Parent Carer Collective: Samantha Humphreys

After years of thinking to herself, ‘I can’t do this every day’, this mother of three now relishes the purpose and new career prospects found in her parent-carer role.

Samantha Humphreys was forced to quit her career once the needs of her daughters – six-year-old Evie, who is autistic, and Molly, who’s five and has a rare genetic condition called Cornelia de Lange syndrome (CdLS) – took centre stage.

Molly, in particular, has kept her mother busy with tube-feeding and a rigorous schedule of therapies. It’s only recently that Samantha and her husband, Martin, have moved back into the same bedroom, after years of dividing and conquering to care for their three kids, including Logan, Samantha’s 10-year-old son from a previous relationship.

While their days are still challenging, this active family from Suffolk, England, have found their flow. Samantha has also discovered purpose in advocating for her girls and supporting other disability families through social media.

She’s currently listening to a mix of Taylor Swift and Ed Sheeran while doing her housework and, in some newfound downtime, bingeing Grey’s Anatomy with Martin.

Medically-complex parenthood has made its mark on Samantha – and not just in her choice of television viewing. The former property manager plans to return to university and train as a paediatric nurse.

Here, Samantha reflects on how her family navigates the ever-evolving challenges of parent-carer life.

When we are expecting a child, we usually expect to be their parent, not their ‘carer’. Do you identify as a ‘carer’ to Molly?

Yes, I explain to people that I am a parent carer, especially because I had to give up my job when Molly was born. Sadly, when people hear you don’t work, they often ask the question, ‘But what do you do?' As a carer to a child with disabilities, we likely do more than we ever did in our actual paid job.

It wasn’t until Molly was fully tube-fed, at four months old, and we had to make big changes in our household to accommodate this – like me moving into another room with Molly so we could set up alarms and a tube-feeding supply station and manage her night care – that I realised I’d taken on a full-time role of caring and was no longer just a parent.

I also had to quickly learn to be a nurse, physiotherapist, occupational therapist, speech and language therapist and psychologist alongside parenting.

What were your biggest struggles in the early months and years of parenting Molly, and what helped you during this time?

More often than not, I thought ‘I can’t do this every day’, especially when Molly was screaming in pain and vomiting, over and over. Evie was only 22 months older and, being autistic, had her own delays. So it felt very much like trying to manage a continuous fire at home. I was running between them and trying to dampen flames, but the moment I left each one, it would take light again. I wondered how I hadn’t completely broken down and how I was still going.

Parental instinct helped a lot during this time. I knew, in reality, that I was never going to just walk away from it all, that I had no choice but to manage. We reviewed our home environment – like changing our downstairs to wooden flooring that could be cleaned easily, setting up stations with clean muslins and clothes, and Martin and I taking a child each into two different rooms for night care.

I also trained my mum to tube-feed Molly so we had an external person to step in when needed and offer support. I stopped trying to do all the normal baby groups and just focused on our home and keeping the girls happy and safe as possible. We invested in our garden and toys that were good for their sensory needs and development, and we invited people to ours to play rather than attempt days out on my own. Small changes like this helped lead us through the fire.

How did you start forming connections with other parents raising kids with disabilities, and what changed for you once you made these connections?

When it was clear that Molly wouldn’t be leaving the hospital without her feeding tube, I joined the tube-feeding UK support group on Facebook and this really helped me connect with other parents. I made a group of friends with children that were around the same age as Molly, all with different reasons for their tubes, and we connected and supported each other and still follow each other five years on.

In terms of Molly’s syndrome, I got involved with the foundation for CdLS and shared our ‘inchstone’ progress on social media with hashtags and connected to others around the world. Molly’s gene change within her syndrome is very rare – every individual with CdLS is unique, each with their own strengths and challenges – and so it was important to show that everyone was different and give hope to those who were newly diagnosed.

Sharing content also gave me a purpose when I had to give up my much-loved job – and made me feel like I was doing something good.

Nowadays, what does caring for Molly tend to look like?

We have more of a stable overview on her physical health and although she still experiences vomiting episodes, it’s no longer multiple times a day like it used to be. Molly’s main challenges now are more around mental health and managing anxieties and her transition into school. Molly has good cognitive ability but freezes as soon as she’s in her school environment. She has selective mutism [when a child can’t speak in certain social settings] and needs a lot of adult support at school.

However, when Molly is home, we have a lot of challenging behaviour. She also has no concept of danger – which gives me multiple mini-heart attacks.

A lot of our job is being detectives and finding new ways to make her feel more comfortable outside the house, then slowly taking steps back. I’ve been going to her school twice a day to settle her in the morning and then eat lunch with her to make sure she does. We are hoping over the next few months that this will slowly be reduced until she is fully comfortable.

Can you compare your initial thoughts and feelings around parenting and caring for a child with disability to how you feel now?

Now that we are years into this life we have found our flow. Every day is still hard, but we have more answers to our questions. We also have the experience of knowing a lot of challenges come and go – and what you are finding hard currently won’t be forever. We are more confident in advocating for our children and what they need. Things are different for our family, but we are happy and accepting.

Especially with our autistic daughter, Evie, we’ve seen that challenges change and adapt. When we look back, things we thought would never get better have, in fact, improved. We’ve learned that we need to take life one step at a time – and not panic about not having it all worked out when they are little.

What do you find most challenging about being a parent carer? And on the flipside, what brings you the most joy?

Things don’t always look how you imagined they would when you thought about having a family – and other people won’t always understand. The flipside is you’ve been through so much that you appreciate more of the little things and are more grateful. It forces you to slow down and take in the little details.

Humour can make tough situations and topics easier to navigate. What funny moments have you had while caring for Molly?

I remember bursting into laughter when my husband complimented me on my ability to catch a vomit with zero mess. I thought, ‘These are my skills now, this needs to go on my CV’. Molly herself is hilarious and sassy and we often laugh to ourselves and say, “Where did we get you from?” Because of her social anxiety, her true personality and behaviour is often reserved just for us and so no one ever believes us when we tell them the trouble she gets up to!

'Self-care' is a bit of a dirty word in the parent-carer space, as we’re often told to do it and rarely have the opportunity. If you do manage to get an hour or so to yourself, just for you (not chores!), what do you do?

You are right, I HATE when people tell me to make sure I do more self-care because, for the first five years of this journey, even the thought of being able to would make me hysterically laugh.

Nowadays, I love to do DIY projects and organise and shuffle around our rooms. I’ve noticed a pattern where, post-hospital admissions, I’ll often paint a wall or upcycling some furniture. It’s my way of dealing with what’s happened and feeling accomplished. A completed project can boost me all week if I can find the time to do it!

Many parent carers need to step out of their careers to meet their child's needs, as you did. How did it feel to let this go, and in what ways does your advocacy now fill this gap?

It was really hard to leave my job as a property manager – and it’s amazing how quickly you lose respect when you aren’t working, even if what you are doing is actually harder. You often find yourself left out of casual conversations because work is always a topic, or you lose your circle of friends because you used to see them daily at work and now you aren’t there. I really loved my job and I love to keep busy, so having to leave it took a long time to process and come to terms with.

Advocacy saved me and gave me a sense of purpose back in the ‘adult world’. I cherish the messages from other parents who tell me how something I’ve said or mentioned has changed things for their child and themselves. And now, five years into our journey, I’m moving forward in finding a new career focus – hopefully going back to university to study to be a children’s nurse.

What supports have you put around yourself – or do you hope to put around yourself – so you can be your best version of yourself for the kids?

It took a few years, but I eventually recognised the trauma I’d been through and hadn’t really addressed. I sought help for my anxiety in the form of therapy and CBT [cognitive behaviour therapy] and I took medication to help with this. This year, I set myself some birthday goals that I would try and socialise more, apply to university and try to be healthier.

I’ve also realised that I most likely have ADHD, and a lot of the things I’ve struggled with in life are because I wasn’t educated in this and the best ways and methods to help me. So I’ve put things in place – like visual whiteboards of reminders and timers on my phone to get things done – and can now recognise when I’m overwhelmed and need a break.

How has your relationship with Martin changed since you became parents? And how do you two juggle your carer/parent roles between the kids?

When I met Martin, Logan, my son, was just under two years old and never slept – so he was thrown into parenting very quickly! We had a very fairytale romance and were married, house bought and pregnant within 18 months. Everything felt perfect and then, within the first year of our marriage, we miscarried due to a genetic condition that was not compatible with life. We also had a toddler who we thought was autistic, but no one was listening to or supporting us.

Then we were pregnant again, and Molly was born with CdLS and feeding difficulties. Our family was split apart as we navigated hospital stays and night care for the two girls. We had to do a lot of repair on our relationship while coming to terms with the reality that our lives would look different for some time, but this needed to happen in order for us to care for our children.

It’s only in the last six months that Martin and I have moved back into the same room, but we’ve learned that you don’t need to worry what other people think of what you are doing in order to help YOUR family.

Disability parenting is incredibly hard to navigate and not every relationship survives. Ours certainly needed a lot of support in the early days until we found more of our rhythm and we had more things worked out for the girls.

Is there anything you’d like to share about Molly, Evie and Logan's relationship with each other as siblings?

Logan is amazing. They call the sibling of a child with a disability the ‘glass child’ because they often take on a caregiver role and are conditioned ‘not to have their own problems’, but I haven’t found this to be true at all. That said, he’s certainly been patient with his siblings and is my right-hand man for help in fetching things, holding things, grabbing one of their hands and understanding that the girls are different.

Now that the girls are a bit older, Logan enjoys more of a traditional sibling role – playing Roblox with Evie on their iPads or on the swing set with Molly. The girls adore him and love any time he will spend with them now that he’s older.

I used to worry a lot about what Evie and Molly’s relationship would look like. Evie was in her own world for a long time and then she was terrified of Molly’s sickness, along with Logan, and often scared to be near her. Now they are six and five, they fight a lot like sisters but are also starting to play more games together.

Looking to the future, what are your hopes and dreams around how Molly is cared for and your role in her care?

I hope that Molly always feels safe and secure and if that means living with us as parent carers forever, we are fully embracing of it. Molly’s genetic change in her syndrome isn’t heavily researched, so I don’t know what her level of independence might look like in the future. I hope that one day she might have someone she loves and a family, because she loves role playing with her babies. But I’m quite happy as long as she is happy and doing things she loves.

Martin and I are very lucky, both being from big families, and I know she will always have family looking out for her. I will keep advocating for her as long as I need to, especially with her selective mutism – and that might be forever.

What do you wish other people knew about life as a parent carer?

I wish that people knew we are always thinking five steps ahead – that as soon as we solve one challenge, we are thinking of the next. That the fear of something terrible happening is a very real daily fear and that we are always questioning our decisions and wondering if we could be doing more. Those feelings and thoughts are heavy and time-consuming, so sometimes, it might feel like we aren’t very present.

We love when you ask about our child because a lot of our life revolves around them and we want to share without boring you. I love when friends consider our child’s needs when inviting us to something, letting us know if there will be a quiet space or if it’s a contained location, or how the event will go so we can prepare our child.

Also, keep including us and inviting us, even if we can’t come. We appreciate being remembered and thought about.

What books/podcasts/TV shows/films/resources have you found relatable, inspiring and/or helpful as a parent carer?

We loved the BBC program The A Word that followed parents navigating life with an autistic child. It really covered how this can affect a whole family, the challenges you might come up against, and how you change and grow as a family.

A fellow CdLS parent wrote The Little Book Of Broccoli: Doodles About Life Around A Rare Genetic Condition that sums up SEN life and is lovely to flick through and find relatable.

There are a lot of social media pages of fellow SEN parents that share relatable reels and thoughts out loud. It’s helpful to know we are not alone on this journey.

What advice do you have for parents who are new to caring for a child with disability?

A diagnosis changes everything and also nothing, all at the same time. They are still your child that you love, things might just look a little different to how you imagined. Surround yourself with other SEN [special educational needs] parents that can support you and advise you, so that you aren’t navigating this alone.

If you’re in a marriage or partnership, remember to talk to each other. Say out loud your fears or what you’re struggling with. Even if there isn’t an instant solution, it’s better if you’re both on the same page.

Follow Samantha’s story on her Instagram account.

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