This week I have been trying to cross a few things off my very long ‘to-do’ list, and writing about the family weekend and conference we recently experienced has finally been given a few moments space.
Matt and I have different ideas about who had the thought that organising a second weekend would be a good idea! I’m sure he suggested it, but maybe I was dreaming. In any case, what I personally gained from the weekend, and what our family experienced has certainly confirmed that whoever’s idea it was, it was a great one.
It sure takes a lot of work to coordinate over 200 people, 41 families, for a weekend of education, recreation and celebration.
Friday afternoon saw the official start of our weekend, though we had already had many informal catch ups with other families since our arrival on Wednesday evening. After Dr Stephen Withers (geneticist) and Dr Honey Heussler (paediatrician) presented a session on Cri Du Chat basics and current research, we began formal registrations and our Welcome Event, including cape-making, faceprinting, balloon creations, sword fighting, equipment demonstrations, excessive amounts of sugar, and a few welcome speeches (tough crowd!). I can’t thank my volunteers enough for their support at this event, helping to ensure a relaxed and welcoming atmosphere for returning families and those meeting up for the first time.
Festivities continued into Friday evening with a Siblings Party in the Kids’ Club, and buffet dinner for VIPs (those with CDCS), parents, carers, family and friends who had attended to support our event. After the kids were put to bed (thanks Nanna and Grandad!), some late night shenanigans ‘testing out’ the giant ball pit for Saturdays VIP program ensued! On a genuinely serious note, the casual catch ups in the lobby lounge with friends old and new were what really added value to the weekend for me.
Saturday saw our guest speakers lead adult education sessions with a focus on preparations for the National Disability Insurance Scheme, and maintaining and promoting positive attitudes to disability. Impromptu presentations form two families already in NDIS trial sites were invaluable in helping to prepare us all for what is ahead.
Carers Queensland counsellors and Benevolent Society volunteers worked with our siblings to answer the question: “What makes me a superhero?”. We also kickstarted a Super Sibling Pen Pal Project in this program, and Callum has excitedly received 2 letters already since arriving home. It will be great for him to continue to build connections with other kids who ‘just get it’.
Conductive Education Queensland staff took control of the VIPs (and the ballpit!) for the morning. The photos taken during this time scream happiness and belonging.
Saturday afternoon, we headed off with our families to explore Sea World. Our family adopted the help of Mikyla (a 28 year old VIP from WA) who was keen to push Claire’s stroller, feed her her meals, and cuddle her profusely for most of the weekend. What a sweetheart Super Miky i!
Saturday night was time to party! A Superhero Soiree celebrating the achievements of our awesome VIPs and our families. AJ and Jane’s awesome photo booth stole the show, capturing pure delight! Jimmy tried to sneak a few kisses in with Claire Bear as per usual ;).
Sunday morning we shared breakfast, and I spent a little more time at Sea World with my boy. The AGM on Sunday afternoon was the biggest the group has ever had! So wonderful to have such great attendance and to grow our group with representation now from four states. Plans are in place for biennial family weekends, preferably moving around the country. On the alternate year, we will continue to support parent workshops, helping to educate our families with access to guest speakers relevant to our journeys. For Claire, the information Matt and I gathered at the 2014 parent workshop resulted in medical interventions that changed her life for the better. We also had opportunity for our first weekend away together since Claire’s arrival.
To everyone who helped to support our fundraising and awareness-raising efforts in preparation for this conference…. THANK YOU!! I hope the pictures shared are enough to show you what a difference every dollar and every good wish has made. We couldn’t do this without your continued support.
And a few more pictures or those #cdcshero smiles….
If you wish to commit to a regular donation to the Cri Du Chat Support Group of Australia, you can pop credit card details in at http://www.givenow.com.au/criduchatsupportgroup
Fundraising initiatives and corporate sponsorships are also invited.