Life with profoundly disabled Nura is a beautiful challenge.
I am the mother of beautiful 5-year-old, Nura
, who is severely disabled or rather profoundly disabled (the term used by the medical fraternity). What still confuses me is the term ‘special needs’. Aren’t all children special, what makes my little girl more special? Well, apparently her lack of ability. She is not typical because she won’t go to school (perhaps a “special needs” school, which is also doubtful as the school facilities available are not equipped to deal with profoundly disabled children who can do absolutely nothing for themselves).
She is not typical in her behaviour, her growth or anything else that concerns her. But none of that matters when she smiles and laughs. You can’t help but laugh, as she is contagious, her spirit is from another dimension that we will never understand. She is in her own perfect world. What does profoundly disabled mean?
Nura experienced a profound hypoxic-ischaemic injury – which means she suffered a lack of oxygen to the brain. At age 5 she has the functioning capacity of a 3-month-old baby, if that. As she grows her brain does not (this condition is known as microencephaly), so her skull and face are smaller than a typical child’s.
She is unable to sit, walk, talk or do anything for herself.
Her sight is also affected by the fact that her brain is not able to process images and translate them into anything meaningful. We know she can see, but what she sees remains a mystery to us. We sometimes think she recognises things, but these could all just be grainy, blurry shades of light and dark that are familiar to her. She has compensated for her lack of sight by having an acute sense of hearing. She relies on her hearing to communicate and to orientate herself to her surroundings. She does make herself heard with definite intonation and attitude attached to the different sounds she makes.
She is also epileptic and on medication to control the seizures. She is a routine child and her body tells her when she needs to eat and sleep. She throws tantrums when you take too long to satisfy her needs and will let you know if she’s angry. One might mistakenly think she doesn’t know what’s going on around her, but we have learnt that she can sense tension and change. She responds to our voices and recognises me, her dad and her immediate family. Day-to-day life
Nura’s everyday routine consists of eating, exercising, various therapy sessions and sleeping. Just breathing in itself is an effort for her. If her nose is blocked she thinks she’s choking. Have you ever considered how much effort and coordination goes into sucking, swallowing and breathing all at the same time? For a child like Nura these are exhausting tasks in themselves.
I have to pack all food, bottles (yes she is still on a bottle as we have been trying to wean her onto a sippy cup for the last 2 years) and snacks that are Nura-friendly. She eats soft veggies, minced meat and chicken (all minced again in a baby blender once cooked). Her digestive system is immature and can only handle small amounts. She still has to be winded and burped.
She attends weekly physiotherapy and hydrotherapy sessions, fortnightly visual therapy sessions with a behavioural optometrist, quarterly sessions with an occupational therapist and a speech therapist and she is participating in a drug trial to test the effects a specific sleeping tablet has on people with brain injuries (which is what she has – an injured brain).
Looking after a child who is as profoundly disabled as Nura is exhausting and can be emotionally draining, but the rewards of seeing her smile and hearing her laugh are all worth the effort to make her life as comfortable as possible.