‘I had to learn everything again – eating, writing, typing, gripping objects, sitting up, standing and walking,’ says Ami Hook-Ireland, 25.
In 2018, Ami, from Fakenham, Norfolk, was diagnosed with sensory ataxia, a neurological condition that affects her balance, coordination, motor skills and walking.
Shortly after, she was diagnosed with transverse myelitis, a rare neurological condition where the spinal becomes inflamed.
The cervical and thoracic areas of her spinal cord were affected, showing extensive damage. The inflammation caused her to have no control in moving her head, her upper torso and all four limbs.
Now, Ami has a two-month old daughter, named Daisy. Her multiple conditions add an extra layer of difficulty to parenting – but Ami says having a child has been life-changing in the most wonderful way.
‘These two conditions combined have left me with limited mobility, I cannot walk independently,’ she tells Metro.co.uk.
‘Before my daughter was born, I was able to walk a couple of metres, at the most, with my walking frame and the support of one or two people, depending how strong my legs felt.
‘Both conditions have caused me to experience altered sensations around my body, mainly my hands, legs and feet. I have muscle weakness, fatigue and poor fine-motor skills too.’
Alongside these two conditions, Ami also has mitochondrial disease, a rare spectrum of disorders caused by mutations to the mitochondria, which live in our cells.
There is no cure for Ami’s conditions.
Physiotherapy helps the mum to regain some mobility and strengthen muscles, while medication manages the symptoms of mitochondrial disease.
Her husband, Ewan, helps to support Ami, but it hasn’t been plain sailing.
‘Ewan and I struggled to begin with, when my health started deteriorating four years ago,’ Ami tells us.
‘We’ve been together for nearly eight years; becoming disabled has been challenging to adapt to, but our love for one another is stronger than before.’
The arrival of Daisy, however, changed everything. Ami is keen to break apart the idea that someone shouldn’t be a parent simply because they are disabled.
It can be frustrating to know that she can’t do everything for her child, but Ami has learned that her daughter’s happiness is more important than what anyone else thinks.
‘Due to many aspects of my conditions, I can’t physically do much for Daisy; accepting that has been the hardest part,’ she explains.
‘We are still learning about different ways of how I could try and be more involved with the physical aspects, like changing a nappy, putting clothes on, bathing, etc. It’s a huge learning curve.
‘I can feed Daisy, and I can hold her as long as my arms are being supported by pillows.
‘My mum is an absolute diamond, she has helped me so much, caring for Daisy, even more so since Ewan finished his paternity leave and returned to work.
‘It’s not being easy but I strongly feel we have all settled into a routine that works for us.
‘To the outside world, it would seem that we have an odd set-up, but it works for us, we’re happy and that’s what matters.
‘Being disabled or chronically ill shouldn’t take away my right of being a mum.
‘I’m not perfect, nobody is. Just because I have to do things differently does not make me any less of a good parent.’
The mum is pondering how she will teach Daisy about her conditions, but knows she plans to answer any questions her child has.
She says: ‘If Daisy is anything like me, then she will take everything in her stride and that life is always changing.
‘Over time, I’m sure she will come to see that being disabled or chronically ill doesn’t mean it’s a bad thing or that life should just stop.
‘All it is, is that I need to do things differently – which does not make me any less of an equal as the next person.’
The year she was diagnosed with her illnesses, Ami almost lost her life to pneumonia.
On the morning of Sunday March 4, 2018, she began throwing up and felt immensely tired. By lunchtime she was asleep and unresponsive.
She remembers nothing from then on, waking up two days later in the intensive care unit, only to be placed in an induced coma to recover from an infection.
‘Petrified doesn’t even come close to how I felt,’ Ami recalls. ‘I was transferred to the second hospital, where they found out I had contracted bilateral pneumonia.
‘Throughout my time in ICU, I was heavily sedated, dependent on a ventilator, had a tracheostomy and spent many hours staring at the ceiling wondering if I was going to see the next day.’
As her vital signs dropped, Ami worried she would pass way without telling her husband, who was at home nearly 70 miles away from the hospital, that she loved him one last time.
Thankfully, a team of doctors, nurses and specialists saved her life.
Now, Ami has good days and bad days. Ewan and her mother alternate between caring for her. She is completely dependent on them to assist her with personal care, getting dressed and transferring. But they have a routine, which helps.
‘The future is unpredictable; therefore I take it one day at a time,’ says Ami.
The mum, who is unemployed, shares her story on a blog, Undercover Superhero, in part to combat the misconceptions she faces about chronic illness and disability.
She tells us: ‘I was mocked for not eating quick enough, and was told I should have a nose bag – this was said to me at the time when I was learning to handle cutlery again.
‘The same person also tried to convince me that I had motor neurone disease), purely because they hated the word “ataxia”. Ataxia is not a bad word.
‘By a different family member, I’ve been told that I have the luxury of being able to rest whenever I want. This couldn’t be further from the truth.
‘Disabled people do not have the luxury, it is not a choice. Its part of how we manage our conditions, if we don’t rest then it can have a profound effect on our bodies, and not in a good way either.
‘Alongside my conditions, I have hearing loss and a vision impairment. I once was told this – “You can see, you just think you can’t” – Toxic positivity and ableism at its finest.’
When asked what Ami wishes others knew about her conditions, she adds: ‘Ataxia is commonly perceived as though the person is drunk – unsteady gait, poor balance and even slurred speech.
‘Ataxia can present itself with a variety of symptoms; no two people experience the same symptoms despite having the same condition.
‘Transverse myelitis needs more awareness full stop. There is no representation of this condition in the media, which I hope changes in the near future.
‘My specialist told me that although mitochondrial disease is a progressive condition, people can still live a good life; because of the vast spectrum of mutations and variants, it can be difficult to provide a prognosis.
‘We just have to take it one day at a time.’
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source https://metro.co.uk/2021/01/12/mum-shuts-down-idea-you-cant-be-a-parent-when-youre-disabled-13890620/
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