The CF Sibling Relationship
Right now my kids are outside playing together in the sprinkler. I hear them laughing and having a great time out there. They are two years apart and, while they do fight daily, they have a close sibling relationship.
Our child with CF is 11 and is the oldest. Since he is older than his sister, she has gotten a crash course in cystic fibrosis from day 1. There have been many times that CF has taken a lead in our home, leaving our daughter out. It has taken a lot of trial and error to make sure that while our son is taken care of medically, his sister is involved every step of the way so that they are able to depend on each other.
How we build sibling support into CF care
We involve her
We involve our daughter in everything from administering treatments to clinic visits. By doing this, I hope that this normalizes this for her and makes it less scary. There once was a time where the airway clearance vest scared her, so we let her wear it and see that it doesn't hurt.
I know that it is really helpful for my son to have his entire family by his side. The more support, the better, especially in times of need. You can never have too many people holding your hand.
We ask questions
Not only do we talk about CF to our son, but we ask our daughter questions as well. We ask her how SHE feels about things, about hospital visits, about watching her brother do treatments. We talk to her about new medications he might have to take and new treatment schedules. We talk to her about any concerns she might have about what is going on. By making sure she is ok. Answering her questions allows her to be brave for her brother.
We talk about CF openly
We have always been an open book about CF in our home. It is not something we keep to ourselves, nor is it something that we don't talk about to others. It is not a family secret. We talk about it as freely as possible in order to raise awareness of the disease.
The same goes for talking about the good and bad of CF with our daughter. I don't sugar-coat too much with her about CF. I put things in terms that she understands but I am pretty honest with her.
We give credit
Whenever our son has a good clinic visit, it is a family celebration. I give our daughter credit for helping out and let her know that, because of her support, her brother is going well. It takes our entire family to keep him in the best possible health that he can be in and we give credit where credit is due.
She is there to make him laugh and get through tough moments. She reminds him to take his enzymes. She makes him go outside and be active with her. She keeps him in good spirits, and this is apparent in his attitude about everything. His family support (sibling included) pushes him through the things he doesn't want to do with his CF. I make sure she knows this.
We spend our time with each child
When you are a parent of a CF child, so much of your time is spent focused on and supporting that child that their sibling might feel pushed aside. We try to be as conscious as we can about this and spend as much as we can with them doing other things.
We try to spend time with just our daughter when we can to let her know that while it might appear that our minds are always on her brother, our minds are just as much on her. I would never want there to be any resentment between them because of missed time with their parents while being a kid. Even if it's just a run to the grocery store alone with her or letting her tag along when I need to run an errand, I put effort into letting her know she means just as much to me.
Supporting both of our children
Having a child without CF can be a challenge when you are trying to fill the CF caregiver role. You feel pulled in two different directions and it can be a mental strain. I would never want my daughter to feel that from me or her father. I want her to be as comfortable as she can be with CF life. Who knows, she could be his caregiver one day.
Have you needed to build a support system between one sibling with CF and one without?
Have you (or a loved one) been experiencing any negative side effects from Trikafta?