and empathy, and tolerance and acceptance for people who are different. Having a parent with an illness has made my oldest more aware and helpful with people who are struggling physically. It has made my youngest gentler with his hands, especially if he's told that someone needs him to be. And not gentle in that "bull in a china shop" kind of way that preschoolers are known for: truly gentle.
Because of my illness, my children are better people. That's a pretty sparkly silver lining for me.
I'm better at giving, than taking, advice. Aren't most of us? But through this, I've had to learn to actually take my own advice. This is where humility comes in. I had to learn to ask for help. It took a while, but I did learn that just pushing through, even if I knew I was at my end point, was a recipe for three days in bed, not a fabulous pan of brownies. I had to rely on my partner, family, friends and yes, even my kids, for help sometimes.
I also had to learn how to let my children ask others for help. As someone who loves being a mom, this was especially hard for me! Eventually the combination of other people helping them, and me talking them through doing it themselves, has made them both very independent for their age.
Taking back control
Right now, my body isn't mine. It isn't under my control. Neither are a lot of other aspects of my life, as my family navigates this health issue. But I don't like not being in control; most people don't. So I've had to learn how to take back control where I can.
For anyone who has a chronic condition or knows someone who does, the "spoons" analogy is helpful in explaining why things plans and intentions can change so quickly. We all wake up with a certain amount of "spoons" (energy) to get through the day, and different activities use a different amount of spoons.
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For someone who is chronically ill, every day activities become harder and take more spoons to accomplish. For me, this sometimes that means pushing myself past my daily allotment of spoons because it's a day or an activity that's important enough. Sometimes it means cancelling plans because I just can't manage it that day. It's about doing the things I can, and not focusing on those I can't.
Control has also meant delegating the tasks that can be done by others.
Chronic illness, disability, mental illness and even an acute health crisis can all have a devastating impact on a family. Parents with disabilities face greater scrutiny over their parenting abilities. It's exhausting and stressful. But the changes to my relationship with my children have only been positive. Yours can be too.
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