Parent Carer Collective: Keelan Burns

Keelan Burns lost his beloved wife while coming to grips with their baby Lorcan’s complex needs, but recent years have seen Keelan and Lorcan’s story take a happier turn. Here, Keelan paints a picture of the pain, joy and privilege of his parenting journey.

In his first weeks of life, Lorcan Burns’s parents, Keelan and Laura, would learn that their baby boy had suffered a hypoxic brain injury, leading to a diagnosis of quadriplegic, dyskinetic cerebral palsy. Just before Lorcan turned two, his mother Laura suddenly became severely unwell and passed away.

Heartbreaking doesn’t begin to describe what this young family faced and, as Keelan says, his son was his biggest saving grace. Being Lorcan’s dad helped Keelan through his grief and, as fate would have it, a loving blended household was waiting in their future.

Keelan and Lorcan now share their life in Antrim, Northern Ireland, with Keelan’s fiancée Erin and her daughters Lois, 13, Sophia, 12, and baby Imogen, who Keelan and Erin welcomed just three months before this interview took place.

Lorcan, now six, is enjoying the gorgeous views from a home that Keelan designed and built to meet his needs, both now and as he grows. When Keelan’s not parenting his brood of four, he works for the NHS in the coordination hub of Antrim’s local hospital. Keelan also shares generously on social media, taking the world along on their journey.

Read on to find out more about the father behind @my_son_me_and_parenting_cp and his family’s incredible story.

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

I’ve always seen myself as a father first. I am a daddy that does many caring roles but I don’t see myself as a carer because, regardless of what needs Lorcan had, I was always going to be his father and would have done whatever it takes, come what may.

Tragically, Lorcan’s beautiful mum unexpectedly passed. If you’re comfortable to do so, can you please share some of how you felt as a newly solo parent?

Yes, unfortunately my wife Laura passed away very suddenly and unexpectedly at the age of 32 in December 2018. It was nine days shy of Lorcan’s second birthday. As you can imagine, it was such a difficult period. Given the suddenness of Laura’s passing – and the emotions and grief that come with loss, whilst trying to adapt to life as a single parent at 29 years old – it was hard. Lorcan had medical complexities and we still had hospital stays, had to attend appointments and keep up with his therapy regime. It was a tough period in our lives.

I was grateful that from the time Lorcan was born I had always been very hands-on with him. When we got his diagnosis I reduced my work hours, as I wanted to be involved as much as I could in his appointments and therapies. I also wanted to educate myself as much as possible on his condition so that I could care for him the best I could. So when my wife passed, I wasn’t completely out of my depth, but it was still very difficult.

What helped you get through the early weeks and months after losing Laura?

Lots of coffee and music. There were a lot of sleepless and lonely nights so the coffee kept me going and the music took the loneliness away. But Lorcan was my biggest saving grace and my light at the end of the tunnel when my wife passed away. He needed me then more than ever and I had to put my grief to one side and focus all my energy on being the best dad I could be for him.

I threw myself into the appointments and the therapies and really focused on our relationship as father and son. Add into that learning how to do washing without ruining it, cooking without burning it, and the cleaning, I kept my mind occupied and myself very busy.

How did your parent-carer role change when you and Lorcan met your now-fiancée, Erin, and became a blended family?

It changed massively. Erin and I met towards the end of 2019 and, unbeknownst to me, she worked in a special needs school. It was like fate – like someone had put her in our lives. From day one she has been such a blessing to Lorcan and me. She threw herself into parenting a child with very complex medical needs and has never looked back. She's been there through all the neurosurgeries, the appointments, the sleepless nights, the back and forths to London and I couldn’t ask for a better partner and mother for Lorcan.

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

When we got Lorcan’s diagnosis, there was a grieving process. It broke our hearts. We grieved the loss of an idea of what typical parenting would be and what the diagnosis meant for him. It still hurts to see the difficulties his needs cause him but that’s never going to change because, as a father, it pains you to see your child hurt and in pain. But I wouldn’t change Lorcan for the world. He is such a blessing in my life and, honestly, it’s a privilege to be his dad. A privilege not every parent will get to experience.

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

Very busy. It’s a very structured day and regimented routine daily. It’s tiring at times because sleep isn’t always good with Lorcan and we’re always on the go, from morning to night. My mind is always thinking of the next thing that needs to be done, be that batch-cooking blended meals, ordering from the community nurses, drawing up medications, ordering new prescriptions, changing Lorcan, toileting, bathing and feeding him, changing his PEG, going to appointments, doing Zoom calls, doing therapies… it feels like a full-time job in itself at times, but Erin and I work so well as a team and we divide and conquer daily.

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

It’s hard managing everything. We have to be so structured in our days which means we don’t get much downtime or time to switch off, so that can be challenging, as you feel you’re always going 100 miles an hour and never switch off.

What brings me the most joy is that I can go to bed at night and know that I’ve done my best for Lorcan that day, and he was happy and content and well looked after. He has enough struggles and challenges in his life, so if I can bring happiness, comfort and laughter to his day, that brings me the most joy as a dad.

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

We do laugh a lot in our house. Lorcan is funny in his own little ways and is a cheeky monkey. While he is non-speaking, he makes himself known and can be very vocal at the right times, which always gives us a laugh. He knows exactly what he’s saying.

‘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?

We try to make time for our other kids, be that a trip to the cinema or for an ice cream. Even if just one of us takes them, I think it's important for them to have one-to-one time with us. If on a really rare occasion we get a bit of time to ourselves, we enjoy listening to music, making a nice meal or getting a takeaway and having a nice glass of wine. Or an uninterrupted night’s sleep.

What supports have you put around your family?

We built a house two years ago around Lorcan’s needs. It’s a single-storey bungalow with all-level access for his wheelchair. He has a big bedroom with a wet room attached and ceiling hoist tracks throughout for when he gets older. It has access to the patio, too, so he can go out and enjoy the sunrises and sunsets and get into the garden in the summer months. It’s been built with his future and long-term needs in mind and we are very proud of it.

How do you and Erin juggle your roles of parents and carers while making space for your relationship?

We try to make time for each other. It’s not always easy but we know it’s important. When the kids are in bed or on our days off when Lorcan is at school, we will try to grab a coffee or breakfast or go for a walk and talk openly and honestly. We try our best to keep our relationship light-hearted and fun, because there’s a lot of seriousness when dealing with doctors and appointments and surgeries. We try to be each other’s best friend, communicate well and make time for each other.

Is there anything you’d like to share about Lorcan’s relationship with his sisters, too?

Lorcan has a beautiful relationship with his sisters. They are very aware of his needs and very considerate of them. The older girls are wise beyond their years in that regard. We’re very proud of them and how helpful they are to us around the house and how loving they are towards their brother.

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

That he can be cared for in the comfort of his own home for as long as possible. We built this house so that it will adapt with his needs and we intend on him being looked after here long after we are gone.

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

I wish people knew how lonely, isolating and exhausting it is physically, mentally and emotionally. It’s a lonely place to be because you can't do all the things your friends and family can do, like parties, late nights, holidays and going to the gym. Everything we do takes so much planning.

I wish people would treat Lorcan just like any other child, say hello and give him a high-five. I get so annoyed at adults who should know better than to stare at him as if they’ve never seen a child in a wheelchair. I wish people would just be kinder, because you don’t know how much that means to parents.

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

Be your child’s advocate, be bullish, and don’t be afraid to speak up and be heard. You know your child best. Also, get a filing cabinet system in place because documentation comes thick and fast. Document everything and if you have any concerns or questions, put them in writing.

Lastly, if you're struggling or feeling like you’re the only person going through this, you're not. Reach out to anyone in the special-needs parenting community for advice or help. I found Instagram and the people on it in a similar situation such a comfort and great resource for information and guidance. People are so happy to offer advice and help, so use it.

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

My go-to books are Special by Melanie Dimmitt, Day by Day by Joanna Griffin, The Cracks that let the Light In by Jess Moxham and The Skies I’m Under by Rachel Wright. In terms of podcasts, I listen to a lot. The Rare Life, The Skies We’re Under, Too Peas in a Podcast and Once Upon a Gene are my parenting ones.

In terms of quotes, one thing my dad always told me from a young age and I never forgot it was “this too shall pass”. To me, it means if you’re having a rough day, remember tomorrow is a new day and whatever is troubling you today, it will pass.

If anyone is new to this life and ever wants to reach out for advice or anything I'm only too happy to help. We get by with help from those in a similar situation.

Follow Keelan and Lorcan’s story on their Instagram account.

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