“Shea is 3 years old. He has cerebral palsy and epilepsy, and has lost most of the right side of his brain due to a brain abscess that he got while fighting meningitis. He has large heart catheter which he had fitted in June this year and has also been diagnosed with autism.”
Sleep and routine
“I often wonder what a full night’s sleep is. Shea feeds through the night for 12 hours so I have to change his feeds every four hours, and that means changing and settling him again. His routine starts at 7pm, then he feeds again at 11pm and again at 3am. He often has frequent twitching seizures during the night too.
“Luckily my older son sleeps through all the milk alarms as he sleeps in his own room but the sleep deprivation is hard for me and my husband. We try to nap when we can, Shea still naps in the day, and he does go to nursery so I try and get my head down too but it’s not always possible, my brain just doesn’t want to switch off.
“I am one of the lucky ones though as my husband is always here to help, we take turns and its makes things easier. Shea’s specialist has offered us respite nurses at night to give us a break but until the council do an extension for a bedroom and wet room downstairs, Shea is in a travel cot next to my bed so it wouldn’t help at the moment.”
“It’s quite hard if you have family over or you are out and about and you have to disappear at 7pm.”
“I’m normally asleep not too long after Shea to try and cope with it.”
What helps Shea to sleep?
“Shea loves his blanket with a label. He strokes it to go to sleep. We stick to our night time routine which is 7pm he starts to feed, lights off and he lays with me cuddled up with his blanket to go to sleep.
He is in his own little world most of the time but he is, and always will be, our shining star. We will be there every step of the way with him.”
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Our Family Fund grants
You can apply for a Family Fund grant if you are the parent, or carer, of a disabled or seriously ill child or young person up to the age of 24.
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