Ivy'v Story What care and support is available for those with deletion 22q11 syndrome?


Adam

Make a Donation

Find Max Appeal on Facebook

Join Max Appeal

A Parents Perspective - Three Peaks & Waddecar Camping

Written by Suzy, parent of Jack

Image: ss54334660_medium.jpgWhen Mark asked if I would do the 3 peaks challenge again I didn't hesitate to say yes, although this year I dragged my poor husband along. It's not just about raising funds or awareness for us, but a personal individual challenge.

Our children face challenges on a daily basis, from the moment Jack was born he's been prodded poked and undergone surgery that was life threatening, but always ...always put up with everything and comes through smiling at the other end, and all of you with 22q children know that every day the simplest of things for us can be the most difficult for them.

So the day came, 22/07/2017 and very very wet! But we started well and the great thing was, we were all there for the same reason, we all love somebody with 22q, we were all prepared to push ourselves 26 miles and 5500 feet, and that's what we did.

Image: suzy_and_steve_medium.jpgThe best thing is it's like being in a big family, there is always somebody waiting for you ...usually with a bottle of lucasade, a cup of tea a sandwich or just sometimes a cuddle a cheer and a round of applause. Those pit stops are like Jacks medicines they keep you going .

Yes ...there were times when we struggled, you get to the top and you can't find the trigg point for the mist, but you just carry on just like Jack... until the sun comes out, and it did ....the very last peak ...sun , heat...and finally dry clothes! And for the last 8 miles we definitely were just putting one foot in front of another ...but then that's what our children do daily, they have to so we did and at the end our extended family were all there to congratulate, clap, hug and have a drink with ........and yes we were still smiling at the end!


Waddecar Camping..

Image: jack_2_medium.jpgSo the weekend after the 3 peaks walk we arrive at Waddecar, Max appeal camp for us up North!!!
From canoeing, rock climbing, rifle shooting, archery, assault course, trips to Blackpool and not forgetting the camp fire and another year of Simon's Cecil getting even bigger .... the best weekend ever ..old friends new friends ...the more the merrier, and although Jack always says he's not going, has melt downs before and after every activity I know he enjoys it as much as us. For Jack these are all activities he would shy away from with friends his own age he would be worried about not being able to compete, be worried he wouldn't be as good as them so just wouldn't take part. It amazes me every year watching the children with each other, there's a unique understanding between the children that they are all the same, that they can be themselves and this also filters down through to the adults.


There's always plenty of food always lots of laughs and always somebody to have a chat with, but the very best thing about being with other 22q families is that nobody judges you or your child, never a disapproving look.

Camp is definitely great for the kids, it brings them out of their shells and for a short time they can be themselves ......but it's not all about the kids, at the end of the day when the parents sit round having a few drinks, they can also be themselves , compare notes ask questions share ideas , that only other 22q parents would understand !
Image: group83759736_medium.jpg