Ah, the summer holidays.
While having time with my boy is fabulous, we tend to experience something of a space issue.
Come the school holidays we lose access to our front door as the hall is FILLED with equipment. Sam’s standing frame comes home so he can use it over the summer, and it is ENORMOUS.
His positional support chair is also home, and is also huge.
He may only be 8 but the wheel bases on these items alone are significant.
Equipment aside, we also have the regular deliveries… ladies and gentlemen, I give you the regular supplies of enteral feeding and continence products.
Long gone as the days when a months supply of nappies could fit in one drawer… now they fill the whole cupboard. A regular debate in the Voisey household is ‘which room shall we lose this time, dear?!”.
Obstacle courses have nothing on your average SN family home when Abbots or Hartmann have been.
And every single day I am grateful that we have this.
It means that our boy has the equipment he needs to keep his body strong and healthy; he’s unable to stand or walk, so his standing frame allows him to experience being upright and allowing his muscles and bones to weight-bear, keeping them strong and healthy.
His support chair keeps him comfortable and perfectly positioned to play with his beloved LEGO and to interact with us at his own level.
SN equipment funding is yet another example of a postcode lottery with many families having to fight and fundraise for essential pieces of kit, including suitable wheelchairs and standing frames.
While enteral feeding provides a different set of challenges, if you wish to try a blended diet for example (Sam thrives on a mixed diet which includes both blended food and formula), being provided with his feeding supplies is one thing less to worry about.
And while it may not be a huge amount, the NHS contribution towards his continence needs all goes a long way to helping us give him the best life possible.
Granted, we lose a room every month to a mountain of boxes and equipment… but knowing we have what our boys needs makes it absolutely worth it.