Living with Uncertainty: One Mother’s Story

living with uncertainty“The point of not dying might be to feel these things, to have this human experience, including the infuriating part about being on a ‘need to know’ basis with the Universe.”

Without question, it’s an uncertain time for many of us. For those of us with children, the unknowns extend far beyond ourselves, and there are so many questions. Will my children physically attend school next semester? Am I making the best choices for my children? What if my child gets sick? If only there was a magical way to bypass the discomfort or take a sneak peek into the future and plan accordingly. Or so I thought.

Over the past few weeks I’ve hardly been able to put down The Opposite of Certainty: Fear, Faith, and Life in Betweena beautiful (and–at times–humorous!) memoir written by Janine Urbaniak Reid. Janine recounts the details of caring for her son, who was diagnosed with a brain tumor at age 10, while trying to navigate a place of emotional uncertainty. While I can’t personally relate to the experience she shares in her story, I can absolutely relate to feelings of uncertainty in recent times.  Her vulnerability and courage inspired me, and I had the chance to ask her advice about handling challenging times too.

Related: The Perfection Problem: 5 Reasons Moms Feel So Stressed and What to Do About It

To prevent her children from being hurt, scared, or scarred, Janine shares that, once upon a time, she sought to be the “perfect” mother. She felt a protective instinct so strong, she was certain that if a mountain lion entered her yard, it would run in the other direction. That is, until her son was diagnosed with a brain tumorJanine immediately assumed guilt. Looking back, she’s realized that she was never empowered to remove all risk and pain from her children’s lives, and that her real strength was caring for her loved ones through the messiness of life. Janine says that “Parenting with a full and open heart is hero’s work, especially when you’re being asked to push beyond your own limits, as a human in an exhausted body. If I’m not distracted trying to control what was never mine to control, I’m apt to notice the good that can appear in the scariest of times.”

If you’re at all feeling uncertain about anything these days, I hope that you’ll find comfort in Janine’s story and words.

Q. Do you believe there are there any silver linings, or moments of hope, that come from the times when we are most challenged? 

A. Mason once told me, “I really believe that we wouldn’t be the family we are if I hadn’t had this cancer. We get to spend a lot of time together. That’s remarkably special.” He paused, “Don’t get me wrong, I’d much rather have not gotten cancer.” His sense of humor has been untouched by the brain tumor. I want to say his capacity to love has also been untouched, but I wonder if it’s possible that the tumor crisis made more room for love in all of us. Crisis tends to strip away what isn’t important. It brings into focus what is, and that’s each other.  We live in a world where the point seems to be achievement, which means securing the education that will get us the financial security that will ultimately make us safe and, therefore, happy. But will it really? Goals are important, life changing, and life preserving. The work we do enables us to make a positive impact and feed our families. But jobs change, career paths divert, and the maps we lovingly sketch for our kids’ lives morph unrecognizably. Ultimately, outside achievements can’t fill an inside void. Tough times reveal the weak places in what we think we know for sure, forcing us to let go of what we’re sure we can’t live without. This is a painful process, but what’s left is real.

Q. During really difficult times, faith can seem like a nearly impossible concept. What is no-matter-what-faith? Is it truly attainable? What kept you going in the really rough moments?
A. No-matter-what faith is a belief in the power of good that isn’t conditioned on things going the way I think they should. I call it God, but it goes by many names. When Mason was first diagnosed, my faith felt inadequate. I was sure that someone with a better God wouldn’t feel like I did. She’d be sure of a lot more, and probably have a better attitude. She’d be able to stop crying. Yet somehow I ended up believing more while knowing less about God. The title The Opposite of Certainty comes from a Paul Tilith quote, “Doubt is not the opposite of faith; it’s one element of faith.” And Anne Lamott’s take on that, “The opposite of faith isn’t doubt, it’s certainty.”

As humans on this precarious planet, we’re being asked to have profound faith, whether we’re religious or not. It’s a relief to learn that it’s okay to doubt, question, and get angry. When I was diagnosed with breast cancer, I had a lot of commentary for God. I mean really? Hadn’t I already punched the figurative frequent buyer card for tragedy in this life? Who would take care of my needy and complicated family if something happened to me? My prayer was, “enough already!” At some point, I gave up trying to figure out WHY, and concede that with my finite human mind, I might not understand the infinite ways of the universe. I realized that sometimes faith feels like being devastated, asking for help and not giving up. Faith became more a muscle than an idea.

 Related: Are Mothers Indulging in Enough Self Care? 

Q. How did you manage to take time for yourself without feeling selfish? Any advice for others who might struggle with this?

 

A. Taking time for myself has always been difficult. I’m wired to put everyone else’s needs first, and wait my turn without inconveniencing anyone. I tell myself that it’s okay when my turn is skipped – one more time – because I am stronger than most, and besides I’ll be happy when I’m sure that the people I love the most are taken care of. Crisis has a way of revealing our bad habits, especially those that are not sustainable. Eventually I realized that it was selfish not to take care of myself, and bring my family my most tired, resentful, depleted self. I started doing small things while Mason was hospitalized, taking a walk in the afternoon, resting when tired (revolutionary!), eating the healthy meals I’d foist on my kids, and getting much needed emotional support.

No one could do this for me, not my husband, certainly not my kids, because it was never their job. The breast cancer diagnosis brought home my mortality, which I greeted with indignation, like you don’t understand I have things to do, people to take care of. I was forced to prioritize my health and healing. I couldn’t push my body without consequence, no one can. We have to take care of ourselves, physically, emotionally and spiritually to do the hard work of mothering, this rewarding and relentless job.  The stakes are so high; we’ll do whatever it takes, sacrifice anything; we gird, try harder, and push aside our needs for another day. There is so much judgment coming from the inside and the outside. And I really believe it’s rooted in that desperate place where we just want everyone to be safe and we really want to know that we’re on the right track, that there is a right track.

This is such hard work, and no one is doing it perfectly. Notice the self-talk. Can you cultivate the loving voice you’d use with a child with yourself? Would you tell a five year-old to muscle through when she’s hungry and tired? Get yourself a glass of water, some apple slices, or make yourself a cup of tea. Ask for help. You are worthy. I can’t say this enough – you are doing hero’s work. And if you need more persuading to take gentle care during these times of profound stress and uncertainty, I’ll remind you that taking good care of you teaches your children to take good care of themselves.

Q. Telling your story is so brave. I’m so glad you shared this journey as it will be a guide for many. Has opening up (or “telling the truth“) helped your healing process? 
A. Telling the truth is always healing in my experience, though sometimes the hardest thing to do because it exposes our vulnerabilities, those so-called imperfections that we’re so sure are ours alone. There’s this isolation that we humans can stumble into, that voice that tells us no one feels like we do; we’re the only ones who are so afraid, so uncertain or unsure of ourselves. I’m often surprised when I speak my fears aloud, my mistakes, pettiness and people nod or kindly laugh in recognition. Writing the book was difficult and healing; it gave me a chance to feel what wasn’t safe to feel while living the experience. The fine-toothed-combing of the experience helped me notice the improbable good in the story – and in my life. I tricked myself into writing everything down (except what would embarrass my children) by thinking that no one would see the manuscript.
When I got stuck, Alan reminded me, “just tell the truth.” I could do that, just me and my computer. Then the book found a publisher, and eventually the galley copies arrived, so much for hiding out. But it comes back to my motivation for writing, the hope that my experience can help others.  I’ve survived prolonged, extreme uncertainty – while not losing my mind or my ability to laugh, my marriage or my faith in God and humanity. There’s an alchemy that transforms painful experiences when we can help others, gold wrought in knowing we’re not alone in our tender places and fears, that good can come out of the circumstances we’d never, ever volunteer for.

 

Image: Nadino/Shutterstock


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