For those of you that joined us for the parent seminar this year, a massive thank you for a) trusting the team with your children for a week long camp and b) for making the huge effort to get yourselves there. As a parent myself I know what a mission this is to organise, especially if there are other siblings in the house (and/or pets) and juggling work schedules.
For those who missed out this year, make sure to prioritise it for next year. It certainly was an enlightening 2 days. This year we had a full compliment of 36 adults who flew in from all over the country, with a few that came from Wellington, so, although they didn’t stay “on campus” with us, they were there for the great line-up of speakers that educated us for 2 days.
Day one started with the very knowledgeable Prof. Andrew Day (no stranger to a lot of us who live in Canterbury and everywhere south of it) who demystified Crohn's and colitis with a general overview of the why, what they are, differences/similarities between the two diseases, how we treat them, as well as new developments in research and on the medications. Following Andrew we had an excellent presentation from registered dietitian Sarah Elliott from FoodSavvy.co.nz. FoodSavvy offers a nationwide service of specialist dieticians who work with digestive health, food intolerances, weight concerns and eating disorders as well as a wide range of conditions. Her talk was very current and informative. She discussed microbiomes and the gut/brain connection, the low FODMAPs diet, beneficial foods for IBD and IBS, and those foods that aren’t doing our kids any good. For most of us I’d say food and mealtimes are our biggest challenge, so this was extremely relevant.
Unfortunately a speaker who was due to talk on adolescence, cancelled last minute but the time was easily filled with lots of 'good value' questions and answers from which we all learnt.
After dinner together, with our kids, we had a brief talk by the incredibly kind and dedicated Dr Richard Stein from CCNZ about Camp Purple, how it all began, its growth, where it is now, and what it takes to keep it running and growing. Anna Scanlan, co-ordinator for the Crohn's and colitis support group in Wellington and a Co-opted board member for CCNZ, also came along to share her knowledge about support groups. We then had a quick visit from Kallia Patching, president of Auckland Ostomy Society, who was one of the crazy team “OKK" who cycled from the top to the bottom of NZ to raise money for Camp Purple. They funded for seven ostomates to come to camp. She was super inspiring!
As the parent co-ordinator this year, I was asked to initiate an ice-breaker so, other than doing the regular seminar ‘games', I thought back to what had made the biggest impact on me at all the previous Camps I'd attended. So I suggested we do the same - introduce ourselves one by one (no obligation if not comfortable talking in public or sharing stories), what age your child is, which disease he/she has, how long since diagnosis and generally how it is going on your journey. I started the ball rolling with my family's story and didn’t have high expectations, but two hours later, we'd heard from everyone and don’t think there were many dry eyes in the room. Thanks to all for opening yourselves up and willingly sharing your pain, fears, trials and tribulations with all of us. The stories were sincerely heartfelt and I think we all learnt a lot and benefited from one another's experiences. It’s a tough road on this IBD journey which often feels very lonely and isolating, but knowing that there’s a group of amazing parents out there who are experiencing stuff exactly like you is very comforting. Well done all. After a bit of socialising we headed to our cabins to sleep.
Day 2 was a full schedule of speakers which kicked off straight after breakfast! Kate Montgomery (a Crohnie herself and Camp Purple volunteer extraordinaire) started our day with helpful breathing techniques to get through the tough times, help with sleep or manage pain (not just for yourself but for our kids too), followed by beautiful words from Lisa Griffiths, an IBD nurse based in Welington. Almost made me want to move up north. IBD nurses are in short supply but high demand in NZ so hearing from her made us all realise how much we need to clone her. Not fair Wellington!
After Lisa we had a fascinating explanation of surgical options and techniques from Prof Mark Stringer, Paediatric Surgeon in Wellington. What a beautiful man and so passionate about what he does. Gave us hope that surgery can certainly be a game changer for some, but also hope that with all the advancements of new ‘wonder' drugs coming onto the market, his work as a surgeon will become less and less going forward. Hope is good!
Adrian Douglas from Freemasons NZ (one of Camp Purple's major supporters) gave us a fabulous explanation of what and who the Freemasons are and their role in our society. He demystified a few myths for us about the “secret men’s club” and also outlined the importance of donating to charities like ours. Their donations to Camp Purple are extremely generous and we are forever grateful that they’ve chosen to support us!
After morning tea Rachel Booker, a Clinical Psychologist based in Wellington concluded with a fascinating insight into brain development and psychology of children. She focussed on children living with chronic chronic illness. She gave us solid invaluable information and great tips for dealing with behaviour challenges with which we all struggle with to varying degrees. I particularly loved her comment regarding “bribing" our kids with a reward of sorts if they won’t eat (for example). She says “Incentives to do something pleasant is not a bribe. It is life.“ Made me feel so much better anyway!!!!
Unfortunately, had to sneak out before Rachel finished to catch a plane. This was a huge pity as I felt like she was directly addressing me (or maybe I had “HELP ME” written on my forehead) so I didn’t get to hear the end or say a goodbye to all the beautiful parents. I hope you all got as much out of it as I did though. And thanks to Professor Andrew Day and the rest of the committee who tirelessly worked on the speaker schedule. It was fabulous.
To all you beautiful parents out there, stay strong, stay positive, and, if you’re feeling alone and just need help or to talk, there’s a few support groups of other gorgeous people out there, you just need to reach out! Thanks Camp Purple for making this yearly event happen which makes such a difference in our lives.