What would you do if you had a dying child but there was a chance to save him?

Guest Blog by Allison Muedder

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. Overtime, 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 collaborating with researchers through Project Alive. The goal was simple: to keep kids with Hunter Syndrome alive. After learning how close the researchers were — a new gene therapy drug is ready and approved for the first human clinical trial — and funding was the only obstacle, we took action. Our family dove headfirst into raising that money. We have been furiously trying to raise the 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, which will be ready in July. 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.

For as grateful as I am for this hope, it’s also exhausting and all-consuming. I wake up at 3 a.m. reaching 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 his 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 by 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 and fighting to save his life. Regardless of the story, I think most of us are living a different version of what we probably first imagined motherhood to look like.

We can become paralyzed by the 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.
    • For example, I have arranged help for my youngest two children to keep a consistent “Friday mommy date” with my oldest daughter. After several months of the routine, it’s apparent she looks forward to this time 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 time periods where I may be “distracted mommy” knowing 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 an hour or two, I can sense my kids “buckets” are being filled and it can carry 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 this notion of creating new activities for our kids. Some of my sweetest moments lately have been spent coloring or baking banana bread.
  • Snuggle!
    • The power of bedtime snuggles — never underestimate them.

It’s not easy grieving and accepting parts of our story that are different than we expected. It’s not easy not knowing the ending to 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.

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