Being a CF Spouse During a Pandemic

Summer 2020 is simply not like the others. For me, a teacher and CF spouse, the unknown is taking away some of the normal summer bliss. But it's been hardest on my husband who feels he is holding us back as stores and restaurants gradually reopen.

| 7 min read
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Julie Riedy
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The other morning I was talking to my sister, Meghan, and being brutally honest with her about how my day was going. I'm a teacher, a mom of two boys (Liam, 10, and Tate, 6), and a spouse to Chad, who has cystic fibrosis. Like a lot of the world, we've been quarantined for a while now. Our isolation started on March 13, and we took it pretty seriously. With Chad having cystic fibrosis, COVID-19 was more likely to cause bigger issues for him than someone from the healthy population.

Meghan is one of the few people I “give it to straight,” and I didn't hold back that morning. School had just ended, the rest of the world seemed to be opening up, and our family, well … wasn't. For us, summer is the part of the year our family shines. The break from teaching renews my energy and gives me the opportunity to put it toward my family. Liam thrives at swim team, Tate and I complete dolphin ride after dolphin ride in the pool, and Chad grills more delicious food than our family can eat. This summer though is going to be much different.

To maintain the most responsible behavior, our version of social distancing is by the book. Actually, it's probably a different book titled something like, “I See Your 6 Feet and Raise You 10.”

Until the first weekend in June, we had not been out to shop, to see friends in their backyards, or to pick up food. Then, that weekend, on the heels of everything opening up, we decided it was safe to place a curbside order from Home Depot. As we drove there, the number of people walking around Main Street was surprising, and the lack of masks made my heart sink. I saw diners, groups of runners, and shoppers who seemed to be back to normal. 

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But for our family, we are in a different space, living in an indefinite quarantine. We're not even close to normal. The boys and I will go on bike rides, being careful to wear face coverings and stay off main roads. Today, for the first time ever, Liam, Tate, and I went down to the local field early in the morning in the hopes no one else was there, so the boys could kick the soccer ball around. It was the best 14 minutes I can remember with them. This was the most “out there” we had been since March 13. Still, Chad stayed home, unsure if it was safe for him to venture out. Hopefully, by the time you read this our family is more comfortable and heading out more; but for now, we're not.

Although I'm seeing so many levels of social distancing (or lack thereof), I can't help but feel like CF is making itself known now more than it ever has. We don't know when the risks will be low enough that we can get back to our normal. Major questions keep repeating: Can the boys start school in the fall?  Can I go back in the fall to teach? When can we go out to dinner? When will Chad feel comfortable to return to our very missed “normal” life? 

What I do know is that although his physical health is stable, currently Chad is feeling the mental strain of CF harder than he ever has.

He feels like he's holding us back. What I want him to know is that although EVERYTHING has changed in some ways -- also nothing has changed. Our family remains the most, most, most important thing. We are the family we are because of each of us -- Liam, Tate, Chad, and me -- and, yes, CF is a part of our family identity also. We would not be the family we are without each other, and I would not trade any decision Chad and I made building our lives for the world. 

The boys reflect on the highs of the day nightly, and they are loving the family time, games, and backyard fun. For the first time since the boys were born, quarantine has brought us family dinner every night. We have picked up some new hobbies, including building raised bed gardens and are about to embark on building a new deck.

I wish I could take any CF guilt from Chad and help him believe that I would not change a thing about him, his CF, or our family -- and I am certain the boys would not either.

Although I talked to Meghan while at a low point in my quarantine, I was candid and admitted that I was not sure I even wanted summer to come this year. She did what I am urging you all to do: She listened. She didn't try to tell me I was wrong or that this would be over soon. She didn't try to lessen the tug-of-war I am living of being a mom and a supportive wife. She listened and then she called me twice again that day and again the next to be sure I was OK. I was. I am. She initially hit me at a bad moment and then the next times she called I was in a totally different mindset, learning the ukulele and then playing backyard baseball.

Some days certain decisions for the future feel too large. Chad and I try to remember that most of the time those decisions are, well, for the future and not for today. Like the normal summer I am longing for, the mourning process I shared with Meghan is a natural experience because we are adjusting to the collective loss of our “normal.” This is the truth for all of us -- not just CF families -- and it has given our family an opportunity to experience the joy in simple moments.

Please stay vigilant. Wear a mask and check on the people who you know may be feeling this more than others. While the world reopens and people flock to their favorite places again, remember that some of us are not there yet.

Our family will get back to our (very loved) normal again -- just like all families will. We're all in the same water, just not in the same boat.

Interested in sharing your story? The CF Community Blog wants to hear from you.

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Topics
Coronavirus (COVID-19) | Social Life and Relationships
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Julie is a spouse to her husband, Chad, and an advocate for all things CF. She and her husband are inspired and motivated by volunteering with the Cystic Fibrosis Foundation in numerous ways. Formally a co-chair of a 20+ year dinner dance, Julie is now a mentor with Community Voice, a Tomorrow's Leader, the leader of a Great Strides team, is serving as the 2022 Volunteer Leadership Conference Co-chair, and has been featured on the Breaking Through podcast. Julie was born in Michigan and currently living in Alexandria, Va., where she is a mom to two boys and a full-time teacher. She enjoys running, going on adventures with her family, and scouting out local food gems. Follow Julie and her Great Strides team online on Instagram @inspire_spero and @julieriedy or on Twitter @julie_riedy.

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