Jeanine’s journey with Kase
Tell us a bit about your family?
The Williams tribe comprises of my husband Kyle daughters Jakaia (17) Kyann (13) and our son Kase (10). We are a very busy family that juggles many activities but we wouldn’t have it any other way. Keeping Kase active is a constant goal no matter how exhausted we become.
How did you get involved with Cure Kids?
We are fortunate to have befriended another palmy Cure Kids family. It was from this friendship that we were lucky enough to have been asked to join the Cure Kids family. I am forever grateful for this friendship and opportunity.
We have only been a part of this CK family for about a year but it feels like more and thoroughly enjoy spending time with other amazing Cure Kids families etc. Being around people in a similar situation is like being in ‘therapy’. I am looking forward to many more adventures supporting this great organisation.
What has been the most challenging part of this journey?
‘The unknown’. Due to Kase’s late diagnosis we are still in the dark about the illness. We are still learning everyday about cystic fibrosis and working out how it is going to impact on Kase. It is difficult sometimes to determine whether his ‘cough’ is due to a bug or pollen or a typical cold. It’s really hard sometimes and the ‘unnecessary’ worry at times can take its toll. But it is what it is, no point dwelling on it.
How has it impacted your family and life?
We have done our best to ensure life goes on as normal. Fortunately we had raised Kase to be a very active young man so this was a blessing. Hospital visits (which are usually in two week blocks) generally cause disruption but we have managed to sort a routine out and my older daughter now drives and is old enough to stay overnight with Kase. This has definitely helped to ease the pressure. We organise Kase’s meds around him still going to school during these times which helps to keep normality. (Much to Kase’s displeasure).
Your family, and Kase are so brave, how do you stay strong through the toughest of times?
I’m not gonna lie, it’s hard, but you do what you gotta do to provide your unwell child with the best opportunity to have a healthy and happy life. My family are amazing. The girls have had to sacrifice ‘normal teenage’ activities at times especially when Kase is in hospital. My youngest daughter struggled at first, especially when I have to stay in hospital with Kase but I am lucky that her schools, staff etc were incredibly supportive. Kyle took the news about Kase pretty hard, but like me decided to accept this ‘curveball’ that had been thrown our way and tackle it head on. I have family living in Palmerston North and also some amazing friends and colleagues so we are well supported.
What is the most important thing for your family?
Family!! Staying positive and optimistic!
If you could have one wish, what would it be?
Cure for cystic fibrosis!
What is one piece of advice you would give to other parents / families going through a similar thing?
Take time for yourselves amongst all the chaos. Communicate during good times and bad times and don’t be afraid to say when it’s all getting too much. Don’t wait for the meltdown.