Cystic Fibrosis News Today Forums Forums Support Groups Parents​ ​and​ ​Caregivers​ Community Member Feature: Jennifer and Claire

  • Community Member Feature: Jennifer and Claire

    Posted by jenny-livingston on September 11, 2020 at 11:05 am

    Jennifer, mother to Claire who has cystic fibrosis, shares some of her thoughts about parenting a toddler with CF during a pandemic. 


    I sometimes wonder what it will be like to explain to my kids when they are older that we lived through 68 days in the NICU and a pandemic all before our daughter was 2 years old.

    To be honest, I think I join a lot of people when I thought 2020 would be our year.  We had big travel plans and smaller plans like going to a restaurant for the first time that would mark milestones for our daughter.

    Instead, we are extending the post NICU and cold and flu isolation inevitably it seems.  The biggest challenge for me has been figuring out how to keep our daughter safe while experiencing the life she deserves.  I want our daughter to grow up not feeling like her CF limits her but truthfully it has been hard to not feeling it limit her in a lot of ways right now with COVID.

    She’s an almost two year old.  My son was playing at parks, going to music class and gymnastics and having play dates at this age.  She’s done none of this and it makes me angry and sad.

    Lately, I have been trying to shift my thinking to what we can do versus what we can’t do as a family safely during COVID.  We are very fortunate that we live close to the beach so it has become our second home during COVID.  A bonus is she gets all that salt air!

    In addition, I am moving outside my comfort zone a little to try and give her experiences during this time by doing more research and planning.  We were able to visit a zoo recently after I made contact with a staff member and explained our situation.  I also am working on enrolling her in a swim class with safety precautions.

    It is a hard time right now for everyone but especially those in the CF community.  CF parents right now are struggling not only with school decisions but there children with CF missing life experiences on an even greater scale than what is normal for the CF community.

    I really want to look back on these days of isolation as a time we adapted and overcame these challenges as a family while living our life to the fullest extent we can.  It’s not that easy but if anyone can do this, its the CF community.

    Jen can be found on Instagram or on her website: In the next week or two, I’ll be sharing more from parents in the CF community, so keep your eyes out for those posts! 

    jenny-livingston replied 3 years, 7 months ago 0 Member · 0 Replies
  • 0 Replies

Sorry, there were no replies found.

Log in to reply.