Supporting someone you love with cystic fibrosis is a great way to show how much you care and value their experience living with a chronic illness. Support from friends and family can really be beneficial to our physical and mental health in various ways.\r\n\r\nHowever, it’s never easy to know exactly how to help. You may worry you might say or do the wrong thing or have no clue even where to start. Whether you’re a parent, family member, friend, colleague or significant other, here are some tips to help guide your loving support.\r\nAssist with the day-to-day\nMake a meal\nFood seems to be the love language of many people with CF--true in my case! Offer to make a meal for someone with CF or their family to help lessen the load. If you want to be especially thoughtful, provide a meal during times of health and stability as well, not just during sickness.\r\nOffer childcare or pet care\r\nFor adults with CF and families with children with CF, especially during exacerbations or hospital stays, consider offering help with childcare or pet care. Often the stress of finding care for children, siblings, and pets is a barrier to prioritizing care. Stepping in to offer your assistance truly shows how much you care about our well-being!\r\nBe mindful of spreading germs\r\nStaying mindful of the transmission of germs in your daily life is one of the best ways to show your support--not just during cold and flu season, but every season! Try to think of it as every time you wash your hands, cover your sneeze or cough, get your flu vaccine, or stay home while you are sick, you are sending love to the CF community.\r\nHelp manage their care\r\nI always feel most supported when a loved one offers to help manage my CF care. Whether it’s picking up prescriptions, sanitizing nebulizers, or setting out supplies, those small actions are really helpful in the grand scheme of care because it’s one less task to be completed. Lessening the mental load periodically often makes a big difference in mental health.\r\nMonetary support\nConsider gift cards\r\nGift cards are a great way to monetarily show your support for someone living with cystic fibrosis. Because gift cards offer the recipient flexibility on usage, they are perfect for times of CF exacerbations, hospital stays, or celebratory doctor appointments. Food establishments, Amazon, and self-care services such as massages are all excellent choices to show you care!\r\nSupport cystic fibrosis fundraising events\r\nI feel like this one goes without saying: supporting fundraising events benefitting cystic fibrosis--whether with your time, money, or talents--truly makes a difference in your loved ones’ lives. Better treatments, medical care, and quality of life are the result in part from various fundraising events and your participation. So, thank you!\r\nMoral support for loved ones with cystic fibrosis\nWrite an encouraging letter\r\nSometimes encouraging words are the perfect way to offer a little support to someone with cystic fibrosis who is struggling or needs to be reminded how great they are. Let them know you are proud of their dedication to taking care of themselves. It always helps to know there are people who are continually cheering you on when you lack motivation!\r\nPlan a fun day out\r\nA day of distraction from the stress of CF is always a fun way to help show your love. Plan a special day out that includes quality time that isn’t focused on their health--but them as people. Your day doesn’t have to be expensive at all. Pack snacks and visit the local book stores, parks, beaches, etc.\r\nListen and ask thoughtful questions\r\nWe all need a safe space where we feel we can talk about difficult things and feel heard. Because CF can be so isolating, sometimes it feels out of place to discuss CF life with healthy people. The best way to show you care about our experience is to listen intently and then follow up with thoughtful questions. Make it known you are there for us as a willing listening ear!\r\nPay attention to politics\r\nPaying attention to what’s occurring in your local, state, and federal governments is a significant way to show your support to a loved one with cystic fibrosis (honestly, any chronic illness). Policies concerning health care and health insurance, as well as Social Security benefits and safety net programs widely affect those living with CF and their families. Be well-read to be well said, and don’t forget to vote!\r\nHow do you support loved ones with cystic fibrosis?\r\nAs they always say, “It’s the thought that counts” and I truly believe that's true. Hopefully, these ideas can add to the ways you can support a loved one living with CF.\r\n\r\nWhat ways do you show your support for a person with CF in your life? Share with us!\r\nJoin our free cystic fibrosis community\r\n[lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] Cystic fibrosis, in most instances, requires frequent hospital stays for everything from a “tune-up” to a full-blown lung exacerbation and much more. Often, this demands that a parent is courtside to their child’s bed, taking a crash course in all things respiratory.\r\n\r\nGiven the hardships at home and work aside, there is a wide variety of “tricks of the trade” that can help to ease the stress of spending 15+ days managing a child while in-patient.\r\nSleep is a hospital stay pre-requisite\r\nWhile it may be an oxymoron that there’s no rest for the weary in a hospital, as a parent, sleepless nights make for foggy days. When your stress level is already at an all-time high, counting sheep is definitely not going to get the job done. At the advice of a nurse, I once resorted to Advil PM in the wee hours of the morning, only to find out that my 4-year-old went sleepwalking down the hall and I slept through it all. We needed a more practical alternative.\r\n\r\nWindow seats and convertible chairs can serve their purpose for a night or two, but my husband and I found great relief in the purchase of a high end, zero gravity camping cot. It collapsed and stored in the hospital room easily. However, when coupled with a snuggly sleeping bag, its built-in padding made catching Z’s more probable than problematic.\r\nDear diary\r\nJournaling can take on a completely new meaning while in-patient. The stillness of the night is definitely when the questions and concerns from the day have a tendency to overwrought an already stress-filled mind. Having an outlet with which to jot down questions for residents and interns during rounds can quickly clear your mind towards a more meaningful conversation in the morning, even if the coffee hasn’t brewed yet.\r\n\r\nHowever, taking notes while speaking with medical staff, even discharge planning nurses, offers caregivers a detailed record to rely upon for everything from scheduled tests and results, to orders for home-based care and insurance-related matters.\r\n\r\nIn this day of technology, a laptop is handy, but can at times not be as practical as a notebook. During subsequent admissions, this journal is a quick lifeline to previous meds, side-effects, test results, etc.\r\nThe fine art of packing\r\nPacking for a cystic fibrosis hospital stay has changed over the years and truly depending on the age of my child, has been streamlined. As a toddler, it was survival at all cost. That meant a consistent variety of toys to switch out of the crib.\r\nToys and entertainment\nInfectious disease protocols have increased so, depending upon the care center, many toys for a CF patient can not go back and forth to the playroom. It was commonplace for us to arrive for hospital stay with a PlayStation in tow so that we were not monopolizing the few sets that were available, but also so that we did not need to worry additionally about cross-contamination.\r\nA checklist of must-haves\r\nAfter a number of years, we started an itemized checklist: high fat/salt snacks, slippers, Clorox wipes, chargers for all electronics. We submitted requests for an in-room microwave and a small fridge, packed personal care items for both my child and myself as well as comfortable clothing, hospital gowns aren’t always required.\r\nMedications\r\nWe were very fortunate in that our care center permitted the inclusion of our own meds. Stowing our own enzymes and vitamins made mealtime and snacks more practical so as to not have to wait for the pharmacy to send meds.\r\nA touch of home\r\nAnd of course, the sprinkled touch of “home” was an absolute priority with photos and posters of friends and family alike. During a holiday admission, we decorated my child’s room from floor to ceiling with Times Square panels so that our teenager could still feel the excitement of ringing in the New Year.\r\nTime out\r\nTaking care of yourself as a caregiver during a cystic fibrosis hospital stay is not easy but it is definitely a must! Bringing along a Kindle, a book, or a laptop; distractions always help. However, getting out of the room and taking advantage of some fresh air can work wonders.\r\n\r\nMy husband would often wake before our son and take a cup of coffee to the outside garden for some basic privacy and the opportunity to relax in the morning air. I would pack my running sneakers and after giving the nurses a heads up, going out for a morning run would give me the same quiet mind and stress release to face the day ahead. I will never forget the nurse who talked me into a run after a particularly difficult night knowing it would reset my mind, and it did.\r\n\r\nWhether it was a walk around the hospital campus with my child or a stroll for ice cream and coffee, getting out of the room (while keeping protocols in mind) was vital for both our mind and body.\r\nAging out of sleepovers\r\nIndependence comes at a cost and in this case, the price was my heart. Somewhere around the age of 17, my child decided that he could handle the overnight activities of the hospital all on his own. I was for all intent and purposes, fired from my job!\r\n\r\nThere is a certain rhythm to the routine of the hospital stay and the morning tends to be the busiest with rounds, therapy, meds. Naps are sure to follow in the early afternoon and with Xbox Live, there’s a never-ending line of friends willing to jump in on a game of Madden.\r\n\r\nWe found the next chapter of parenting had us coping with cystic fibrosis hospital stays coupled with a full day at work. We quickly moved from sleeping on the cot and heading to work during the day, to sleeping at home, working, and then having family dinner on tray tables, bedside. However it was managed, time together is vital for his support.\r\n\r\nIn the end, his strength and confidence sent us home. Our organized lists and notes set the stage for how he now handles himself and his own healthcare. What more could we ask for?\r\n\r\nRegister to be part of our community today!\r\n\r\n[lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"],It's just about impossible to keep a steady daily routine when you have a baby with cystic fibrosis (or a baby at all, really). Here's what an honest morning routine looks like from a CF caregiver's perspective.\r\n\r\n6:30 A.M. – My alarm rings. I open my eyes and think about all the things I can accomplish in the hour before the kids wake up if I get myself out of bed right this very second...\r\n\r\n7:15 A.M. – I awake to the sound of my 1-year-old talking loudly to himself in the crib. He’s saying “Bye! See ya!” so I hope he’s still in there and not really leaving. Do I have time to shower? I should get his chest PT done first and hope the 3-year-old stays asleep a little longer.\r\nStarting our daily routine\r\n7:25 A.M. – Finally get out of bed and tend to the 1-year-old whose diaper has leaked pee through his pajamas and into his sheets. I’m less worried about that and more focused on not getting kicked in the boob as I change his diaper and clothes while he screams “Noooo! Daddy!” right into my eyes. Good morning to you too, son!\r\n\r\n7:35 A.M. – With the younger one dry and dressed, we head downstairs for his morning treatment. Upon seeing the Xopenex inhaler and spacer, he tells me “Noooo! Eat!” and tries to open the fridge. I know it’s best for him if we get treatment done right away, so I explain we have to do that first. He’s one and doesn’t care and runs away.\r\n\r\n7:40 A.M. – He’s finally taken two puffs from the inhaler and we settle down with our percussors for manual chest PT. Wait, does he stink? I try to get started before giving him a new diaper, but he’s miserable and yelling “Noooo! Poop again!” so we head upstairs to change the poop.\r\n\r\n7:50 A.M. – More boob kicking, this time while I try to wipe and dodge and keep him clean. He ends up needing new clothes anyway.\r\nCan we do chest PT with the baby now?\r\n8 A.M. – Back downstairs for chest PT. He’s calmer now so we’re off to a good start.\r\n\r\n8:04 A.M. – 1/6th of the way through PT and the 3-year-old is yelling for Mommy. I hear Daddy get out of bed and, foolishly, offer to help. The older one hasn’t let Daddy help him with anything ever, but maybe this morning will be different? I try to continue with treatment, but the younger one knows everyone is awake upstairs and I think he stinks again anyway.\r\n\r\n8:10 A.M. – I go to the older one’s room and his face lights up. He loves his little brother and he loves me and he doesn’t love Daddy, so that’s why he was screaming. I should have known! I explain that the baby needs a diaper, so maybe Daddy could help him go to the bathroom and pick clothes for the day. That’s the opposite of what everyone wants, so when the screaming starts again, from both kids this time, Daddy knows to just take the baby for his third diaper of the hour. Did I make coffee yet?\r\nDistractions, distractions\r\n8:25 A.M. – Even though it has been almost 14 hours since he used the bathroom, the older one insists he doesn’t have to go. We need to get treatment done, and I haven’t even thought about breakfast! The baby is changed and the unwinnable potty fight has gone on long enough, so we head back downstairs.\r\n\r\n8:27 A.M. – Just as I restart percussion on the baby, and we hear Daddy turn the shower on, the older one has to pee. Of course, his step stool and potty ring are in the bathroom upstairs and, of course, he can’t do it by himself and, obviously, he really needs his brother to be in the bathroom with him while he goes, so we all head back upstairs.\r\n\r\n8:29 A.M. – Bathroom party! Sorry, Daddy. Maybe you can have privacy when they both move out.\r\nWe're still not done with CF treatment?\r\n8:35 A.M. – Back downstairs since I NEED to finish the baby’s treatment! Is it okay if it’s all spaced out like this? Is this how it happens every morning? Did I make coffee yet?\r\n\r\n8:38 A.M. – I find a YouTube video on my phone to hypnotize everyone just long enough to finish PT. It’s probably about Elmo or learning colors so it’s fine, right?\r\n\r\n8:50 A.M. – Treatment’s done. I don’t have time to shower, but I do finally make a cup of coffee. Two rooms filled with toys should keep everyone occupied long enough for me to continue our daily routine, make breakfast, and get the rest of the baby’s cystic fibrosis medicine together.\r\nWishful thinking\r\n8:51 A.M. – I am wrong. It’s not time for toys. Both kids let me know, loudly, that they’re hungry and apparently this message won’t get through unless both of them are crying and touching me. Actually, it would be best if I could just hold them both right now.\r\n\r\n9:15 A.M. – Somehow, oatmeal with peanut butter, strawberries, the older one’s water, and the younger one’s milk, complete with some salt and his morning Miralax dose mixed in, all end up on the table. The older one starts eating right away while I prep the baby’s applesauce and Creon. That fast, he has reached the milk on the table and downed half of it. I scoop him up and give him his enzymes while mentally preparing for the inevitable greasy poop explosion later in the day.\r\nWe made it!\r\n9:20 A.M. – Daddy comes downstairs to a surprisingly serene breakfast scene and compliments me on my amazing parenting skills. I try to remember if I actually did put Miralax in that milk.\r\n\r\n9:45 A.M. – The kids are fed and cleaned-up so now they’re happy to hang out in their two rooms filled with toys. Actually, they both want the same toy and actually, it’s not a toy at all; it’s an attachment to the vacuum cleaner. As I dose out the baby’s Famotidine, I find my coffee, now room temperature, on the counter. “Just remember to share!” I call out as I swallow my first sip.\r\n\r\nWhat does your daily routine for a baby with cystic fibrosis look like? Share in the comments below!\r\n\r\n[lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"],Going back to that Friday afternoon in August 2008 is still difficult for me to do. I was fatigued. I had an 8-day-old baby that wasn't eating or sleeping. I was emotional and trying to figure things out. I had this beautiful son who was so small and so fragile. That afternoon was quiet, so we took a nap on the sofa together, just he and I. We were both exhausted. I went to sleep as one mother and woke up a different one altogether.\r\nMy child's cystic fibrosis diagnosis\r\nMy husband received a call from our son's pediatrician that his newborn screening had come back. She had said he needed a sweat test that Monday to confirm cystic fibrosis. As I called the doctor back to talk to her myself, I looked at my husband. His head was in his lap, shaking from crying. The rest of the day is a blur.\r\n\r\nI spent that entire weekend in a fog. Monday before we left for the hospital, I stood in the shower, crying, praying, and trying to figure out what I had done to make this happen. Our life that we knew was now different. Happiness no longer existed in my world. How could it? My new son was just diagnosed with a life-shortening disease. It was something that I couldn't seem to wrap my head around.\r\n\r\nThere are things that, looking back, I wish that I would have known. If you are now facing your child's cystic fibrosis diagnosis, please remember:\r\nDo not Google\r\nThe Internet is an excellent resource for research. However, I think one of the most detrimental things that I did was type "newborn cystic fibrosis" into that search bar for the first time.\r\n\r\nLIFE EXPECTANCY. MORTALITY. TERMINAL. It was all there. Every link after link that I clicked was filled with bad news. In hindsight, what would have been best was to stay clear of the computer completely. All I read was worst-case scenarios, and all that did was increase my anxiety. Your research should come from websites backed by medical professionals and/or sites that are heavily monitored.\r\nThere is support available\r\nI had no idea that there were communities, even back then, that were available for me to join for support. Seeking support outside of my family would have made all of the difference in the world. I could have talked myself through the feelings and anxiety that I was feeling and, in turn, heard stories from other mothers that had gone through the same thing.\r\n\r\nReach out to one of the many support communities on social media. Get a therapist. I have one, and it's been great to have her listen to the things that I have in my head. The good and the bad. Therapy has been a great tool to have available to me.\r\nWhat you are feeling is valid\r\nHearing that my child has been diagnosed with cystic fibrosis was a scary thing. There are a lot of unknowns with the disease, and there is a lot to learn. It is overwhelming. It is an enormous undertaking and it isn't easy. There are going to be some dark times, and there are going to be some unsteady times. What you need to remember is that everything that you are feeling and everything that you are thinking is completely normal. Feel what you need to feel and move forward. You are your child's best advocate. In order to be their voice, you need to allow yourself to experience every emotion and thought that you need to.\r\n\r\nWhile this is not a diagnosis that I wish my son had been given, it hasn't been the death sentence that I was so sure it would be. There have been some worrisome and rocky times, but we have a great team of CF doctors that are on our side, and that put our son's best interests first. As the years pass, more resources become available. I no longer feel alone. I feel surrounded by an army of people who I know are willing to listen. Navigating raising a child with cystic fibrosis can be emotionally taxing, but you are never in it alone.\r\n\r\nShare your favorite tips for caregivers in our forum.\r\n\r\n[lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] On August 25th, 2017, I walked down the aisle at the top of a mountain to commit to a lifetime with my cystic fibrosis caregiver husband, Kyle. In our handwritten vows, we each promised to love one another through it all, in sickness and in health. That phrase has unique meaning for us as the difficulties of CF had both challenged us and deepened our bond from the day we decided I was Kyle’s girlfriend and he was my boyfriend.\r\nWhere it all began\r\nKyle and I met at our freshman orientation, before college had even begun. In 2009, he had the shaggy haircut that most boys were sporting that year, and I scanned across the room and hadn’t yet noticed him. When we went around the room saying our names, as an icebreaker, we needed to add an adjective to it that began with the same letter. Kyle was "Kind Kyle," and from that day on, I got to experience him living up to his adjective day in and day out. Kind Kyle and I were fast friends once we realized that:\r\n\n \tWe shared the same birthday, and\n \tWe loved skiing (for him - snowboarding) at Sunday River in Newry, Maine.\n\r\nSo when move-in day commenced in September, I was happy to find Kind Kyle lived right upstairs in my dorm. It only took a semester for us to realize that we were meant for one another and in late January we finally made it official.\r\nExperiencing and understanding my CF\r\nBy then, as my BFF turned BF, Kyle had already experienced my CF in many of its forms. Whether that meant studying in my room with me while I did my vest, having to walk back to my dorm because I forgot my enzymes, or sending me texts and facebook posts when I had to live at my parents’ house on IV antibiotics during first semester.\r\n\r\nWhen Kyle and I decided to be a couple, I didn’t need to reveal anything about CF — he had made that decision despite it all. Through it all, Kind Kyle has been, quoted from my vows: “My rock, my chicken nugget, my buddy, and my reason for breathing. It’s a miracle that you never flinch at the challenges my crazy life has brought us, and we have grown stronger together through it all.”\r\n\r\nI thought it would be fun to hear from Kyle directly how CF has and hasn’t affected our lives. What follows is an interview with my hubby who has the good fortune of loving someone with CF!\r\n\r\n\nMy interview with Kyle\nWhen did you first realize I had CF? What was your first impression of me as a person with CF?\r\nI found out first semester of freshman year that you had CF. I don’t remember exactly when you explicitly told me you had CF, but I remember going back to my dorm room that night and Googling CF. My initial reaction was that it didn’t seem fair that somebody who was so positive and infectiously happy would be burdened with something that could potentially shorten their life.\r\n\r\nI knew you well enough before I knew you had CF. When I found out you had CF, it didn’t change my definition of you. When I found out what CF was I felt scared when I saw the average life expectancy, but your infectious spirit and passion for life continued to draw me closer to you.\r\nWhat made you so steadfast in your commitment to me despite my CF?\r\nLove. You made it easy for me to love you and not let CF get in the way of that because of how you choose to live your life. You don’t let CF stop you from living life the way you want to, in fact, due to your CF we probably live a healthier lifestyle today than we would otherwise.\r\nWhen I get sick, what are some of the things you help me to do as my CF caregiver?\r\nI try to do as much as I can so you only need to focus on getting as much rest as you can get. I clean, cook, make sure your water bottle is filled, wake up early with the dog, make sure your meds are done, and I’ll do extra chest PT or pretend I know how to do Reiki as best as I can.\r\nWhat challenges have CF presented?\r\nI don’t think there’s anything huge that we haven’t been able to do because of CF. Most of the challenges we deal with revolve around the day-to-day operations of CF. Sometimes we make decisions to skip going out with friends because rest is more important; sometimes we stay up late because another vest treatment will make you feel that much better the next day; sometimes we forget to refill your purse with enzymes, but luckily we have stockpiles almost everywhere!\r\n\r\nSeriously, where DON’T we have a bottle of enzymes?\nWhat did you say in your vows?\r\nThe overarching theme of my vows was that I would be your support system in any way you needed. Even though we wrote our own vows, I wanted to include portions of the traditional vows, especially “in sickness and in health” because even though CF doesn’t define our relationship, it has played a role in shaping the lifestyle we choose to live. CF has brought us closer in some of its ugliest moments and made us both appreciate our health.\r\nBuilding a life together\r\nKyle and I have had to live out our vows several times since saying “I, Do.” One thing is for sure, our love prevails over all of the challenges CF and (life in general) has presented every time. We have grown as a couple after some of the hardest times. We have dealt with the emotional toll that a potentially shortened lifespan presents, together. And thanks to Kind Kyle’s and my attitude, we hold each other’s hands and are ready to face the future with CF — together.\r\n\r\n\n\nHow has CF affected your relationships? Share your story.\r\n\r\n[lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"],It is not easy to learn that your child has CF. Even though the CF community has come a long way in advancements in treatment and care, having a child who is newly diagnosed with cystic fibrosis is a scary time that is filled with many unanswered questions. It is natural to feel worried, afraid, isolated, or confused.\r\nYou're not alone\r\nThere is an entire community that understands what you're feeling. Many parents have felt the same way, and they are more than willing to share their words of wisdom.\r\n\r\nWe reached out to the Cystic-Fibrosis.com Facebook community and asked them to share advice for parents of children who have recently been diagnosed with CF. We are so pleased to say that we had an outpouring of advice, support, and love.\r\n\r\nWatch the video to see some of their responses!\r\n\r\n\n\n\n\n\n\n\n\r\n \r\n\r\nWhat advice would you give to parents of children who are newly diagnosed with cystic fibrosis? Share in the comments below!\r\nFollow to hear more from us\r\nFollow Cystic-Fibrosis.com on Facebook, Instagram, and Twitter, and don't forget to register on our free online community!