Caring for a child with a life-limiting condition presents immense challenges, particularly impacting the mental and physical health of mothers. 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. Their love and commitment highlights the incredible strength of women who rise above adversity with courage and grace.
Mothers show incredible determination and perseverance as they take on the dual role of both parent and full-time carer. Despite the overwhelming demands, they continue to navigate this journey with courage, though it’s important to recognise that their emotional and physical needs also deserve attention.
Jessie May understands firsthand the impact this can have on the entire family. This is why Jessie May supports the whole family, recognising that the well-being of the parent is just as important as the child’s care.
Reagan highlights the reality of the challenges faced by mothers like her, as she balances the responsibilities of caring for her daughter Alessi, who has a life-limiting condition. Reagan’s journey reflects the immense emotional, physical, and mental strain that comes with being a full-time carer. Despite this, she continues to give everything to her children.
How does having a child with a life-limiting condition affect you mentally as a mother, and what strategies do you use to cope with those challenges?
Being a mother to Alessi, who has a life-limiting condition, is mentally very hard. It has only been in the last few months that I have felt strong and brave enough to admit that to myself and to others around me. When you look at it, it’s a long time, as Alessi is nearly 4 and a half years old. To start with, I am a very strong, independent, and extremely stubborn woman who won’t be defeated by anyone or anything. I think, at first, I coped mentally by focusing on the here and now, putting the reality of it all to the back of my mind – some would say numb.
Mentally, it is draining for many reasons. To start, the sheer number of people and appointments we have to attend and have involved in our lives – sometimes it feels like a business and not my own child. I find this very hard because I feel like I am constantly arguing and advocating when I shouldn’t have to. The mental worry of getting poorly, the “what ifs,” and just not knowing when life can take a turn for the worse. With children like Alessi, the reality is that everything can change overnight. One day she can be well, and the next we are in the hospital, possibly in PICU. I try so hard not to look at it like that and live each day as it comes for this very reason.
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.
My main coping mechanism, if I’m honest, is keeping my humour. “If you don’t laugh, you’ll cry” is my motto. Some days, I definitely do both, but I remind myself that the days may be long, but the years are short. I have also learned, and only in the last few months, to ask for help or just talk. Burnout is real. If you can’t be your best self, then you can’t give your best to your children – and that’s something I remind myself of. So if I were to give any advice, which seems ironic since I don’t follow my own advice most of the time, it would be to be open, honest, and talk. You don’t have to take on the world on your own – there are others out there in similar situations, and you are not a burden.
Have you experienced any physical effects?
The physical effects of having a child with a complex and life-limiting condition start with constant manual handling. Alessi has extremely high tone and is very dystonic, so she becomes rigid and stiff with no head control. I am always lifting, carrying, and supporting her to maintain a safe posture, most of the time without realising. I have recently learned that from my repetitive handling and use of my stronger side, I have developed scoliosis and a twisted spine. Holding Alessi on the same arm/shoulder has massively contributed to this, and therefore I now have to attend a chiropractor three times a week. So it really does affect my own health. We don’t have a big enough house for Alessi’s specialist equipment and bed, so I currently sleep on the sofa four nights a week while I care for Alessi throughout the night. This, of course, impacts me physically.
How has your life changed both mentally and physically? Have there been shifts in your routines or emotions?
Life has changed massively for me. As much as I love being a mum and Alessi is honestly my world, I have never struggled before, either mentally or physically. But especially over the last couple of weeks and months, I have found myself burning out. The last four and a half years are having a massive effect. I feel like I’ve lost my identity as Reagan and have always had to wear so many hats that I don’t put myself first, even when I sometimes need to in order to be the best version of myself. I haven’t been able to return to work due to unexpectedly becoming my daughter’s carer. I now spend my days and weeks attending countless appointments and meetings. This makes it feel like we can’t just live a “normal” life – we are always having to be somewhere or check in with someone. I can’t just enjoy my time with Alessi and her brother Lakelyn. Emotionally, I have such bad mum guilt. Am I doing my best? Does her brother feel pushed out? Am I spending enough time with Alessi? I feel like I become overwhelmed easily now because of the mental load, trying to remember everything and everyone.
As parents, how have you navigated the tough times you face? What are your roles, and do you follow traditional expectations (e.g., does Dad continue working while you stay home)?
Having a child with complex and life-limiting needs, like Alessi, puts a massive strain on our relationship, changed me as a person, and contributed to our family breaking down. But even before this, yes, as a mother, I was expected to stay at home while Dad continued working. I feel like I’ve just winged my way through it, putting my all into being the best mum and just hoping it worked. Luckily, I have amazing friends and family who are mine and Alessi’s biggest cheerleaders. 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, haha.
I also find myself venting to my Jessie May nurses. Half the visit is gone, and I’ve spent most of it talking at them. But they are amazing and always make me feel heard, offering advice and support as much as they can. The one thing I do find hard is the lack of help from other companies/services. I rely heavily on the two Jessie May visits a month to get some time for myself, which is really important.
Do you feel that caring for Alessi has impacted your career? Do you work or have you taken time off to care for her?
Caring for Alessi has definitely impacted my career. Before having my daughter, I was cabin crew – a job I absolutely loved and couldn’t wait to return to (after enjoying my maternity, of course). However, 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.
I have been so fortunate with my company – they’ve supported me at all times, and I’m still on a “career break” with them. But this year is my last chance to return; otherwise, I will have to hold my hands up and resign. If I had more support for my child with a life-limiting condition, 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.
We want to thank Reagan for being so open and honest about her experience as both a mother and a carer. Her story has been incredibly eye-opening and inspiring. It’s vital that Reagan receives the support she needs, as her strength and resilience deserve to be met with the care and resources that can truly make a difference in her life. If you’d like to support Reagan and more families like hers, please find more information here – Support us | Jessie May.