You know that saying – ‘Never judge a person until you have walked a mile in their shoes’…? It struck me (Sarah – admin) the other day that not many people get to learn just how much goes into caring for a child who has additional support needs. It’s been a whirlwind of a term since our last post. Just watching from the wings has exhausted me, as Mae and her family juggle their lives! So here I’m going to share just some of the things, big and small, that have been happening since Summer….and they are just the bits that I know about!
The sky dive volunteers undertook another sponsored dive in aid of Mae. The whole family attended to show their support, which involved a 60 mile round trip, on the last Sunday of the school Summer holidays. Yes – the day where you and I, and thousands of other parents, do all the last-minute preparation of school uniform, labelling, washing and ironing The Team did a fantastic job and are still collecting sponsor money in to support Mae’s ongoing rehabilitation costs. Huge thanks go out to all involved xx
Mae’s constantly surprises us with her determination and in early September she gave Mum, Amy, an impromptu rendition of ‘Let it Go’ from Frozen, without realising she was standing throughout. These are the little things that make the effort all worth it!
Mae’s Mum and I regularly collect charity tubs which generous local businesses and companies have offered to house. We cover a wide area of Doncaster and have to account for every penny collected, to comply with the Charities Commission. That’s every penny, in every tub, collected, counted, banked in to Mae’s charity account and recorded in the accounts. Then Mae’s Mum personally thanks every person involved for their contribution, because every penny really does count towards Mae’s rehabilitation. Thanks to all who continue to support Mae’s fund through our charity tubs xx
Mae attended another 3-week session of intensive rehabilitation therapy at Footsteps this term. This involves either a 310 mile / 6 hour round trip per day (on a good day) or staying over in a bed and breakfast with Mae, and being away from the rest of the family. This time Amy chose to do a mixture of both, to break up the stay into manageable chunks and minimise travel hours for Mae. The boys and Dad stayed at home and friends, family and child-minders were enlisted to manage the school runs and clubs around Dad’s work. Even the best opportunities come with added considerations and complications for the family to accommodate.
Mum had to re-apply for a parking permit for the car. You would think that a renewal would be straightforward but, after completing a 10 page form, she still had to confirm Mae’s identity via a third-party, supply Mae’s birth certificate and get it all signed. Nothing is a quick job when you’re dealing with authorities!
Last week Mae had to attend for her check-up to assess her hip rotation and to decide if surgery is required to straighten her hip in its socket. This involved a trip to the nearest specialist unit in Sheffield, a wait for an x-ray and to see the Consultant and managing Mae’s distress that she couldn’t put her shoes back on! These things matter when you are five years old! The great news is that the SDR surgery hadn’t made any negative change to the position of Mae’s hip socket. The Consultant has agreed to review her and x-ray again in another 6 months. Mae’s hip is still a concern but the orthopaedic surgeon has told the family to continue with Mae’s therapy programme just as they are.
Mae continues to attend regular sessions of Physiotherapy, horse-riding and swimming to develop her trunk stability and strengthen her leg muscles. Week in and week out, regardless of the weather, her parents turn out to maintain Mae’s progress.
Other than that, family life goes on as in any other household – Beavers, Scouts, swimming for the boys, parties to attend, meals to make, just with more juggling of appointments, stricter record keeping to account for the charity money and more places to be on time.
Mae was recently lucky enough to be selected for a special trip to Euro Disney and the family have stopped for a well-earned break. We will shortly be updating us on how their trip went – photos to follow!
Breakfast with Pluto, Disneyland Paris
In the meantime, please spare a thought for anyone who has a child with additional support needs. The trials of their day may be more than you can imagine. Many thanks to all of you who continue to support Mae and her family, and who make Mae’s journey possible every step of the way.