Being a carer and mother is 'a tough journey'

A woman who has a daughter with a life-limiting condition said Mother's Day would be special, although becoming her carer was "a hard pill to swallow".

Reagan, 28, from Yate, near Bristol, gave birth to Alessi in September 2020 and following complications during delivery, her baby was brain-damaged and is unable to walk, talk, swallow, or even cry.

Alessi, now aged four, requires round-the-clock nursing, and Reagan, her sole carer, only receives six hours a month of respite care from the Jessie May charity.

"I know they wish they could do more, but I wish there was more support that I could lean on," she said.

Reagan said she was looking forward to the weekend.

"I've got a big family, so we're going to spend Mother's Day together with the people that support me all year-round and that's the people that mean the most to us," she said.

"My twin sister plays football for Bristol Rovers, so every Sunday we're normally down there supporting her.

"No doubt we'll be laughing and joking somewhere and ending the night on the sofa having snuggles, which is our favourite spot, and no better way to celebrate Mothers' Day," Reagan said.

Alessi has high muscle tone and is dystonic, so she can become rigid and stiff and has no head control.

As a result of lifting, carrying and supporting her daughter, Regan has developed scoliosis - a twisted spine.

Jessie May, which provides at-home respite care, recognises the huge impact being a full-time carer can have on parents.

"A mother's emotional and physical wellbeing is just as important as the care her child receives," said Daniel Cheesman, chief executive of Jessie May.

"That's why we're here - not just to support the children, but to ensure parents like Reagan receive the breaks, emotional support, and community they need to keep going."

"I became a mother when Alessi was born, but I also became a carer and after four-and-a -half-years, it's taken me that long to realise actually that it isn't the norm, said Reagan.

"It's my norm because I don't know any different and I'd do anything for her, so I take on all of these hats and roles, but when it gets to it, the burnout is real.

"I think sometimes I struggle to accept that I'm not the Reagan that I knew before," she said.

Reagan, who also has a two-year-old son, Lakelyn, said the challenges of looking after Alessi had caused the breakdown of her relationship with her former partner.

A study by Wiltshire-based charity Julia's House Children's Hospice found 64% of divorced or separated parents cited having a child with complex needs as a reason for the relationship's breakdown.

And 75% had no access to short respite breaks at that time.

"Jessie May are the only people who have been there from the minute Alessi was born," said Reagan.

"They've seen every lump in the road, every rock we've hit and every obstacle we've jumped over, so they feel like family, but they are a charity, so their help is limited.

"I wish there was even just a drop-in playgroup for disabled children to take the load off somewhere else.

"My family could be trained to help, but I think that is such a big responsibility and then it becomes a business, being trained to keep Alessi alive."

Reagan said she hoped in the future to be able to help other parents going through similar experiences.

"I'm quite a strong woman, but this is really a tough journey," she said.

"And I'm stubborn, so it's taken a lot for me to admit that actually hit a bit of a burnout.

"I've got to remind myself that if I want to be the best version of myself then I've got to remember to look after myself and then I can be the best mother to my children.

"I wish going forward that if anyone ever needed to speak to me or hear my journey, I would love to support them.

"Having children with really life-limiting conditions or disabilities can be a lonely place," she said.

Mr Cheesman said "no parent should feel alone in this journey", adding the charity was "committed to standing beside them".

Reagan added: "Alessi is thriving in her own little way, but we do have many struggles that we're still facing, and we'll carry on facing."