Being a parent with cystic fibrosis can be difficult, but a strong support system can help. By learning more about what to expect as a parent with CF, you can find new ways to balance your own health with the time it takes to care for your child.

The First Two Years

As a parent with cystic fibrosis, you will likely have questions related to taking care of your child as you also strive to take care of yourself. On the one hand, having a child will likely increase your motivation to stay healthy in order to be there as long as possible and keep up with the physical demands of parenthood.

At the same time, it can also mean that you have less time to maintain your health and complete your daily CF treatment routine. Parents with CF are, therefore, faced with the unique challenge of finding ways to fit in a time-consuming treatment plan while also providing for their child's needs.

The Challenges of Infancy

As a new parent, you will face the same challenges as any other parent when it comes to caring for an infant, including stress, questions about breastfeeding, sleepless nights, and adjusting to a new routine.

When you have CF, however, you are not necessarily able to temporarily put your own needs on hold and focus solely on the health of your newborn baby.

At this stage of your child's development, you will likely be facing the significant challenge of balancing the time it takes to care for yourself with the time it takes to care for a baby. For this reason, it is important that you are able to rely on your partner, spouse, family, community, or another form of support to take over some of the childcare duties so that you can devote the time you need to your daily CF care.                                                              

"My doctor told me that in order to be a good mom, you have to put yourself first. My wife has made that possible. When I'm resting, she knows she's on duty. I can't imagine not having a family support system. It takes a village." -- Sarah Foose, adult with CF

If you find yourself getting too busy or forgetting treatments, it is important that you talk to your CF care team. It can be easy for new parents to put their children before themselves, but having an open discussion with your care team can help you arrive at tips and strategies for finding a treatment plan that works for you.

Watch the video below to hear Jenny Stump, a mother with CF, discuss:

  • The challenges of fitting in daily CF care while caring for a baby
  • Her own tips for managing your health as a parent with CF

Parenting a Toddler

As some parents with CF have noted, being the parent of a toddler comes with a unique set of challenges. This is the time when your child is developing new language and motor skills, which often means that they are highly active.

“There are so many physical demands as a mom -- especially when your kid is a toddler. If I hadn't worked to optimize my health, I don't know how I would keep up.” -- Sara Dunn, adult with CF

Keeping up with a toddler can sometimes cause shortness of breath, fatigue, and other complications related to doing higher-than-normal levels of activity as a person with CF. Parenting a toddler can require a great deal of physical energy, so it is important to talk to your CF care team if you are struggling to keep up with your child because of your health. By partnering with your care team, you can discuss possible strategies or adjust your treatment plan to help meet your changing needs.

Your Child, Your CF, and School

As the parent of a school-aged child, you will face several unique challenges related to your cystic fibrosis. One of these is the issue of germs. Parents know their children can pick up germs while they are at school. When you have CF, it can be difficult to balance the everyday responsibilities of parenting while also avoiding colds and common illnesses.

“When my kid is sick with something he picked up at school, it's hard because I know the best thing for me is to keep my distance. Yet, your first instinct as a mother is to care for your child, so it's difficult when I'm unable to stay by his side during his times of need. My husband takes on a much bigger role during these times, and will be the one to take off work, bring him food or medicines, and handle anything else my son may need. It can be an emotional experience and I could not get through it without the support of my husband.” -- Adult with CF

Explaining common infection prevention and control practices to your child in an age-appropriate way can help you establish rules and boundaries for staying healthy. By helping your child understand how germs spread and the importance of avoiding them when you have CF, you can ultimately help reduce your risk of getting sick in your everyday life.

“I almost didn't even tell my child's pediatrician about my CF, but it came up. He was extremely helpful and asked what he could do to accommodate me ... including keeping me away from his other pediatric CF patients, allowing me to come through the back door, or go right to an exam room to avoid the germ-filled waiting room. I would not have thought to ask for any accommodations from my child's pediatrician, so I'm glad I had that experience.” -- Kristin Dunn, adult with CF

In addition, your child's teacher, guidance counselor, and school nurse will all be important allies in helping to assess how your child is dealing with your illness. For this reason, it is important to reach out and maintain good communication with the staff at your child's school.

Helping Your Child Cope With Your CF

You, your child, your significant other, or other family members may need help coping with the added stress of parenting and all it entails. Your care team can help you and even connect you to other parents with cystic fibrosis. Do not be afraid to admit that parenting is causing you and others stress.

There will be times when you will need to be hospitalized or experience an exacerbation, and you may worry about how this will impact your child. For example, you may feel as though he or she will experience trauma from seeing you ill so frequently or negatively react to the unexpected separation. Working with your CF care team, reassuring your child that you will only be gone for a short time, and encouraging family members to play a larger role during the times when you are sick or away are all strategies for helping your child feel more at ease.

Many parents with CF have found that being honest with their child and answering any questions about what is happening to them is an effective strategy. By including their child in discussions about CF, some parents feel that they are able to help their child cope and create a family bond. Your CF care team may be able to give you some ideas of what to say during these discussions or help you practice beforehand. No matter what you decide, it is important to share an appropriate amount of information for their age and stage of development.

“My 3-year-old daughter knows I have lungs that are not strong and that I'm waiting for lungs that are strong. When I was listed, we told her that everyone has weaknesses they need to work on and my weakness is my lungs.” -- Sarah Foose, adult with CF

Sometimes, the conversations with your child may be more difficult. For example, if you are waiting for a lung transplant or starting palliative care, you may need to prepare your child for when you are no longer around. Although preparing for something like this hardly comes naturally, your CF social worker may be able to direct you to resources that can help.

Watch the video below to hear parents with CF and Mike Boyle, M.D., FCCP, discuss:

  • How and when to tell your child you have CF
  • How parents with CF can incorporate their child in their care

Balancing Your Health and Time Management

Being a parent with cystic fibrosis is a hard balancing act that requires you to make difficult choices. For example, when it comes down to either doing your treatments or spending time with your child, it can be easy to neglect your own health and de-prioritize your needs.

It is important to develop a daily routine that enables you to do your treatments so that you can maintain your health. Work closely with your CF care team to develop a treatment schedule that works for you, and rely on your partner, friends, or other family members to babysit when you need some time to focus on yourself. Being a parent with CF can be difficult, but having a strong support system can help make it a bit easier.

Listen to parents with CF offer their own tips and strategies for:

  • Balancing CF with family time
  • Raising a family when you have CF
  • Avoiding germs and prioritizing your own health

Involve Your Family

When it comes to balancing your health as a parent with CF, it is important that you do not take on all of your daily care yourself. This means being open about your CF and incorporating it into your family life.

Depending on your child's age, asking your child to assist you in small ways can help normalize CF in his or her daily reality and routine. For example, some parents ask their child to bring them a glass of water for their oral medications, vacuum the house, or spend time with them as they do their airway clearance techniques (ACTs).

To incorporate exercise, other parents will look into a parent-child movement class when the child is still young or take their child on regular walks.

No matter what you decide, there are many ways for you to get your child involved in your care as a natural part of your everyday life.

Listen to Your Limitations

Many parents with CF have said that one of the greatest lessons they had to learn was that they can't do everything on their own, no matter how much they may want to or believe that they can. For this reason, knowing your limitations is an important step toward effective time management.

When you are not feeling well or need time to rest, it is important to listen to your body and set aside the time you need to take care of yourself. Leaning closely on your friends and family is one great way to do this, but you can also try using creative parenting strategies to help balance your multiple responsibilities. For example, you may not be up to for taking your child to the park, but you can try finding other ways to spend time together that do not add stress on your health, such as doing a puzzle, reading a book together, or watching a movie as you do your treatments. 

When evaluating your abilities and your limitations, it is important to be honest with both yourself and your CF care team about what you are struggling with. For example, ask yourself which therapies are the most difficult for you to fit in your everyday life or what gets in the way of your daily treatment plan, and bring this up during your next clinic visit. By being honest about your limitations, you can ultimately find new solutions for fitting in your treatments while also focusing on parenting your child.

The Importance of Support

As previously noted, establishing a support system that you can rely on in times of need is the key to being the best parent that you can be. Watch the video below to hear Carrie Giddens, a mother with cystic fibrosis:

  • Discuss the importance of support
  • Offer her own tips and strategies for parenting with CF

Parenting with CF can be stressful, and you may sometimes feel as though your spouse, partner, or other family members are experiencing an emotional impact from having to “pick up the slack” of parenting. Talk to your care team and encourage your family members to be honest about how they are feeling. By taking the time to talk through any issues and establish multiple levels of support, you can ultimately help reduce stress and take better care of your yourself, your child, and your entire family.

Watch parents with CF and clinicians discuss:

  • Motivating yourself in your daily CF care
  • Incorporating CF into your family life
  • The importance of having a strong support system

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