My children were only 7 and 8 when I got sick. In the period of just a few months I went from a self-proclaimed superwoman who worked full-time, attended graduate school, and took my kids on fun outings and activities to being bed-bound. I was unable to work or do school, and barely able to do the bare minimum for my children. I was devastated.
Not only was I unable to do the ‘fun’ mom things my children grew accustomed to — such as spontaneous outings to the movies, ice cream in our pajamas, or long hikes in the beautiful Olympic National Forest where we lived — but I was also unable to demonstrate to my kids the values that I had grown up with and that were so important to me.
As a child I had learned a strong work ethic and goal-driven focus from my parents — my dad had worked for the same place his entire life (and truly loved his career) and my mom created notebooks filled with written and collaged dreams, which she worked hard to achieve. When I was 16, my mom encouraged me to start my own book of goals. From my parents I learned the importance of hard work, dedication, and motivation. When I got sick, I worried I would no longer be able to pass these values on to my children.
I wasn’t working. I was not able to pursue many of my dreams and aspirations. I felt rather defeated. While I knew I was still a good mom and that my children were going to be just fine, I was frustrated that I couldn’t parent the way I’d originally planned to when I had kids.
A Different Set of Values
As I began my own personal journey of accepting my disability, parenting came up again and again for me. I wondered what I was teaching my children, and what (or if) they were learning from my physical and mental health struggles. What sort of values does a child learn when they see their parent in bed due to health issues, or going to multiple medical appointments, or trying out a new eating plan to see if it reduces symptoms? What do they learn when a parent’s primary job is caring for themselves rather than working full-time?
I began seeing the answers in small ways: one of my kids taking some time to themself in their room when they were having a rough day; another being understanding of a classmate who was going through a rough time. I realized that my disability, and the ways I was learning to take care of myself, were teaching my children equally important lessons.
When my youngest child was about 9 years old, they told me I should get the words “take care” tattooed on my arm so that I’d remember to not just take care of others all the time but to focus on taking care of myself. Just weeks later I did. Each day I see that tattoo it is not only a reminder to care for myself but also a reminder of the valuable lessons my children have learned.
My younger child, Zeal River, is now 15. “You’ve taught me to put my needs first and to take care of myself before doing other things I may want to do” they tell me. “I need to take my medicine, feed myself, and get out of the house for emotional self-care. You’re more efficient taking care of others when you have taken care of yourself.”
Veda River, age 16, told me she learned that it is okay to have rest days. “Seeing you need rest days a lot taught me not to feel bad about that sort of thing. You can’t control how you are going to feel. Not only is it okay, but it’s not something you should feel bad about at all.”
Veda also said this helped her to not only give herself more grace when she needs to take a day to rest but to be more understanding of others who may also need this.
Important Life Lessons
As I watch my teens transition into adulthood, I (like many other parents I’m sure) find myself reflecting on the things I’ve taught them, wondering if I’ve done all that I can to prepare them for life on their own. Has it been enough? Will they be ready to face the world? While there are no definite answers to those questions, I feel far more confident than I once did about the ways I’ve prepared them.
I know that my children will take care of their physical needs and not neglect those for other things, because they’ve witnessed how important it is to take care of the body. I know they will have healthy boundaries on who and what is demanding their time and energy, as they have seen the importance of taking time for themselves to better show up for others. I know they’ve learned about balance.
“Having a mom with a disability has helped me realize the unhealthy pressure to get things done and how to balance that with rest time,” Veda told me. “I give myself grace if I’m not feeling well but also push to get things done.”
And I know they will have compassion toward not only themself if they are struggling but also toward others who may be going through a hard time.
Many things shifted when I became disabled, from my work life to my hobbies to my parenting. I was worried those were losses, but what I’ve learned is that they are just changes. While I no longer can work full-time, I can write and teach part-time as my body is able. While I no longer can take multi-day backpacking trips, I can take hour-long walks on flat wooded paths.
And while my parenting doesn’t look the same as it did when I was not disabled, I am still a good parent teaching my children valuable lessons — lessons that they may have not learned if I wasn’t sick. Lessons of compassion, understanding, balance, and self-care.
Want to Get More Involved with Patient Advocacy?
The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.
