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The hidden struggles of caring for a child with life-limiting conditions
Caring for a child with a life-limiting condition presents immense challenges, particularly impacting the mental and physical health of parents and often mothers bear the bulk of this.
Research shows that mothers of children with life-limiting conditions face significantly higher rates of physical health issues and mental illness, compared to other mothers.
However, despite these challenges, these mothers demonstrate extraordinary strength and resilience every day.
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Reagan said: “When things took a turn at birth, it was at that point I knew my life would change forever. I am now known as a carer, not just a mother or cabin crew.”
Reagan Lewis is the mother of Alessi, who has a life-limiting condition (they have wished not to disclose her medical condition) and regularly visits charity Jessie May for support and much needed respite.
She shares her experience: “I am now Alessi’s professional advocate and medical mum, but I didn’t sign up for this.
“It takes a lot of mental strength to take on that role. You do it because you are their mother, and I would do anything for any of my children, but mentally taking on the responsibility of keeping her alive, every moment of every day, is overwhelming.
“She relies solely on me, and as a single medical mum, it adds an extra layer of strain and stress that I can’t easily share or offload.”
“However, I do find myself venting to my Jessie May nurses – by the time half the visit is over, I’ve spent most of it talking at them.
“The one thing I do struggle with is the lack of help from other services and companies. I rely heavily on the two Jessie May visits each month to get some time for myself, which is really important for my well-being.”
Reagan also shares the physical strain that comes with caring for a child with complex needs: “The physical effects of caring for Alessi are constant.
“She has extremely high muscle tone and is rigid, so I am always lifting, carrying, and supporting her to maintain a safe posture.”
Over time she says that the repetitive strain has led to scoliosis and a twisted spine, which now requires weekly chiropractor visits.
She adds “I’ve also had to adjust to sleeping on the sofa four nights a week due to the lack of space for Alessi’s specialist equipment, which adds to the physical toll.”
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Not only can caring for a child with a life-limiting condition affect parents mentally and physically, but it also impacts other areas of every-day life such as careers, Reagan who works as cabin crew has had to put hers on pause.
She says: “I feel like I would be able to return to my career with some reasonable adjustments, but currently, this is not looking doable. I think this contributes to not feeling like myself and losing ‘me’ a little bit. I will be gutted to have to resign.”
The lack of adequate support, Reagan says also put a strain on her relationships.
Reagan explains: “Having a child with complex and life-limiting needs like Alessi, it changed me as a person and contributed to our family breaking down.
“Then as the mother, I was expected to be the one to stay at home while dad continued working. Luckily, I have amazing friends and family who are mine and Alessi’s biggest cheerleaders, along with my Jessie May nurses.
“They remind me of what I do and how well I do it – and not all children are that lucky. They know when I need a little pick-me-up, fix my crown, and carry on.”
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As Mother’s Day draws closer Jessie May wished to highlight the importance of increasing support for the hospice sector.
They said: “It’s crucial that more support and recognition are given to mothers who care for children with life-limiting conditions.
“Supporting charities like Jessie May plays a key role in providing that help. This not only benefits the children but also supports the well-being of the entire family, allowing both the child and parent to receive the care they need.
“This Mother’s Day, we celebrate their dedication and the powerful role they play in their children’s lives. Their love, commitment, and selflessness highlight the incredible strength of mothers who rise above adversity with courage and grace.”
All photos: Jessie May
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