What Works for
You & Your Family

Learning that your loved one has been diagnosed with cystic fibrosis (CF) can feel daunting. Not only is it life-changing for them, but for your whole family too. It might mean re-examining plans for today, tomorrow, and for your family’s future.

All the complicated feelings that come along with hearing that diagnosis are valid. But remember, you don’t necessarily need to change the hopes and dreams you have for your child or your family. With the right care, support, and thoughtful accommodations, things that might feel impossible now can be achieved—perhaps just differently, and with an open mind.

Turning everyday care 
into everyday opportunities

By now you’ve probably been given a lot of information about what treatment and daily care might look like for your child. And while it might change the way you parent them day-to-day, it doesn’t need to define them or your family. It’s simply one more layer to your overall dynamic.

Regardless of what your family structure looks like, it’s important to make sure everyone feels equally important and seen. This can be understandably tough, given the medical needs associated with raising a child with CF. Prop up each family member by:

Having one-on-one time

  • Plan date nights for you and your spouse, even if it’s just streaming a movie together in your living room after your little ones are in bed
  • Figure out ways to invite each of your children into special moments during your daily routine, like a yoga flow or some mindful time together while you drink your morning coffee

Helping them pursue their interests

  • Not all extracurricular activities are attainable or affordable for all children, but letting them know you support them and encouraging them in their passions can go a long way. Your social worker at your CF center may also know of some grants available to help your loved one with CF participate in certain programs

Checking in regularly

  • If possible, find a time everyone can be together to share their highs and lows of the day, celebrate wins, and clear the air

How about involving the whole family unit in daily activities surrounding care? This can help create new bonding experiences and give individuals a sense of action and purpose. For example:

Education about avoiding germs in and out of the household

  • Emphasize the benefits for maintaining overall health for every member of the family

Involvement in meals and preparation

  • Give individual family members the opportunity to choose a weekly dinner or afterschool snack

Shared responsibilities

  • Ask older siblings if they’d like to take part in medication organization, offer support during tune-ups appointments, or get involved in other aspects of care

Delegating caregiver roles

  • Find opportunities to split tasks with other adults in the family to lighten the load

Treat treatment time as family time

  • Letting siblings watch a show or play a video game together while your child with CF does their treatments in the same space may help them feel more included and gives everyone something fun to look forward to

It’s important not to feel overloaded with responsibility and to strike a healthy balance within your family dynamic. It’s also okay if that balance isn’t struck every day. Parenting is hard, and having a child or children with a chronic illness can make things harder. It’s all about trying your best and coming together as a team.

Finding support from 
extended and found family

Oftentimes, grandparents, aunts, uncles, or other adults in the family are willing and eager to help out where they can. And while not everyone is able to live near family, or simply aren’t close with them, don’t underestimate the power of the found family you build around you within your community.

There might be opportunities to help with school pickups, attending extracurriculars, even picking up groceries on days when things get hectic. You’d be surprised where help can come from when you’re open and honest with your loved ones about your needs.

There are going to be so many people that are around you during this journey and during this diagnosis, but they haven't been there. They don't know how to help. And so sometimes that just means like, we have to tell them…“Hey, this week is, you know, crazy. I need you to bring me dinner.” Like, I don't know how many times just dinner has been a blessing.

–Magen, mother of twins with CF

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