Peter and Frea Bolt have five children and seven grandchildren. They are retired and thoroughly enjoy being grandparents to their family. One of their grandchildren, Charlotte, has CF. She is four and has just started kindy this year.
In what way is being a grandparent different to being a parent?
We love spending time with our grandchildren and we take our role as grandparents seriously, but we enjoy the fact that we don’t have as much responsibility as we did for our children. We also recognise the importance of being role models and providing stability within the family.
Has having a grandchild with CF changed your grand parenting style?
No. First and foremost our grandchild is Charlotte. She’s witty, quick minded, determined, has a happy nature, is fun loving and active, and she has CF. CF doesn’t make her the character that she is.
Since being physically active is so vital for people with CF, we have been encouraged to be more physically active. Charlotte loves swimming, the trampoline and is just starting acrobatics.
Sometimes we go to the clinic visits with Charlotte’s parents as support and Charlotte loves to show us the “Starlight room”. It’s good for us to be involved and come along to PMH as it prepares us for if Charlotte has an admission and to learn more about the physio.
What was it like the first time you looked after your grandchild with CF?
The diagnosis came as one of the biggest shocks in our life. We hadn’t heard of CF before. It took a while for it to sink in. We went to PMH with Charlotte’s parents for the first consultation. We couldn’t tell by looking at Charlotte that she had CF and we hoped that the hospital was wrong, but it became clear that once she was on enzymes, her cheeks became more filled out and the medication was helping her.
Both of Charlotte’s parents have taught us how to do the physio and the enzymes, providing us with a laminated a sheet with photos and directions of the different physio positions.
So that our granddaughter can come over for sleepovers, we make sure we are up-to-date with her physio routine and treatments. We have practiced different physio routines on a big doll first as we wanted to be able to do it right. We find that the less fuss made about the treatment, the more normal it is and it is all part of the daily routine.
Do you have any advice for new grandparents who have a grandchild with CF?
Try not to look too far ahead and maintain a balance between being positive and realistic about things. Remember that a child who has CF has many aspects to his/her personality, and CF is just one part.
Try to understand CF, the physio and how to do it and understand the process of enzymes, so that it is not something that is frightening or daunting. Then if you understand enough about CF it makes things easier for the parent and the grandchild. Try to keep the CF treatment as a normal part of everyday life.
Is there anything else you would like to add?
We love all our grandchildren equally. Charlotte is one of seven grandchildren and we try not to make her feel different. It is not helpful to her if we were to make her feel special compared to the other grandchildren because she has CF. We love her for the person she is, she just happens to have CF, but she is just like all the other kids.
The diagnosis of CF was a huge shock for our family, it is for anybody, but it is what it is.
As grandparents we want to be the best support we can be for our children and our grandchildren.
We have experienced a see-saw of emotions through our granddaughter being diagnosed with CF, however we are very grateful for all the specialists at PMH and are also very encouraged by the current research that is happening. While we try not to look too far ahead, we are praying for a breakthrough that will help our granddaughter. In the meantime her parents are doing all they can to keep her as healthy as possible.
Article from RED Magazine, Winter 2012