To see him running on the playground and to hear his belly laugh as he makes his way down the slide, you would never know it. You would never know he’s dying—not yet. It’s happening slowly, and we’re racing against the clock. My little guy has Hunter Syndrome, meaning his body is missing an enzyme responsible for recycling cellular waste. Over time, the build-up will lead to progressive physical and neurological damage. The disease is ruthless, taking children’s ability to walk, talk, and eat, and then taking their lives before their teen years.
Not long after my son Finn’s diagnosis, we connected with families who are collaborating with researchers through Project Alive. The goal was simple: to keep kids with Hunter Syndrome alive. We learned that a new gene therapy drug was ready and approved for the first human clinical trial, but funding remained an obstacle—so we took action. Our family dove headfirst into raising money for the gene therapy clinical trial that could save our son’s life. Most days it feels hopeful and purposeful. Enough money was raised last year to begin making the clinical trial drug. If the remaining funds are raised, we can start the trial and give Finn a shot at life. It’s so tangible and yet so maddening that money is standing in the way of turning research into treatment.
As grateful as I am for this hope, it’s also exhausting and all-consuming. I wake up at 3 a.m. and reach for my phone to jot down an idea for a social media post, a person to contact, or the next sentence in a grant cover letter. My mind never seems to stop thinking about how we can raise the money needed. And underneath it all, I wrestle with this nagging question: “Are my children suffering now because I’m trying so hard to preserve the future?”
I wonder if the pace at which we’re running to raise money for a cure is detrimental to our son’s own development right now and to my girls’ well-being. This exhausted, often short-tempered mama feels like I’m handing my children anything but my “first fruits” when it comes to time and intentional motherhood. Meal planning has become obsolete and laundry piles are the new decorating trend in our home. Some days it feels like the perfect storm of anger, disappointment, and discouragement as I think about the quality of my motherhood journey.
I feel guilty for time I spend on the computer or phone (or both simultaneously!). I feel guilty responding to emails, managing social media, or coordinating fundraising events instead of playing, reading books, or riding bikes. I feel guilty about the amount of time I leave my girls to take my son to appointments, therapies, and hospital stays.
I never expected motherhood to look this way. I’m not only living a story I never imagined, but I’m shocked with the overwhelming mommy guilt associated with caring for a child with special needs while fighting to save his life. Regardless of the story, I think most of us are living a different version of motherhood than we imagined.
We can become paralyzed by disappointment and easily fall into the guilt trap by believing the lie that we should be able to do it all. Or, we can shift and ask ourselves, “What does winning look like in this season and how do I adapt?” Once I accepted this season was not going to be filled with Pinterest-inspired activities and new recipes, I adopted a few habits and boundaries to preserve snippets of the intentional mothering I craved.
Set specific one-on-one time with each child.
I have arranged help to care for my youngest two children to keep a weekly “Mommy Date” with my oldest daughter. After several months of the routine, it’s apparent she looks forward to our time together the same day and time each week. In our hectic life, this has become a constant touchpoint for us.
Mark specific times during the week to unplug from phone and computer.
I mark it on my planner as “Mommy Time.” This helps me release the guilt of those other times where I may be “distracted mommy,” because I know that I’ve got the time set aside to turn my phone on silent and place my laptop in the other room. Even if it’s just an hour or two, I can sense my kids buckets are being filled and it carries us through those days when I must be more split-focused and distracted.
Do simple activities they enjoy.
It’s easy to get carried away with the notion of creating new activities for our kids, but this shouldn’t stand in the way of our doing something—anything—to connect with them and show love. Some of my sweetest moments lately have been spent coloring or baking banana bread.
Never underestimate the power of bedtime snuggles. Not only does is help create feelings of calm for the kids before they drift off to sleep, but it also gives you a boost of oxytocin, which can increase your overall mood.
It’s not easy grieving and accepting parts of our story that are different than we expected. It’s not easy not knowing the end of our difficult journeys. But I’m convinced we can thrive if we realign expectations and release the guilt. I’ve come to accept my children are more adaptable than I imagined and more gracious than I deserve.
QUESTION: In difficult seasons, what simple habits can you adopt and boundaries can you set to release mommy guilt and embrace realistic expectations?
CHALLENGE: Set some device-free time to connect with your kids and let go of the mommy guilt when the other areas of life are falling short of your hopeful expectations and best intentions.
Edited by Nollie Haws and Kimberly Price.
Image provided by the author.
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