I am so honoured to share this beautifully written guest post from Shannon MacFarlane today! Shannon opens up about the reality of chronic illness and parenting. Shannon gets very real about her life as a parent and a person living with multiple chronic illnesses! She shares truths, wisdom and advice in such a raw and absolutely beautiful way! I know this is a post that any parent living with any type of chronic pain or chronic illness is sure to relate to!
Without further ado, let’s turn it over to Shannon!
Chronic Illness and Parenting: How to Manage the Tough Days
I am a woman. I am a wife and mother. I am a daughter. I am a friend. I am a rescuer of animals. I am a student. I am a photographer. I am an educator.
I am chronically ill. I am exhausted. I hurt.
I live with three chronic illnesses: endometriosis, celiac disease, and a chronic Epstein-Barr (EBV) infection. On average, three days of every seven my body aches. My face hurts. My lymph nodes are swollen. My legs are weak. On a hard day it can be heroic to simply sit up, much less shower, cook, eat, work, or walk the dog.
I’m getting over the hump thanks to diligent self-care and am in my third year with EBV. At it’s height, EBV flattened me. I was unable to work because of it. I ended a career because of it. For a life-long overachieving, driven perfectionist, that was really hard to do. What’s harder is realizing that my son has never known the vibrant, energetic, strong version of his mom. He knows and loves the mom who is tired and sometimes falls asleep reading bedtime stories. This is the mom he covers with a blanket, hugs, and whispers to, “I’ve got you, Mommy.”
He is three years old. In some ways we live with similar challenges as he lives with epilepsy and even on a day without seizures he may have significant cognitive challenges or mood disruptions (in addition to what is normal behavior for this age). He needs more time than many kids to transition and adapt to new situations.
As much as motherhood is a tremendous challenge for me and seems unthinkably impossible on my worst days, it is those days that become the greatest gifts. On those days I must manage really limited resources (more spoons, please) to address what is essential. I learn about myself and my son. I learn about the kindness and love of my friends and family. I learn about what matters.
Before I dive in, I need to applaud my tremendously supportive husband. He’s carefully administered weekly injections for me, made sure I ate well when I was unable to get out of bed, and picked up my regular responsibilities to keep our household running smoothly. Unfortunately, he also works 24-hour shifts and I have regular stretches as a solo parent.
Parenting on Tough Days
Like any good spoonie, I know I need to be honest with myself about what I am able to do. My priority must be my health because without it I can’t care for my son. My oxygen mask goes on first. In this reality I’ve learned a few things about how to be the best parent I can be with limited resources.
My background in emergency and disaster management comes in handy here – that was the career I left after trying to work through illness for more than one year. Emergency management, much like life, cycles through four phases: prepare, respond, mitigate, and recover. Approaching the hard days of my illness like a series of emergencies or disasters I know will happen without knowing when they will happen has been a tremendous help.
This is what I do for myself and with my family:
1. Get real and honest about signs and symptoms, their severities, their frequencies, and their impacts.
2. Define limits, boundaries, and resources and honor those.
3. Identify what things must happen, what things are useful, and what things are nice to have. Make a “NO” list of things that won’t happen. These lists help to make decisions about whether to use all of today’s spoons or even borrow one from tomorrow.
4. Use essential functions (the things that must happen) as a starting place to determine the contingency plan – what happens when you aren’t functional.
As a chronically ill person and a parent, I am responsible to take care of both myself and my son no matter what. It’s hard to ask for help. It’s harder for single parents without family close by – I have just a taste of what that’s like during my days of solo parenting. When stuff happens I need to be honest with myself, get over my pride that tells me I’m weak for needing help, and ask for the help I need.
Pride held me back for many months. I didn’t want to lose my edge. I didn’t want to lose my place in the world. I realized I was fighting for achievement, something that didn’t really matter, in exchange for letting go of my health.
When my son began his journey with epilepsy, he modeled the behavior I had been fighting. He told me when he needed help. He told me when he was tired. He told me when he didn’t feel right about doing something. I listened and responded. He accepted my help, gratefully and casually. To him that’s just how it’s done. He leans on me when he needs to and when he can give back he does. Feeling that very fuzzy blanket land on me after falling short of another bedtime story is . . . well, it’s indescribably wonderful. He shows me the grace, compassion, and empathy that come with love.
I used to be the person who did everything and made it look effortless. It wasn’t, but I loved upholding that untouchable reputation. Asking for help is humbling and that’s something that I need. More importantly, however, is my son’s need for a mother who has the energy and strength enough to give him the biggest, squeeziest hugs. It’s more important for him to someday know his mother as the person on the other side of a sea of injections, supplements, acupuncture, and rest. She’s lost right now, and I catch just enough glimpses of her to know there is hope. When I catch up with her I expect she’ll be a little different – older, wiser, calmer, stronger, and more gracious. I think we’ll both love her to pieces.
Shannon is an advocate for wholehearted connection and intentional living which are central to her work as a photographer and family educator. She believes in holding hands, talking about feelings, learning the science behind behavior, and the power of the scientific approach – when we know better and feel better, we do better.
Families with challenging circumstances are of special interest to Shannon – her son is a NICU graduate and lives with epilepsy and she lives with three chronic illnesses. Shannon brings her experience and education in emergency and disaster management (like FEMA at the state level) to help families navigate the hazards and threats they encounter with the least amount of destructive impact. She is working on her PhD in psychology and is a certified parent educator.
Shannon lives with her husband, son, great Dane, and two cats in Tacoma, WA. She shares science and stories of parenthood and family dynamics, like the time she thought that a trip to the pumpkin patch for a four-month-old would be fun, at www.shannonmacfarlane.com. Her life and work as a photographer lives at www.shannonmacfarlanephotography.com. Be sure to stay up to date by following Shannon on Facebook!