Steve and Sue have three children and eight grandchildren. One of their grandchildren, Paige, who is eight, has CF.
In what way is being a grandparent different to being a parent?
It’s brilliant, there’s always at least one grandchild over here at our house each weekend. Our oldest grandchild is twelve and the youngest is two. We love being with them and being able to spoil them (whereas you don’t do that so much when you’re the parent).
What was it like the first time you looked after your grandchild with CF?
Beth (our daughter) got a phone call from PMH to say there was a problem and we went to PMH with her when Paige was first diagnosed with CF. We were in a state of shock. Things have got easier as Paige gets older, especially once she could swallow her enzymes whole.
When we were at the first consultation, we were told there could be a chance Paige would need a lung transplant later on in life and our daughter said, “that’s alright, she can have my mum’s lungs”. My granddaughter has since asked if she can have my lungs too. I’m not sure what I’m supposed to do without them. We find a sense of humour works for us.
We’ve cared for Paige since she was a baby. I carry enzymes with me, and Steve has done the PEG (percutaneous endoscopic gastrostomy) feeds and the IV HiTH (hospital in the home) treatments for Paige. He’s also in charge of the nebuliser. The other grandchildren are all very used to the treatment that Paige needs, and Lily, who is four, asked the other day, “when I’m older, I’ll get a PEG wont I?”.
All our littlies are treated the same. Paige just gets a bit more attention and the others accept this because its always happened.
Were very supportive of Paige’s diet and we’ve all put on weight thanks to the cream cheese and cream etc.
Do you have any advice for new grandparents who have a grandchild with CF?
Our advice would be don’t panic and don’t try to take everything in at once. It’s not all doom and gloom and they have a life to lead; don’t let CF rule it, you rule CF.
Is there anything else you would like to add?
Paige is learning to surf and using a board which is taller than her, but she just takes it in her stride. She also went to cricket earlier in the year and last year she did dancing.
Last year she consistently got the highest grades throughout 2011 and she’d missed a couple of months schooling through being in PMH. This didn’t stop her from winning the Academic Award for her year. We are very proud of her.
Article from RED Magazine, Winter 2012