The next installment of the ChronicBabe blog carnival is all about motherhood and chronic illness, and given my recent post on trying to balance work, parenting, and chronic illness, this theme is certainly on my mind these days.
I’m working on a piece about Mother’s Day, infertility, and parenting, (and hey, did you know this week is National Infertility Awareness Week?) but I think it’s important to look specifically at the chronic illness aspect of things, too…and as the daughter of a chronically ill person, a patient myself, and the mother of a child with some health issues, I definitely have fodder.
The biggest thing that living with chronic illness has reinforced in my parenting is this: trusting my instincts. Our instincts. We bought all sorts of books and guides before she was born, but once she arrived, we quickly realized that getting to know her and paying attention to her cues was the best guide of all. We trusted her to let us know what she needed, and trusted our own intuition, too.
As a rare disease patient with a history of missed diagnoses, I have learned to be an advocate—to speak up when information is incorrect, to ask questions even when it is uncomfortable or awkward, to make sure my voice and my knowledge of my body and my symptoms are part of the dialogue.
As a parent, my job is to advocate for my daughter and to always work for what’s in her best interest. From firing her pediatrician when he continued to ignore her worsening symptoms to fine-tuning the balance between keeping her away from sick crowds during the winter season since she was very susceptible and also allowing her to socialize (she’s an outgoing girl!), I have more confidence saying “I know what is right for my kid”—and, more importantly, “I know when something is not right for my kid”—than I might have had I not lived through 30 years of illness.
I also think we are both more risk-tolerant than we might have been otherwise, especially me. She was such a tough little survivor all the way through this long journey of ours, and through her own health problems (which are under nice control these days), that it is easier for me to let go of fears and anxiety. I joke when I say it, but there is a lot of truth to the fact that if she could survive 37 weeks inside this body of mine, she can handle what the outside world throws at her.
It’s so easy to get bogged down in the labels and categories that come along with becoming parents (and I don’t mean Bugaboo versus Uppababy): Are you an attachment parent? A co-sleeper, a CIO-er, an E.A.S.Y. parent? Are you a breast feeding mama? Do you give your baby a pacifier, do you wear your baby, do you swaddle? Are you a working mom, a SAHM mom, or some variation of the two?
Parenting is never as black and white as these choices. They might contribute to the much larger picture of who we are as parents, but they are only as defining or absolute as we allow them to be. At least that’s how I feel, and how I feel about the possible implications of being a chronically ill mother. Or rather, a mother who happens to have chronic illness. Just as illness was never what I wanted to define my relationships or my career, it certainly isn’t what I want as a defining element of my daughter’s life.
And it isn’t.
But some days, making sure that isn’t the case takes more work than others.
There have been days where I have been really sick and run down and couldn’t imagine getting out of bed, but a certain squealing, chuckling little girl needed to eat whether I felt well or not. There have been days, especially earlier on, when trying to be the mother of a breastfed infant with health problems and the daughter of chronically ill parents who had their own needs left me flattened. There have been nights where, after another 18-hour day, staying up most of the night to watch her and hold her upright when she wasn’t feeling well was difficult if I wasn’t feeling well, either. But you do what you need to do in the moment and get through it, like any parent. Her needs come first.
Living with chronic illness already showed me how important it is to ask for help. Admittedly, this is much more difficult with my daughter because I want to be the one to do things for her and with her, but this is perhaps the greatest negotiation of parenting with chronic illness: I can’t be what she needs me to be if I am too sick.
It’s a line I am always balancing, and it took me many months to be able to start to make some of those choices—some days, that means she has to wait while I have my chest PT, some days her father does the morning shift, some days I abandon my word count to get some more rest so that the next day, I can give her all the energy I have.
I’ve come to see that those days where I have to shift things a bit still mean her needs come first—it’s just an alternative way of making sure she has two happy, (relatively) healthy parents who can give her what she deserves.