Being A Parent With CF

Even at the young age of two, I can sense my son is beginning to understand the role cystic fibrosis plays in our daily lives. He is undeniably soaking up both the explicit and implicit context of my disease even when I’m not verbally instructing him. Whether he knows his mommy is a little bit different than most mommies, I’m not quite sure yet. (I’m sure he’ll come to that realization fairly quickly when he enters school.) For now, life with CF is all he knows. The coughing, medications, and crazy devices are all incredibly normal to him. Why should you explain CF to your child? Research shows that parental chronic illness can increase feelings of guilt or worry in children because a lack information and understanding about the disease.1 In addition, an increased prevalence of behavioral and emotional problems have been identified in populations of children with parents with chronic illness when compared to populations with healthy parents.2 I believe it’s our job as his parents to help him process the experience of my disease, fill in the gaps of knowledge, and equip him with healthy coping skills for life. That journey begins now with how I talk about my disease to my young and impressionable child. How to explain cystic fibrosis to a child Age-appropriate honesty Our family’s philosophy when talking to our son about CF will always be rooted in “age-appropriate honesty”. We never want him to feel as if he’s in the dark or missing important information about my health. My disease directly affects him, and therefore we believe he deserves to know as much information as developmentally sound. Obviously, I won’t be reading off my less than stellar FEV1 numbers following a doctor’s appointment. However, I try to keep him informed about what’s happening to mommy’s body in a way he can understand and process. He’s so intuitive that sometimes it catches me off guard with how much he truly understands about my chronic illness. I am learning to give him more credit than I previously would have thought a toddler was capable of. Special helper My sweet two-year-old is fully aware mommy takes lots of medicine and does breathing treatments three times a day. It’s been that way since he realized his little hands could grab my tubing and steal my supplies. He loves to squirt my medications into the neb cups and always shouts an encouraging, “Yay! Mommy done!” after I complete a round of treatments. It’s adorable and actually a great motivation to me to see how excited he is. I have paid particular attention to keeping him involved in my daily care. Whether that means carrying my supplies to my treatment set-up, helping flush my port when on IVs, or assisting me while sterilizing nebulizer cups. By exposing him to the daily maintenance of CF care, the fear and uncertainty of medical devices and intimidating hospitals has almost been lost on him. He’s made the connection that these tasks, places, devices, and weird tubes hanging from mommy’s body are NOT scary because he knows what they do and how to help me when we use them. Sometimes, he’s even a little too helpful. Moreover, I hope he grows up believing I am fully capable of taking care of myself, but with his company and assistance, my disease is made more pleasant and bearable. I want him to feel as if he serves a special role in my care because the reality is a large part of my motivation is because of him. I'm motivated to take care of myself because he’s mine and always will be, despite CF. With that being said, I understand that CF is MY disease. Therefore, I would never expect him to take on a role that replaced his childhood responsibilities. Medication safety Often, we discuss what mommy’s medicine does in my body and how it helps me feel better. Using age-appropriate speech, I might explain my pancreatic enzymes are little “munchy bugs” that eat up the food in my belly. Usually, I will add, “Only mommy takes them because you have working munchy bugs in your belly already.” (My own mom used this analogy when I first started taking enzymes as a child.) My goal is for him to be safe around the many medications and medical supplies scattered around our home. I try to keep things out of his reach with locked caps or stored away. However, if we are being completely honest, it's not always possible and these items need to be accessible to me. We have made a point in modeling what to do if he finds a misplaced pill, vial, or device around our home. By instructing him to leave the item where he found it and then showing me the location, he is beginning to understand the handling of medications is a sole responsibility for mom (or dad), definitely not for him. Sometimes he will ask to “hold” my medications such as my pills, and I simply tell him “no” and offer another way he can be helpful right now. I want him to understand while medications are common in our household, they still can be dangerous and require help from adults to keep us safe. Have you talked to your child about CF? Do you have practical tips to help little ones make sense of CF? Read on to Part 2 of Taking To My Young Child About CF where I share some extended practices we will use with our son as he grows to understand more about CF and how it affects him. Register to be part of our community today! [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] All my life I knew I’d be unable to have children biologically, but I never saw that as an obstacle to becoming a mother. I knew from a fairly young age that I wanted children and I knew I would make it happen. I just wasn’t sure how. My desire for motherhood Maybe some people don’t think about becoming parents, it just happens or seems the next appropriate step in life. However, I started planning early for parenthood. Knowing my CF would only progress with age, I started worrying about whether I’d ever get to have a family or be healthy enough to run around with my future kids. Since I couldn’t have children naturally, I had three options: adopt, surrogacy, or fostering. I knew adopting and surrogacy would cost more money than I could afford and I knew fostering would be challenging, especially with CF. Truthfully, I felt I would never find the right path. So, I continued working to pay off my college debt and doing everything I could to keep my health in the best shape. My hopes for a future family motivated me through my 20s. Building my family As luck (or fate) may have it, I ended up meeting my future husband 2 years later (age 27). I discussed children early on in our relationship to prepare Andrew, as my inability to have kids ended a few relationships in past. Andrew understood and said even if I could have kids biologically (some patients with CF can) that he wouldn’t want me to risk it. He had two adopted siblings and loved the idea of adopting and fostering. We married 3 years after we met and started looking into options for kids right away. We still hadn’t decided what route to take yet. We started pursuing all the options. We called adoption centers, talked to others who went through surrogacy, and decided to sign up for foster classes. We knew very quickly into foster classes that it was what we going to do. Our hearts just kept leading us there and we couldn’t stop talking or thinking about fostering. It's not easy It’s been a roller coaster ride since. We have fostered for 2 years. We have had 4 long term placements and have done respite (short term care) half a dozen times or so. Our first placement was a sibling set of three kids. Boy, going from zero to three kids with specialized needs was… well ROUGH. But we fell in love instantly. Some foster parents warned us to not fall in love, but we don’t understand how not to. These kids need a home, to feel safe AND LOVED. Every single kid we have met has taught us so much. Taught us about the world, the realities these kids face, and even taught us about ourselves. We still have one kiddo in our care currently, we have had him since 2017. We plan to foster more as we can. And yes, it can be very challenging, especially since I have cystic fibrosis. But I love how our life has unfolded and wouldn’t change any of it. Motherhood with cystic fibrosis And while fostering might not be the right choice for everyone, it’s the right fit for our family. It’s a complicated feeling though. Being happy to have kids in your home and loving them, but realizing at the same time you are a mom because someone wasn’t taking care of these children. That they were hurt, neglected, or unsafe. I try to think about how I can help them in this time of need. Seeing them thrive, learn, feel safe, smile, and giving a hug - these moments outweigh the challenging ones. I do worry about how my CF will affect our kids, but it keeps me motivated and all of our children have accepted it and I think it has helped them bond with me in some aspects. Having CF and fostering do impact each other, but that’s a story for another time. However, it’s one way I’m thankful for CF. If I didn’t have CF, would I have still fostered? I’d like to say yes… but I can’t be certain. I’m thankful my life led me to fostering. I’m glad for my family (all our kids included). Families are all unique and created differently. Becoming a parent isn’t for everyone, but for those who want a family, just keep at it. You never know how things might turn out. [poll nexus_id="2323"] [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] Every year before winter hits, we like to enjoy the outdoors and go out with a BANG! My husband and I foster children, so depending on number, age, and interest of kids, we plan some type of trip or family activity. Planning family activities with CF We currently only have one kiddo, a 4-year-old who LOVES going to the local zoo (he has been with us since 2017). We live only 2.5 hours from St. Louis though, and usually visit the St. Louis zoo once a year. It’s quite a lot larger than our local zoo and our kiddo really enjoys seeing some of the different animals - like kangaroos. I knew the day trip would take some planning, due to my cystic fibrosis. Here are just a few of the things I do to ensure we are prepared and can fully enjoy our day: We get up early, pack snacks (high calorie for me), water, sunblock, extra clothes (for kiddo), bring my nebulizer machine, 7 nebulizer cups, and 7 therapy meds (some in a cooler to keep the meds refrigerated). I make sure I have some ibuprofen, enzymes, inhaler, and allergy meds in my purse. I grab a couple toys for our kiddo. I do my morning and evening set of nebulizers on the ride to and from the zoo. Otherwise, we would leave much later and have come home a lot earlier. This helped to maximize the amount of time we have in St. Louis. Overcoming barriers to participating in family activities This year, my lungs were not doing the best that week. I had dealt with a cold earlier on, so my typical 48% lung function was probably closer to 40. I knew walking the entire zoo would be too much and I didn't want to ruin my experience by wearing myself out. Luckily, I have a helpful and loving sister that always volunteers to come with us on trips. Andrew and I pay for her ticket to the zoo and parking as a small way we can thank her. She says it’s not necessary, but I insist. We always joke her job title for the day is, “Wheelchair pusher, water encourager, and sunblock applier." I could not have made it through the zoo without her. By the end of the day, I was exhausted and I didn't even walk it. My husband is a super dad for sure, but I think he would struggle to push a wheelchair and stroller at the same time. How do you find a stroller that attaches to a wheelchair?!? Taking time to care for myself Anyway, once at the zoo we have fun, but we have to remember to go slow. We make sure to drink lots and eat lots. I start to feel really cranky if I’m even the slightest bit hungry. My body is very aware of when I need to refuel and everyone around me can tell. CF causes my body burn calories faster, and the sun drains my energy too. I have multiple medications that make me particularly susceptible to the sun. I wear a hat typically and reapply sunblock more often than the bottle says. If we rest, I aim for a shaded spot. Understanding my limitations during family activities I know my limits and I know need to watch them. But, we bring my sister along to make sure I listen to my own needs. If I overdo it I can end up sick and miserable the rest of the week. It’s hard not being able to push my kid around in his stroller or be the one to pick him up to see the animals. But that is okay, I’m part of the experience and I’m glad to make these memories. I know the limits of my body. I’m thankful my husband and sister can help me during these fun family activities. I won’t let CF hold me back from fun activities, events, and trips. Even though the travel is rough on me, I absolutely love the memories I’m making with my family (and all the kids we foster). I just have to be a little more careful, work a little harder, and plan a lot more. Simple trips end up a little more complex than usual. But, in the end, it’s always worth it. How do you plan for family activities with CF? I'd love to hear your tips and tricks in the comments below! [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"],

Being A Parent With CF

Talking To My Young Child About CF (Part 1)

My Journey to Motherhood: A Mom with Cystic Fibrosis

Family Activities with CF Involve More Planning

Community Poll

Planning for Motherhood: Health Considerations

Becoming Mom: My Path to CF Motherhood (Part 1)

My Morning Routine - Investing in My Health & Myself

Planning for Motherhood: Practical Considerations

Becoming Mom: My Path to CF Motherhood (Part 2)

CF and Infertility After Pregnancy

Talking To My Young Child About CF (Part 2)