“When you’re faced with this type of responsibility, you’re constantly being pushed in on. Someone needing your utmost attention, time, and care, pushes in on you and time for their appointments pushes in on you. It’s not just having to deal with the doctors, nurses, and therapists, but the systems in which these professionals operate. So, you’re not only trying to navigate your career, because of course it’s even more important for you to have income, you are constantly butting up against these massive systems.” Said Chandra White-Cummings, Educator, Writer, and Social Justice Advocate.
We’re often forced to navigate life’s greatest challenges, without warning. As parents, there are many twists and turns, and not all children reach the developmental milestones we’ve been taught to expect. For millions of families with special needs children, parenting never recedes to an advisory role, but remains intense. So how do you take care of yourself when there isn’t room to breathe?
Chandra has navigated care for her oldest son, with complex medical needs, as a single Mom, for over 30 years. She’s learned to trust her instincts, build community, and rely on her faith. She opens up about how to manage the tension between self-care and life’s logistics, while caring for an adult son with a chronic illness.
The Caregiving Journey is Not Always Linear
Hearing the term ‘corporate ladder’ can feel laughable to Moms. Because there are so many pauses and retreats in our professional lives after kids. But many of us pull back from hands-on care as our kids grow. However, when parenting children with complex medical needs or disabilities, the path looks different.
Chandra explained, “My son’s journey is my journey. And my career is very intertwined because he did, and still does, have a serious diagnosis. It was partially responsible for his stroke at age 9, and sickle cell anemia in and of itself, is brutal. So, all of the things that have happened to him, and with him, have also happened to me in some respect.”
And Complex Care Adds Pressure to Your Career
Shortly after finishing law school, and starting a new job, Chandra was forced to make the puzzle pieces in her life fit with special needs care. “So, I was managing what my older son’s post stroke existence would be like at school, my insurance, and benefits at work, along with my job. At that point, career management isn’t about titles anymore; it becomes about what is my income trajectory going to look like?” The injustice of the Motherhood penalty includes losing earnings exactly when we need more financial stability. And an estimated 20 to 30% of children live in single-parent households.
And Your Wellbeing
It’s not a secret that we’re nowhere near closing the gendered wage and leadership gaps. The stats are disheartening for women, abysmal for women of color and for single Moms, there are added tradeoffs with every decision.
Chandra said, “With everything I have to consider, ‘how much is it going to cost me?’ And is it a long-, or short-term cost? These considerations are still part of my decision analysis. Thank God I went to Business School! Although I’m grateful for that education, over time the choices you have to make, become mentally devastating.”
So, Revisit Your Expectations
How often do you think about your reality versus what you planned? If you?re managing prolonged adversity, versus a short-term crisis, that reconciliation can be exhausting.
Chandra explained, “There’s an emotional toll on your psyche. Because you’re dealing with incredible levels of disappointment and unmet expectations. And it?s not only in your career, let’s be honest, Moms have expectations around what their kids? lives are going to be like. And what our lives are going to be like together. So, when you find yourself in a special needs caregiving role all of that is crashed to Hades!”
And Practice “Radical Acceptance”
Chandra wrote a piece for the Washington Post about navigating uncertainty early in the pandemic. In her research, she discovered the concept of “radical acceptance.” Although it’s based on Buddhist principles, radical acceptance evolved from its religious roots into an important part of therapeutic practices, like DBT.
Chandra sees value in understanding the practicality of the concept. She explained, “It means you see each situation for what it is even when you know it’s not going to turn out the way you need it to or want it to be. And you just accept it. Because we’re kind of taught to ‘keep pushing,’ but there are times when that approach is not beneficial.”
Ask For Help Until They Say No
Chandra said, “Sometimes Moms have to bite the bullet and confront the people closest to them with what they need. If you’ve got family, until they tell you no, lean into them. My younger son is 27 now and finally I said to him, ‘does it ever occur to you that I need help with your brother?’ And you know, he gave me this look. Like, ‘oh I thought that was your job.’ So, we have to start teaching our children, especially our sons, to shoulder family responsibilities. I had to put my foot down and say, ‘if you want to live in this intergenerational household, you’re going to have to help me.’ Because I’m not going to keep doing it all. As women, sometimes we have to look out for ourselves in the domestic space.”
And Lean into Your Faith
Early in our lives, most of us are trained not to discuss our religious or political beliefs publicly. But faith and spirituality are central in many of our lives. And even if you?re not a person of faith, tapping into hope and support through challenging circumstances, is important.
Chandra said, “I came to understand that if I was going to survive, I had to get more serious about my relationship with God. Because there were times when I looked around and it was me, my sick son, and my little one who desperately needed my attention and guidance. And I thought, ‘what am I going to do?’ So, I prayed. And that was the vehicle that brought things into my life that I could not get otherwise. It brought people, ideas, and resources.”
Build a Supportive Community
Chandra credits faith as her anchor through the intensity of always-on caregiving. And having an incredible faith community that she trusts. She said, ?Sometimes, I get really stuck and I can’t think of ways to even help myself because I’m so busy thinking about other people. Then I?ll talk to some of my friends and they’re like, ?we don’t know the answer either, but let’s pray!? So, we pray. If you?ve been exposed to any Black women of faith, you know they can go all in, on prayer" Amen to that!
Find People Who Believe in Your Boundaries
When I asked Chandra, ‘what does self-care mean to you and how do you honor it in your life?’ She laughed and said one word, “Boundaries!” Our boundaries aren?t always respected, and the way we set them really varies based on the context. But holding to your vision of what you will tolerate, especially in psychologically safe spaces, is part of the answer.
She said, “We have to use courage to make boundaries for ourselves and get support in that process. Even if it’s only one other woman who understands. She can help you by saying, ‘Yes, do that for yourself’ to make that boundary!”
And Savor Small Moments of Joy
Big events that make us happy in the moment are wonderful! But sustained joy comes from finding peace, rest, and delight, in daily life. Even when you?re in your most intense seasons of caregiving, there?s something you can do to nourish yourself.
Chandra said, “One important thing I discovered, is doing little things I fundamentally enjoy. They breathe something back into me. I love nature so, just looking out the window does something for me. Because I’m reflecting and taking in the beauty of it. There are other things I enjoy too, like reading and movies, and taking naps on the weekends.”
Many thanks to the talented Chandra White-Cummings!
Follow Chandra’s great adventure on Twitter.
Moms, become more protective of your time. Learn about our member subscriptions.
Ready to put yourself back onto your to-do list? Take a TimeCheck.
Shared your story yet? Take our quick survey to change how workplaces support parents.
Employers, ready to rewrite hidden workplace rules? Become Allies@Work?
About Chanda White-Cummings:
Chandra believes in the portfolio approach to work, and pursues projects and vocations that reflect her skills, experiences, and deeply-motivating passions. She is currently a Math Leadership Fellow and I’d an Educator who specializes in students in under-resourced settings; her writing has been published in Washington Post, Christianity Today, and other outlets, and she was formerly Managing Editor of an online publication focused on Black mental health. She has done advocacy planning work with sickle cell organizations and is a member of a working group of the Rare Disease Diversity Coalition. Not least, she is a mom to two young adult sons both with chronic illnesses.
