Julie’s Perspective:
I’m a 35-year-old runner, gardener, yogi, teacher, wife, and mom. I love reading young adult novels, exploring farmer’s markets, adventuring with my family and experimenting with new recipes. I don’t have cystic fibrosis. In fact, for more than half my life, I didn’t even know CF existed. I had no idea the impact it would have on my life. But then again, for more than half my life, I didn’t know Chad.
Chad, my hubby, my best friend, my person. Chad is the reason I learned about CF. Chad and I met in college. He was the manager at the best college bar in the world and I happened to be working there. Chad was the guy who put flowers in the cooler at work for me, the guy who always stuck around to talk and the guy who walked me home after a late shift. Fast forward and Chad’s the guy who I fell in love with, the guy who proposed and the man I vowed to partner with for the rest of my life.
Like I mentioned, when we met in college, I didn’t know what CF was. I now understand it, as best as a person who doesn’t live it, can understand it. I have seen Chad in awesome health – able to hike in Montana and have the courage to whitewater raft.
I have also seen him in a really scary state – unable to walk across our kitchen without stopping and unsure if he could be the person he wanted to be because of anxiety and depression. Together, we’ve navigated doctor’s appointments, clinic visits, transplant discussions, and IVF. We’ve explained and tried to normalize aging with CF to friends, our parents, and most recently, to our boys.
Normalizing CF….that can be tricky. It’s hard for others to understand that our day can’t work the way most families days work. Chad needs time, both in the morning and night, for treatment. And, as most in the CF community knows, I’m not talking a few extra minutes. I’m talking 2-3 hours a day for treatment, plus time for meditation, exercise, extra rest, medication ordering, nose rinsing, nebulizer cleaning and more. CF also means that Chad sometimes can’t keep pace with others or do all the activities the rest of the group does. As the wife, I try to balance the pace of our kids or friends with Chad’s ability so that all feel like they are doing the right thing. And, more recently as Chad becomes older and his health is harder to rebound, it’s hard to normalize the depression and anxiety that such a demanding disease brings. But we do.
Somehow, we’ve made it so CF is at least for us, normal. The boys help clean nebulizer cups, plug in Chad’s vest, and race down to the basement in the morning to be with him while he does treatment. They know dad has CF, but also know that he’s ok. In their eyes, and in mine, he’s a superhero just the way he is (maybe, he’s a superhero because of who he is). They know Chad not as a CF patient but as a dad. The dad who walks them into school every morning, who reads extra books at night, the dad who loves DC sports and the dad who builds the most incredible Lego creations they can imagine.
There are moments when being the support person and normalizing CF can be challenging. When our older son asked Chad, out of the blue, why Chad has CF and he doesn’t, alerts sounded in my head. I wanted our son to know that questions are good and that it was great to learn and try to understand cystic fibrosis, as best a 6-year-old can. But I also didn’t want my answer about recessive and dominant genes to make Chad feel inferior. This time, I didn’t hit a grand slam. I used “weaker” as another word for recessive to try to make things easier for our son to understand. While supporting one, I hurt another. The balance of feelings, learning, and doing can sometimes tip. I apologized privately to Chad later, when our son could not hear. I have learned it is to be important to keep trying and admit when I fall short.
The other night, our three-year-old was talking with Chad after they had finished reading books before bed. Chad didn’t know I could hear, but our son was asking why Chad “plugs in and shakes.” He was asking why Chad does his vest treatment. Chad, without a beat, explained that he needs to shake up the mucus in his lungs so he can play better. Chad explained that he has CF, but our son doesn’t, so our son doesn’t do the vest. There were giggles next because our son said he likes that vest and likes to be with dad while he shakes.
There are times when being a CF wife and full-time working mom is really, really hard. There are days when the list feels endless and I become frustrated that Chad can’t help or join us playing because he’s doing treatment. Most days I don’t feel like that though. Most days, I am grateful that I get to partner and parent with a man who fights harder than any other person I know. He fights to get to be with me and our children. His devotion to us is shown with every treatment.
The challenges CF brings have brought patience, empathy, and compassion to our family. We purposefully and mindfully look with gratitude at the bright parts of life – riding bikes, backyard grilling, reading in bed and laughing. We can’t change that Chad has CF. We can, though, embrace each other, every day, and do our best to spread more love.
“I am grateful that I get to partner and parent with a man who fights harder than any other person I know. He fights to get to be with me and our children. His devotion to us is shown with every treatment. ” -Julie
