Letting Tomorrow Wait

As a CF mom, I'm always in a state of wonder about whether the choices I'm making are the right ones for my son with CF and the rest of the family.

| 3 min read
Erin-Moore-Headshot
Erin Moore
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It's 10 a.m. on a Sunday and we have received notification of new test results. My son had the CT scan on Friday and I'm surprised the results are available so quickly. While I'm overly eager to enter my username and password to see what the report says, I'm equally hesitant knowing that these results might change our lives. I worry about how the results will change his treatment plan; how it will impact our schedules; how we will handle one more thing. I wonder what it would feel like for things to just remain the same.

Erin-Moore-Drew

This is my struggle as a CF mom. I'm always in a state of wonder about whether the choices I'm making are the right ones for my son with CF, for my other kids, for my marriage and for our lives. We've tried to normalize something that's so far from normal -- and while that's perhaps not the right thing to do, it's what we've chosen for our family. We've identified priorities and built life plans and work plans and treatment plans around them. And now with test results hanging in the balance, I wonder how those priorities will have to shift, who will be disappointed and how we will go forward.

Erin-Moore-Kids

The results could show something small and easily treatable. But I'm the one who has to find the time to manage that small thing. I'm the one who has to make five phone calls over two days to coordinate its arrival, keeping me from volunteering in my daughter's classroom. I'm the one who has to change our sports schedule so that we can add just one more thing to our day. I'm the one who has to reorganize carpool when we have to return to the doctor for a follow-up, and then have to pick up dinner on our way home because we just don't have time to do it all. I'm the one who has to answer the tough questions asked by my boy about why he has to do just one more thing.

And that's if the results tell us it's something small and easily treatable.

I'm really not complaining about all I have to do, because I often consider it a privilege to see the world through this lens. I'm simply highlighting my capacity to do so.

My time, energy and emotional capacity are not infinite and the cognitive burden of this disease is great.

It's Sunday, and I'm stuck between knowing and not knowing. While I usually have a "glass half-full" attitude, I've decided to wait until tomorrow for the change that may be coming. Regardless of the results, almost nothing can change today, so I'll live in this life for one more day and take whatever tomorrow brings ... tomorrow.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Topics
Caring for a Child With CF | Parents & Guardians
Erin-Moore-Headshot

Erin is the mother of four young children, including Drew, who has CF. She works at Cincinnati Children's Hospital on the pulmonary team as a Family Partner. In her spare time, she can be found at the park with her kids or learning new things on social media. Read her blog, 66 Roses. Follow @ekeeleymoore on Twitter.

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