A Family Who Embraces Each Other

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

CFers Are An Incredible Bunch

Marissa’s Perspective:

CFers are an incredible bunch, and Eric is no exception. Having a close view of his courage, strength, and determination has changed me for the better…and the not-so-easy times we’ve encountered have helped me grow as a person. I’ve become more thankful for the many positive things in my life, more content to enjoy simple pleasures like a night at home with my favorite person in the world. I’ve evolved into a creative problem-solver, having become a master organizer of medical supplies and sneaked cream cheese into Kraft Easy Mac to add much-needed calories. I stay cool in a crisis and am always prepared (just ask the EMTs and ER staff), thanks to some epic hemorrhages, a cancer diagnosis, and other emergencies. 

Mostly, I’m stronger. As a spoonie myself, I never would have believed I could make through what we dealt with this past fall. I was getting 2-3 hours of sleep a night as I held on to my full-time job and made it to the hospital 5+ days a week to talk to the doctors and attend transplant caregiver classes. On top of that, I was fundraising for transplant expenses and doing my own medical research in my “free” time, all while the love of my life, my whole world, fought for his life and we anxiously waited to hear if he would be accepted as a transplant candidate. 

And most importantly, I’ve become a believer. A believer in miracles, God, hope, love, and a small, small world. My new take on belief started the day after Eric was finally listed for a lung transplant after an emergency inpatient evaluation. It followed an episode of massive hemoptysis, two hospital transfers, a BAE, many days in the ICU, and a call from an ICU doctor saying that they would be forced to intubate Eric due to the massive strain his heart was under trying to compensate for his broken lungs—the call that left me sobbing hysterically at my desk before racing to the hospital while making impossibly difficult calls to our families. 

I headed to the hospital that morning feeling relieved that Eric had finally been placed on the transplant waiting list. The relief didn’t last long: the hemoptysis, which had been held at bay for over a week, returned and grew more severe throughout the day. Not long after I arrived, Eric got a call from an out-of-state number on his cell phone, which he ignored. A few seconds later, I got a call from a number I didn’t recognize. It was a transplant coordinator, calling to inform us that a pair of donor lungs had been located and were a match for Eric, he was at the top of the list. We were in complete disbelief. Getting “THE CALL” less than 24 hours after joining the wait list? Certain this would turn out to be a “dry run”, we kept the news to ourselves and tried to enjoy the day together, keeping the news to ourselves but growing more and more worried as the hemoptysis got worse and the doctors told us nothing more could be done to stop the bleeding. I helped Eric wash his hair and we talked about the transplant education classes he’d missed as an inpatient. 

As the day progressed, we continued to wait for updates on the status, expecting each call to end in disappointment. Eric, exhausted from coughing, fighting for oxygen, and the flurry of surgical preparations, thankfully fell asleep. That left me alone in the dark hospital room, worrying about the rising level of blood in his culture cup and awaiting more news from the transplant coordinator. We finally got the call around midnight—the lungs were a go! Less than 36 hours after being listed, Eric was in surgery, and not a moment too soon. When I spoke with his surgeon the next day (after 12 hours in surgery), he told me that Eric’s lungs were in horrible shape, with a number of blood vessels ready to burst. 

Add to that all of the amazing things that I witnessed as Eric recovered post-transplant—breathing room air and walking as soon as he was weaned off sedation and walking nearly a mile just a couple of days after surgery. Then, a few weeks later, we were contacted by the donor’s family following a news story…and now the donor’s mother calls Eric her “bonus son.” 

More and more, I think CFers get a few more miracles than the average person; maybe it’s so they can share their unique stories, inspire the people who know and love them and leave their incredible marks on the world. 

“More and more, I think CFers get a few more miracles than the average person; maybe it’s so they can share their unique stories, inspire the people who know and love them and leave their incredible marks on the world.”  – Marissa

The Gifts Of A Fight With CF

Chad’s Perspective: 

Starting this blog post was a hard thing for me as putting this down on paper is not easy for me. When Dan asked if I would be willing to share something about CF to help promote Cystic Fibrosis awareness month I was all in but actually writing it was a whole different story. Where do I start? What do I want to share? Should I talk about the gift of CF, the challenges of CF, what life is like with CF, life with kids and CF? All questions that kept swirling in my mind so I thought I would just start and let it lead where it may.

I was diagnosed at the age of three and at that time my parents were told that I would most likely not live long enough to see my 12th birthday. Well 32 (almost 33 years) have passed since then and we are still here kicking at 35 as a college graduate, working full time, married to the most incredible woman I know and a father to two of the kindest and funniest little humans (I may be slightly biased but they are the best!).

From hospital stays, to missing school, to surgeries to today’s battles with depression and anxiety, the journey has not been without its struggles and its challenges. But with the struggles comes a true appreciation for the little moments and the little victories that happen every day is what amazes me. Growing up, I played sports constantly, never really thought about the future as honestly, I didn’t know what it was going to be. I didn’t think about the consequences. I mean, I managed a bar in a college town when people could still smoke indoors.  But, if I had not done that I would not have met Julie. Yes, did that have a negative impact on my health, in the long run, sure it did, but what would my life be now?  Most likely without Julie and my kiddos, the support system that focuses my fight and encourages me to keep fighting for every breath.

Yes, it is a fight.  There are days when it hurts to walk up a flight of steps or you have to stop when walking from your car to the parking lot. There are moments when you are by yourself with your kids and you have a panic attack scraping ice off your car.  The panic is real because it is hard to breathe and so you have to ask them to get out of the car and come in the house so daddy can calm himself down.  And it’s hard to explain it to a 6 and a 3-year-old in a way that makes dad “normal” and keeps them feeling safe. The fight and the struggle are constant.  

It is not easy to remember which pills you take this month and which ones you take next month. It’s not easy to remember to order the meds far enough in advance that they can be processed and shipped so you don’t miss a day. It is not easy to say no to friends, your wife or your kids because you have to do treatments or you are just in so much pain that you need to sit or you simply don’t have the energy.

It is a struggle to come to grips as you watch your lung function fall for six months with no answer as to why or no sign of it stopping. It is a struggle to come to grips with the fact that a life-saving transplant could be the only thing that saves you and allows you to continue living a life that you had cherished for so long. It is painful to watch loved ones struggle to understand the what we are going through and to face the wrath of our anger or the sadness of depression of it when it all becomes too much to handle and our hard candy shell comes cracking apart.

But for all the struggles, the pain, and the constant fight to take a simple breath there is a hope, a love of life and immense strength that comes with CF. There is an ability to find the smallest of good and joy in a situation that to others would be so dark. There is an appreciation for that simple breath, the ability to let air fill the lungs that are so often taken for granted. It’s crazy to think that breathing can be taken for granted but stop and ask yourself when was the last time you really noticed your belly and chest rising as your lungs filled with air and stopped to wonder how incredible the act of breathing really is.

Having CF (and with the help of meditation) has allowed me to stop and take stock in the fact that I woke up and filled my lungs full with air (full being the relative term), to love the moments when the windows are down and the sunroof is open and the music’s too loud and I look crazy signing at the top of my lungs (usually to Mumford and Sons, Widespread Panic, maybe some Michael Jackson or anything else with a beat and deep bass). To cherish the moments in the early morning hours when I hear the stampede of little feet running down the stairs and across the living room through the kitchen and down the next set of stairs to the basement to say “good morning” and hang with dad (who is doing treatments) before breakfast and school.

Some would say that “they have CF but CF does not have them,” I would say that yes I have CF and CF does have me, it helps defines who I am, it decides how I live my life and the decisions I make each and every day. But that is a good thing.  It has not stopped me from doing the things I have wanted to do or love the people that I love. I believe that in all of us with CF it creates a drive to outlast this disease as best we can and embrace the moments that make up each breath!

As I have sufficiently rambled my way through this (and I thank you for making it this far), I write all this on the page not looking for sympathy or empathy but to spread awareness into the struggles of cystic fibrosis (and all those it touches).  I hope I was able to highlight the incredible resilience, compassion, and strength of the CF Community. I will leave you a simple question, “What will you do today to make someone else smile?”

“But for all the struggles, the pain, and the constant fight to take a simple breath there is a hope, a love of life and immense strength that comes with CF. There is an ability to find the smallest of good and joy in a situation that to others would be so dark.”  – Chad

Life’s Fragility

 Eric’s Perspective:

Most chronic, invisible diseases are like an iceberg. Even once you think you’ve got a complete picture of the shape of the monster, you haven’t seen the largest, scariest part. CF isn’t something that just flares up sometimes and lets you live your life the rest of the time; it’s also not something that can be solved by living a healthy lifestyle. Some CFers may prolong the inevitable through exercise, organic veggies, and meditation—but regardless, the disease will have its day. There’s no beating CF, no remission, no prevention, no cure. It seeps into every second of every day of your life and dictates every decision you make, from work to relationships and everything in between.

If you’re lucky enough to find yourself in a supportive relationship as a CF patient, you’ll see that your disease drives most of the major decisions you make as a couple. You and your partner will make decisions about jobs, money, home, children, pets, vacation, and just about everything else by accounting for CF. 

Love is a precious and unexpected gift in the midst of the CF trials. Knowing you aren’t alone makes all the difference in the world. And when the right person comes along, they not only give you a reason to fight all the harder but help you with all of the many everyday tasks required to stay healthy and breathing. I was blessed to find Marissa, an unbelievable loving, caring, prepared woman who carries my heart, gives me hope, and takes care of me when I need the extra help.

Though it may seem impossible, CF has a positive influence. You learn to ignore the unimportant stuff and the judgment of “successful” couples and let go of visions of a “perfect” family. All of the decisions that other couples make easily become major turning points for a couple affected by CF, so we put a lot of thought, planning, communication, and sharing into our choices. Honesty is a given because a lot of simple things can be life or death.

You spend a lot more time together than many young couples, because of a) you’re stuck in one place doing treatments/at the hospital/tethered to your oxygen, and b) you’ve learned to truly appreciate the time you have together.

Every day is a reminder of life’s fragility, between the infections, hemoptysis, and gasping for air during vicious coughing spells. Having to consider the implications of an incurable fatal disease also forces you to recognize and be grateful for the time you have together.

“Love is a precious and unexpected gift in the midst of the CF trials. Knowing you aren’t alone makes all the difference in the world.” – Eric