Poems & Essays

09 Jan

Mothering Differently: Parenting with Chronic Fatigue Syndrome

General/Column 10 Responses

I’m running through a field with my children. I grab my five-year-old son Ethan around the waist, and we tumble into the grass, laughing. My three-year-old daughter Paige finally catches up and jumps on top of us yelling, “Family hug!” Then, I wake up—dizziness, a storm, gathering strength behind my eyelids. I can tell it’s going to be a bad day. I consider reaching for my phone, turning on my meditation that urges “my cells to heal my body” but I don’t quite have the will for it.

My children pitter-patter into my room. “How you feeling kid?” Paige asks, climbing into my bed. She loves to pretend that she’s the mom and I’m her baby. We never played this game before I got sick and a little voice in my head whispers that this role reversal isn’t normal creative play, that it symbolizes my failure as a parent. Paige brushes my hair out of my eyes before ordering me to, “Give your mother a kiss,” and Ethan picks up my pill case on the nightstand, pops out today’s dose, spilling them into my palm. “Here’s your get-better-medicine, Mamma.”

I cuddle them close, trying to make this moment count. They start telling me about everywhere Daddy’s going to take them today: Trader Joe’s, the zoo and maybe for pizza. They sound better than my plans which are: T.V., sleep, and contemplating a shower.

Later, when the slamming of the front door announces their departure, it feels like a layer of my skin has been stripped off. Alone time used to be a luxury, but since chronic fatigue has taken hold of my cells and pushed me out of my life, it is now fallout, an ugly necessity.

My children have been gone for a few hours when my husband texts me the first picture – the kids on the bug carousel, their smiles huge half-circles. Then every twenty minutes or so I get another one until I turn off my phone. I know he’s trying to make me a part of their day, but today I can’t get past the fact that I’m not in a single picture, and I don’t know when I will be again.

I first started feeling tired a year earlier. “Well, you’re a mom with two small kids,” other people would say. “We’re all tired.”

But I knew that wasn’t it. My exhaustion permeated my bones, and my head constantly felt like I’d just stepped off a carnival ride. I hopped from doctor to doctor and diagnosis to diagnosis—thyroid, vertigo, auto-immune issues. I took medication, went to vestibular therapy, did elimination diets, added supplements, and had acupuncture, but I just got worse. The term chronic fatigue syndrome, or ME/CFS, started popping up. I didn’t want to claim it because it seemed to be one of those things that no one understood and no one could fix, a diagnosis of exclusion, like colic for adults, but with less hope of growing out of it. But, month by month as I was able to do less and less, I wasn’t sure what else to call it.

Through Facebook, I connected with a friend of a friend who had been dealing with this for years. I read the articles she posted about advocacy for research, watched video clips of “The Million Missing,” showing the struggles of some of the estimated 2.5 million people pushed out of their active lives by this disease. We texted occasionally, but I was afraid to call her because it meant acknowledging this diagnosis was mine. Finally, during one school vacation when I had to go to my mom’s for help with the kids because I was too weak and dizzy to get out of bed, I texted her, “Can we talk?”

We spent the first portion of the call talking symptoms, supplements, the known and the unknown about the disease, but it wasn’t enough. I wanted her to tell me how to live with waking up each morning having your first breath end in a yawn and your muscles feeling like they’re caked in cement, to have the thought of walking three blocks to pick-up your child from school make you want to curl into the fetal position, while the walk itself makes you collapse on the couch with barely enough energy to pick up the remote and turn on Peppa Pig. Most of all, I wanted her to tell me how to deal with the fact that I’m slipping out of my children’s lives.

“I hate that I can’t mother,” I lamented to her. “Their lives are going by without me.”

“You can mother,” she said, “you’re just mothering differently. You’re doing everything important.”

I didn’t believe her, but I repeat her words daily anyway, swallowing them along with my stack of pills. I repeat them when Ethan begs me to go for a walk around the block until Daddy comes home. I repeat them when Paige cries because I’m supposed to be parent of the day at her playgroup but have to ask a friend to step in for me. I breath her words in and out like a mantra as I pull my children onto my lap, asking them to tell me about their day, trying to weave my presence into their existence even if after the fact.

I can’t say that I’ve found peace, because I haven’t. I hate this disease that has lay waste to my body and to the mother I thought I was. But I will not let it destroy the fierce kernel of love in my soul, will not let the loss of part of my identity, eviscerate the rest. So, I work my hardest to focus on what’s still there, like making up oogly-googly stories with Ethan and bunny foo-foo and fa-fa stories with Paige, kissing Paige until she laughs so hard she starts to cry, helping Ethan sound out the “letters of the week” while we cuddle on the couch.

I haven’t given up faith that I’ll get better. But if I don’t, I hope that this is what they will remember – how my love was so powerful it exploded out of my pores like sweat, how I listened to every word about their day, how we created magic worlds with words, how I called out karate commands and dance moves and told knock-knock jokes that made no sense, even if 90% of it was from my place on the couch, my head resting against a stack of pillows.

Because I am mothering. I am. I’m just mothering differently.

 

Heather Osterman-Davis’ writing may be found in Time; Creative Nonfiction; BrainChild; Literary Mama; Tribe; and Sassee Magazine among others. You can find her on Twitter @heatherosterman

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10 Comments

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  1. Mitch

    January 9, 2017 at 5:56 pm

    Amazing.

    Reply
  2. Dawn

    January 11, 2017 at 9:59 pm

    Thank you for making yourself vulnerable and sharing your candid, intimate thoughts on motherhood. We all parent in our own and different ways and I’m inspired to see you embracing a style that works for you and supports your children. Your story is inspiring!

    Reply
    • Heather

      January 17, 2017 at 6:50 pm

      Thanks Dawn! In certainly trying. Some days better at embracing than others 🙂

      Reply
  3. Tina Rodwell

    June 8, 2017 at 3:51 pm

    You have found beautiful in this sadness. It is a gift that you have passed on to all of us. Thank You

    I’m at the other end of ME, my child has had it from the age of 8, and he is now 12. Having two older children I am in such a rush to make all my son’s dreams come true, to give him a life the other two had, it can make him feel sad. To see him on a merry-go-round, picnics on the beach or ride a bike to school with friends, I miss him so so much. I try to hold back, but that is just as painful for him and me. Answers are hard to find in life at the best of times.

    You are right sometimes being involved with normal life can be hard and yet we find ways, this does not make up for the loss. Having to come to terms with a different life is hard, but because the truth is hidden from us, and as yet no real research funding put forward, we are always waiting for things to change, and that can be an extra burden.

    Sometime though the simple things can give us some pleasure, and sitting on a sofa spending time talking and sharing are just so intimate and full of gentleness it would be hard to let them go, and others forget to make time for those cherished moments. They miss out on so much. Would I change things? Now I know those special times, I want them in my life too, but it would be nice to choose the time and place and not have it forced on us.

    Reply
  4. Lyra

    June 8, 2017 at 7:43 pm

    Thank you for posting this ! I was diagnosed at 23 and haven’t yet have children, too afraid that I couldn’t ever be well enough to do it. Now at 27 it’s all I want but I haven’t yet found much information about actual motherhood with this disease. Your article has put to rest some very deep fears and I am so glad u have the will to continue to be there for your children with so much love. A lot of children don’t get that, even with healthy parents. I just hope one day there will be a breakthrough and actual treatment, until then stay strong and I hope you have many good days.

    Reply
  5. Cassea

    June 8, 2017 at 9:58 pm

    Thank you for this article. If it gives you any peace, I mothered this way too. My baby is 18 and my eldest is 28. All four know I love them and are lovely caring people.

    Reply
  6. Holly

    June 9, 2017 at 3:30 pm

    Thank you for sharing your experience. When I first became a mother with ME, I felt isolated. Thankfully finding support online from other mothers on this same path has helped.

    Reply
  7. Patricia Fero

    June 10, 2017 at 3:06 am

    My daughter was just 5 when I became ill, but I persisted working for another 8 years. She never knew I was as bad off as I felt. I just trudged on until I could not anymore. She is 42 now and tells me that she had no idea what my illness was like and to her I was always just mom. She is doing well and has 3 children of her own. NOW she knows when I am at slow, slower or stop. My grandchildren know that I am weak, but I devote every ounce of energy to them and it is so worth….being a granny. I can still cook and they love to be in our small condo. Kids don’t need much. For Heather and all those mamas who love unconditionally, thumbs up .

    Reply
  8. seauf

    June 10, 2017 at 8:25 am

    u sound like an awesome mom ;o)

    Reply
  9. Shari Wilson

    June 11, 2017 at 8:53 pm

    I stumbled upon this post. I felt exactly as you do. I could have written this. I have come a long way to recovery in just 1 year! So I want to share with you what helped me. True Cellular Detox. You can watch this short video about it. I hope you find your way back to health! Hugs, you can get through this! Please email me if you have any questions or just need someone to help and empathize with you.
    https://m.youtube.com/watch?v=yNGj7tM4lN4

    Reply

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