Reagan, a devoted mother, faces the challenges of being the sole carer for her four-year-old daughter, Alessi, who requires round-the-clock nursing. Alessi was born in September 2020. Sadly, she incurred an irreversible brain injury by the time of delivery, rendering her unable to walk, talk, swallow, or cry. She has high muscle tone and dystonia. This causes her to go the other way, becoming tight and tense, with no control over her head. Reagan’s odyssey as a mother and caregiver is already unimaginably difficult. She has not stopped being amazing and being strong and somehow, day by day, surviving the challenges of having a special needs child.
Reagan’s family is limited to six hours a month of respite care. Instead, they’re counting on Jessie May, a charity focused on delivering at-home support tailored to families in greater need. Despite this scant support, Reagan is quick to recognize the important impact Jessie May has had on her life.
“Jessie May are the only people who have been there from the minute Alessi was born,” Reagan expressed.
As you can imagine, the burden of being a full-time carer has put a strain on Reagan’s personal life. Her relationship with her former partner fell apart under the overwhelming burden of Alessi’s care needs. A study conducted by Julia’s House Children’s Hospice revealed that 64% of divorced or separated parents cited having a child with complex needs as a contributing factor to their relationship breakdown.
Reagan cares for her two-year-old son, Lakelyn, managing the demands of motherhood and caregiving at the same time. She has not wavered in her commitment to her kids.
“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,” Reagan reflected.
The joy and liberation of Reagan’s resilience wears off the more roles rainbow Reagan can fit into her life. The emotional and physical effects of being a full-time carer took a real toll, and there were times I felt the sharp edge of burnout.
“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,” she admitted.
Jessie Mae takes all of that into account and understands how much of a burden being a full-time carer can be for parents. Daniel Cheesman, the charity’s chief executive, said it was crucial to ensure parents like Reagan were supported during this critical time.
“No parent should feel alone in this journey,” Mr Cheesman stated.
Reagan’s resilience, fortitude, and tenacity are readily apparent as she stops by the hospital to check on her daughter Alessi and surrogate Lakelyn. She recognizes that taking care of herself means she can be the best mother possible.
“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,” Reagan shared.
Reagan’s realities are daunting on a daily basis, but her optimism remains. She wants to see increased infrastructure around care for families raising children with disabilities.
“I wish there was even just a drop-in playgroup for disabled children to take the load off somewhere else,” Reagan expressed.
