Raising a Child When You Are Dealing with Bronchiectasis and/or NTM Lung disease

Posted on April 30, 2024   |   
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This blog post was authored by Katie Keating, RN, MS, and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee

Energy levels can be unpredictable when you are dealing with a chronic lung disease such as bronchiectasis and/or NTM lung disease. Taking many antibiotics and/or other additional IV or inhaled medications can bring on major fatigue. Not to mention, the infection and inflammation in your body can also contribute to low energy levels. Add to that the additional responsibilities of health care visits and managing your condition can cause you to use up all your time and energy during the day while your child is in school.

It is heart-wrenching to adjust to a “new normal,” not having the same energy you had before diagnosis. However, it is important to get to the point of acceptance that bronchiectasis and/or NTM lung disease are part of your life. This can allow you to move forward to be the best possible parent, under the current (although difficult) circumstances.

Parents need energy to be “there” for their children once they return from school. There was a time when I was so exhausted from the Big 3 drugs that I had to rest much of the day to have enough stamina to look at and sign papers my daughter brought home at 3 p.m.

Lifestyle adjustments are necessary when you have a chronic respiratory condition. Consider these four areas regarding energy management when raising a child:

Nutritional — Many parents have trouble mustering up the energy to shop for food, prepare food and clean up afterward. Enlist the support of family, friends and neighbors to assist you in meal prep for the week (possibly over the weekends). Focus on well-balanced, high proteinand highly nutritious meals featuring fresh or frozen fruits and vegetables since they are the key to healing and the health of your child. Try not to resort to quick-fix, “kid foods” or frozen meals with little nutritional value. An investment in good health starts at a young age. Consider having your groceries delivered to conserve your energy for putting them away instead of using energy grocery shopping.

Emotional — Fatigue lessens our ability to stay strong at times with children. You may be tired from NTM and/or the meds, but setting boundaries with your child is critical. Try not to be passive because you are tired; you deserve respect. Your goal is to achieve a well-balanced, emotionally intact child. Your child will mimic your boundary-setting throughout their lives. Your child observes your daily energy levels and can see that you may not be feeling as well as previous days. Keep the lines of communication open with your child.

Educational — You do not have to attend every event to be involved in your child’s school. Discuss the school day with your child to recognize signs of a struggle to learn. If you suspect that your child may have a learning difference, you are the biggest advocate to get your child the assistance she/he needs. Do not rely solely on the school system; please seek outside educational advocacy resources. Since the pandemic, school administrators and teachers are more open to meeting virtually. Take advantage of this and schedule meetings with your child’s teacher as needed. This can help you feel more connected to your child’s teachers and school life.

Recreation — Accept what you can and cannot do. Being involved in an activity or two is sufficient to give your child a place to release their energy. Bronchiectasis and NTM lung disease are “invisible diseases.” Some people may not fully understand the impact it may have on you. Talk about your limitations to a select few close friends or neighbors. You can also enlist their support to drive your child back and forth to activities if you cannot do the driving or attend the event.

Listen to your body. Attempt to balance rest and activity to manage your energy levels optimally. Self-care is critical. Cumulative respiratory infections from pushing yourself too hard may worsen bronchiectasis. I realize now that my daughter did not need as many activities as I pushed her to be involved in. Pace your activities to avoid doing too much.

Enjoy this time with your child.Your emotional availability will be the greatest gift in the long run. Great childhood memories are more important than being over-involved in activities that are only short-lived for most children.

You will cherish the at-home time and memories once they are grown and flown. Be proud of yourself; you are reading this article and researching tips to improve the quality of your life. All we can do is strive to be the best parent we can be, under the circumstances.

The BronchandNTM360social community is here for you. If you have any questions, don't hesitate to get in touch with me at Info@BronchiectasisandNTM360.org.