He is resilient, amazing and funny.
He loves people who love him.
He’s cheeky, loud, loves the water and a good bounce.
He gives good ”thinking face”.
He can melt you with a smile or a tap, or have you creased at his brucie grin.
He will splash you, roll on you, and snuggle in. He will do a snorty giggle that will have you joining in.
He loves a chat and a ”raaaaaah”.
He doesn't like to be ignored.
He shouts supporting his sister in all of her favourite activities.
He stills at the sound of rain on a window or his rain cover.
The wind in his face at the beach will make his eyes light up and a look of wonder fill his face.
He will spend an age exploring different textures and materials.
My son loves stories- particularly anything by Julia Donaldson.
He loves songs from shows and songs by The Prodigy.
These are the things that matter.
My son’s gastric transit can be sluggish or stop. He has a trans gastric jejunostomy button and uses feed or blended dairy and gluten free food.
My son is incontinent.
My son is a 32kg wheelchair user who needs hoisting.
He can be in terrible pain and can scream on and off for days.
My son needs BIPAP ventilation with oxygen through a nasal mask to expel CO2 and keep him breathing overnight. Sometimes this doesn't work and he needs more repositioning and/or more oxygen.
He has odd episodes where he stiffens and no air can again entry even with the ventilation. He needs to try his emergency vent settings then midazolam, and a nasopharyngeal airway if needed. These episodes are happening much more frequently.
My son’s equipment beeps throughout the night. We need to react, we can't ignore it.
He carries a bag and mask for resuscitation.
My son can stay awake for days, sweating and dehydrating as his dystonia goes off on one. ”Pure radge” we call it.
He needs careful considered monitoring. We may brush off concerns of those working with him at times, but we listen and we consider; valuing their concerns but weighing up options.
These shouldn't be the things that matter. But they seem to be what takes over. What meetings discuss. What plans hinge on.
With all of this he still isn't a priority at the only provision who can support him with his medical needs.
There is nowhere he can go for respite.
None-hospice respite providers will not have him due to his medical needs.
Respite foster carers cannot consider him due to his medical needs.
We have some overnight care. It helps both my husband and myself work. Our carers are fantastic. I play netball. He plays football. Our daughter does every flipping thing she can get involved in. I love my work. I love my family and Fred. I love my netball family. I also love sleep. It's fucking amazing.
But we need a break before we break
Why is there this gap in provision? Why is no one else allowed to, or able to do what we do every day and night? Our children and young adults have worth and value. As they live their medically complex lives we as a society will educate them, but not enable them to enjoy activities outside school other than those provided and organised by their families. As a society we can't provide a break for carers even though there is nothing available should the family break down, or die, or just not cope any more. How does this happen? How can families like ours fall into a gaping hole in service provision? Why aren't there more providers for medically complex children? This cohort of young people is ever growing. IT’S A GOOD THING that our children are living longer- we need to support them and the whole family.
Not sure where to go from here.
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