Suzanne Gallihue with Taylor and Liam.

Include the non-CF Sibling

I asked my 5 year old daughter Taylor how she felt about her 2 ½-year-old brother, Liam, having CF. At first, she couldn’t come up with an answer. I gave her a day to think about it. When I asked again, she said she was happy he had CF.

Hmmm. That’s a strange response. She knows Liam was born with CF (she called it Liam’s disease back then), and she’s seen him very sick and in the hospital for weeks at a time. She’s also seen him get lots of medicines, chest PT and breathing treatments—you all know the drill. So, her answer concerned me. Why, I asked. “Because,” she answered. I thought that was an answer reserved for teenagers. After I pressed her, she explained that “his CF things are cool.”

Since Liam’s birth, we’ve involved Taylor in everything having to do with Liam’s CF.  She’s helped with his chest PT, emptied enzymes into his applesauce, hooked up his nebulizer, watched us change his feeding tube, visited him at the hospital, even tried on his vest. You name it, she’s done it. Whenever he watches a video during treatment, she watches, too.

We’ve also involved Taylor’s friends in CF. I’ve gone to her school with Liam and talked about CF, and demonstrated all his cool CF things. Instead of making Taylor feel left out, or jealous of Liam’s disease, we’ve involved her. I think that has made her feel special, and happy, too. 

Of course, my husband and I are very involved in Liam’s care. I take the mornings, he handles the nights. Spreading the care allows Taylor to see both of us involved—and not feeling resentful that one parent spends more time with Liam.  

It’s not perfect. This year I spent a lot of time on the Great Strides Walk, which Taylor resented a bit. So, I promised her I’d do something extra special with her after the walk. We believe that having individual time with the non-CF child is critical. 

 The other challenge we face is getting Liam to eat all sorts of fatty, salt-filled junk food while getting Taylor to avoid it. I had to have a long talk with Taylor about healthy foods for Liam vs. healthy foods for her. Now Taylor gets to pick one of Liam’s foods each day as her special snack. (If I could just get myself to follow the same rule!)

So, we recommend that you include siblings in as much CF routine as possible. Talk openly and honestly about CF, share responsibilities between the parents or other caregivers if possible, and spend quality time with the non-CF child, too. Remember, they are siblings, and like all siblings there will be rivalry. Don’t assume it has anything to do with CF. It’s just the way kids are! 

I hope our experience is helpful for you and your CF family. Feel free to email me at sgallihue@yahoo.com.