Photo courtesy of Brandy Ferner

Parenting With A Chronic Illness Is A Stop & Start Deal

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When I walk my daughter to school each morning, I have a strict strategy that includes eating nothing beforehand and saying a little prayer to the powers that be. I pass other moms out for a long walk or hauling both kids in a stroller and I wonder if they are teetering on the edge like me. When I return home without incident, it feels like a triumph and I try not to think about having to do it again tomorrow. And the next day. When I make it through a school performance or Jog-a-Thon, I feel like parent of the year. I consciously volunteer for few classroom positions and only those with little face time. I avoid the PTA. When I see other moms come and go with what seems like ease, I try to remember what that felt like. I used to know. I wasn’t always this sick. Or maybe I was, but back then the only person I had to keep alive was myself, and I had just enough energy for that. I’m parenting with a chronic illness, and it’s the most complicated thing in the world.

In a nutshell, I have struggled with digestive health since I was 16 years old, when I had two intestinal surgeries to save my life. The surgeon forgot to mention that he took some very vital parts out. You know, the ones that specifically absorb fats, vitamin B12 and other nutrients, along with that pesky valve that keeps large intestinal bacteria from migrating into the small intestine and ruining someone’s life. Minor details, really. Ones that I just found out about a year ago after a colonoscopy.

My chronic illness does not have a tidy diagnosis or an annual 5K, although The Trot for Trots does have a nice ring to it (imagine that, a whole race benefitting people about to crap their pants). Nor do my ailments stop at my digestive tract. I’ve got regular kidney stones, nutrient deficiencies, food intolerances, and migraines, and unsurprisingly, panic attacks and anxiety have recently joined the party. The very second one of these flare-ups subsides, another one starts, usually in addition to the always ill-timed post-40 menstrual cycle which is a chronic illness in itself, as far as I’m concerned. And sometimes shingles pops up for a seasonal giggle.

I’m a mess. Except for the days when I’m not. But right now, the bad days outnumber the good, and I’m on a never-ending quest to flip the scales.

Photo courtesy of Brandy Ferner

I never know when a kidney stone attack is going to come on, or my bowels are going to wage war on me, or I’m going to be relegated to fighting a migraine in a dark room. So in the meantime, I try and mom as best I can. On a typical weekday, my patience level starts out low because it takes me nearly two hours to feel even in the mornings and I can’t eat until after my last kid has been walked to and from school. But it’s during these two hours that I am normally handling breakfast requests, managing the subsequent lack of eating and then dealing with pants and shoe drama. This leaves me feeling flattened before the day has really even started. Where I imagine other parents can laugh at their kid’s fifth request for candy at 7:30 a.m., I have no reserves left to pull from because my margins are so narrow. I do my best and thankfully am not a yeller (that would require extra energy), but I eat an unhealthy amount of frustration for breakfast. Motherhood already requires strategy to stay sane, but my health issues require complex rules of their own. So I find myself micromanaging a web of strategies in the name of self-care, which I’m pretty sure is backfiring on me. But the other option isn’t any better. This is also why the nightly moving of a tiny sh*tty elf in December feels like the nail in my coffin at the end of the already too long day.

It’s only with tears that I can describe the pain I feel at not being able to be the mom I want to be.

I always prepare for holidays at least a month ahead of time because I never know if I’ll be incapacitated when they arrive, and I’d rather not have my health constantly ruin the magic for my kids. Talk about mom guilt. I shop for their Christmas gifts in October, and I don’t make any plans that are hinged on my being there. I work my life so that I can hit the eject button at any moment without everything falling apart around me – like the pre-cooked Thanksgiving meal I ordered last year. I must’ve known I was going to be in the E.R. with E. Coli.

Photo courtesy of Brandy Ferner

My husband has had to learn how to be me. He’s had to be the closer on Easter baskets, school projects, and last year, an entire Thanksgiving dinner. I feel guilty that he married someone who didn’t know they were going to operate at such a low capacity. He only shows me love, support and patience, but I can’t shake this feeling that he got a raw deal. For his sake, I sometimes wish we had been assigned different dorms in college and he had met and married another woman, someone who could meet his positive energy, robust immune system, and love of exploring the world without worrying about bathrooms. She probably wouldn’t be as fun to watch Vanderpump Rules with, though.

If this is what I feel like at 41, how the hell am I going to even manage at 61, or 81?

I feel anger that I didn’t know this would be my lot in life, not that I could’ve done anything to prepare for it. And it’s only with tears that I can describe the pain I feel at not being able to be the mom I want to be. Sure, even if I was healthy, I would still be sarcastic and dark, but sometimes I just want to go on a spontaneous road trip with my family like other moms do. My friends always tell me that my kids are learning strength and compassion by watching me cope with what is thrown my way, but I can say with 100 percent certainty that by now, my kids are covered in the compassion department, thanks to my health issues. My son offers to do anything to help me and my daughter brings hand-drawn pictures to me in bed. At this point, I just want them to have the most normal-ish life they can despite my having to frequently ghost. And that’s why I have so many plans in place to show up for them even when I can’t.

I know I worry about dying more than others do. If this is what I feel like at 41, how the hell am I going to even manage at 61, or 81? But on the upside, when I have a good day, I notice because it feels so different. I say to myself OHMYGOD THANK YOU FOR THIS DAY I WILL DO ANYTHING TO HAVE MORE OF THEM. But I never know what that anything is. Going to amusement parks has always been a nightmare for me, but I remember one day when we took the kids to Disneyland and for whatever reason, I was perfectly fine. I was eating popcorn without a care in the world – you know, just being a normal person – and I wanted to cry tears of joy right there in front of the Haunted Mansion.

Photo courtesy of Brandy Ferner

People love to try to fix me, and I appreciate their concern. Truly. But over the years, you can only hear someone suggest de-stressing and probiotics so many times before you want to karate chop their throat. As a PSA, if someone has a chronic illness, please don’t suggest they try the two most Googleable remedies for their issues. I promise you, they tried them about five years ago and they have a supplement graveyard to prove it. But if you have some sort of Slayer weed or black magic up your sleeve, by all means, do tell.

People also like to comment on my body, which is nothing new to any woman in our society. I assume these people must think I have an eating disorder and want to save me in a really unproductive way, by saying, “You are so skinny,” or “Looks like you could use a burger!” Starting last year, I finally decided to ditch the awkward laugh and instead respond with the truth, that I’m missing key parts of my digestive tract, thank you very much for noticing. And yes, I do get intense pleasure out of seeing them wish they’d kept their mouths shut.

I never know what the day, week or month is going to bring, if I will be water-birthing a kidney stone in my bathtub again, or dry heaving in a Ziploc bag on my way to ballet lessons. Normal things like having to sit through a movie at a theater or going out for dinner can instill panic. And it’s not just in my head, my bowels have ruined random fun for the past 25 years of my life, which is why my expectations for life are so low. I just want to be functional. I want to be able to eat without hurting. I don’t need to be entertained or even joyful most of the time, I just need to be able to show up for and with the people I love, you know, to live life. I also wouldn’t mind meeting Snoop Dogg someday, while I’m throwing out wishes.

Life’s happening around me, but without me, and it sucks.

I keep grasping at straws and naturopaths and GI doctors so that I can finally have more good days than bad, but I’m not even sure which foods are best for me because what’s on the gut-friendly diet, the anti-inflammatory diet and the kidney-stone diet are all conflicting. I’m pretty sure water is the only thing on all three. Reverse osmosis filtered, of course. Groan. I want to get to a place where I can look at my tea bag that says, “This life is a gift,” and I can wholeheartedly agree instead of rage against it. But I’m not there yet. All my bloggy, video, podcasting, writerly things are done when I’m feeling well. Except this one. I’m in bed for the third day in a row while I listen to my kids play with their friends below my bedroom window. Life’s happening around me, but without me, and it sucks.

I guess the forced silver lining here, if you don’t mind the pun, is that I am surrounded by people who love me regardless of my ability to do stuff for them. My family seems to stick around, and my closest friends know my quirks and are all a little broken too, so that works out. Because we’re all short a couple inches here or there, and the truth is it makes us more empathetic humans.