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Most days begin the same; with what we ‘affectionately’ refer to as the dawn chorus; Max singing and droning. This would be a nice way to wake up if it wasn’t a) before 5am and b)
incredibly loud.
My name is Rachel Kaczmar and I work as the family’s co-ordinator at The Chronicle Sunshine Fund. I am also Mummy to 7-year-old Max and 20-month-old Mabel. Max has had complex medical needs since birth. There is no diagnosis for his constellation of issues that affect his brain, heart, kidneys, digestive and sensory systems. He also has epilepsy, autism, hearing and visual impairments, so Max requires some very
special care and equipment to help him live safely and comfortably.
Over 6 years ago The Chronicle Sunshine Fund were able to provide Max with a specialist bed that catered to his needs. Thanks to the charities support we had one less thing to worry about and we knew that our little boy could have a safe and sound night’s sleep, like every other little boy should. Max is mostly a jolly little soul, however recently on Mondays; he’s been sad. When we talked about it, I realised he’s getting the odd case of the Monday Blues (don’t we all?!). Cue some serious confusion and horror in his little face as he thought he was, or was about to turn, blue! It’s easy to forget that his brain processes things so literally and doesn’t grasp those commonplace turns of phrase. Now he’ll sometimes say, “Feel blue this morning” and I know he needs a little more TLC before starting the day.
Max likes to plan his day, it’s an essential part of his routine. It also helps us as parents to manage any potential stressors and help keep him emotionally regulated. At home and school we have a timetable with all the important events scheduled; 12:15 is crucial as it’s lunchtime! Max has only been able to chew and eat solid foods for the last six months or so and the happiness he shows eating an (unblended) tuna mayo sandwich reminds me to be grateful and appreciate simple joys in life.
Part of Max’s personality is that he has hyper-specific special interests and hobbies; and if left to his own devices, will spend all day focussed on these. Max’s current obsession is Teenage Mutant Ninja Turtles. He is, naturally, Leonardo, the leader. A truly method actor; he must be referred to as ‘Leo’ or he ignores us. For Christmas Max asked Santa to bring Mabel a Michaelangelo costume. Mabel does not share her brother’s love of TMNT. She
grudgingly wears her costume; and Max is then utterly delighted and runs around singing the theme tune, flapping his polystyrene swords in joy.
Afternoons at our house usually consist of snacks and a nap. Even though he is 7; life is exhausting for Max. He has to put so much mental and physical effort into everything that he’s often overwhelmed needs to sleep. Evenings currently revolve around cbeebies; and I’m not complaining as it means he’s still and calm! He and Mabel enjoy watching The Clangers, Moon and Me and In The Night Garden together before going upstairs
for a bath, story time and milk. Then it’s bedtime, in his safe and comfortable adapted bed, surrounded by his favourite soft toys; including, you guessed it, a plush Leonardo.
Rachel x