How to Grow Up With a Terminal Sibling
You have a four-year-old and a newly diagnosed two-year-old. How do you explain to either of them that one of them has Cystic Fibrosis and what that means? How many times should you explain to both children what that means and what, inevitably, is going to happen?
As a parent to a child who has a terminal diagnosis, it will be challenging to balance managing the message, siblings and everything else in between. This is from the perspective of a now-grown adult who grew up closely with a terminal sibling and what I felt was helpful, and what definitely was not.
When I was four and Sophie was two she was diagnosed with Cystic Fibrosis. I don’t remember being told how Sophie has CF and what that meant for her and for me. Mostly, it was the scattering of abnormalities that saturated my childhood that gave it away but was mostly accepted as normal. It wasn’t until probably the middle of primary school when I was eight years old that I really think I started engaging with my sister’s condition.
Treating Sophie’s CF like a normal part of our home life was a good way of putting it in the part of my brain, as a child, where it wasn’t something terrible or traumatic — it simply was. Sophie’s physio, nebulisers, Creon tablets, surgeries and hospital admissions were all just a part of my life, and hers, for as long as I can remember.
We lived in Hastings, East Sussex where we were lucky enough to have the Conquest Hospital and their HomeCare team for children. It meant that, for a long time, Sophie didn’t need to be admitted to the hospital every three months, as would be the norm for her so that she could have her regular IV antibiotics. It meant nurses in the living room and physios bending her over sideways to get up this sticky thick mucus that regularly threatened to clog her lungs. I remember we turned it into games quite a lot, Sophie had this triangular foam thing, or foam triangular wedge, that we were supposed to use with her laying over it while mum patted the back of her lungs. For the most part, we used it to shut ourselves into this tiny alcove and chucked blankets and coats over us, since it meant we were being very sneaky and definitely no one would find us.
While many kids might be told not to run in the house, or to keep the noise levels down, we were allowed to run riot — literally, for the run part. Running and laughing and playing was the perfect kind of physio for Soph, which was awesome for us. We’d run circles through and around the house, make loads of noise, hide in the tall grass out back and play like young children should. I was always aware, at least to a small degree, that Sophie needed this or it could mean something bad or painful for her. I didn’t fully conceptualise why and didn’t pay much attention in the way of responsibility because we had our mum taking care of everything, as far as I knew anyway.
Home life wasn’t simple — it never really is for most people — but ours was contextualised such that we were living in council housing on one of the roughest roads in the area. We didn’t really know the difference, we’d never lived anywhere nice or anywhere that wasn’t dangerous. All it really meant was not playing further than the fence lining our garden, which seems a much more normal thing to do now. We had a single mum who had us when she was 17 and 19 respectively, two different dads, neither around (well, kind of), and one of us was going to die young. We were *that* family and *those* kids.
The odds were stacked against her, to begin with, but if anyone could smash those odds it would be Sophie, and she did — but that’s for later. For now, this is my takeaway for how to grow up with a terminal sibling.
- Treat them like they are normal
This might seem like a basic, cookie-cutter suggestion, but it’s really not. In fact, it’s something you actively have to put your mind to sometimes. There’s a balance with this which, as children, you have almost no concept of trying to find “balance” in life. This means that, when they have their hospital treatments, their physio, their thousands of pills laid out in front of them, don’t treat them like a china doll, like they’re weird or like they should be pitied. In my experience, all Sophie ever wanted was to be normal, and I know she’s not the only one.
At the same time, don’t go thumping them and play-fighting with them like you would someone without certain physical proclivities — one time Soph and I were play fighting, I got her in the stomach and winded her to really quite a concerning point without much force, I cannot begin to tell you how terrifying it was seeing my five-year-old sister doubled over unable to catch her breath. She was half my size and tiny in stature, but she gave as good as I got, seven-year-old me didn’t know what it meant to hold back.
The thing is, what is ‘normal’ to anyone anyway? I’ve never had a ‘normal’ life, which a lot of people have marvelled over, so what does being normal even mean? I’ll be honest, the CF was probably the most normal thing about my sister anyway, she was the weirdest, freakiest little sh*t I ever knew, and she was also the best, most wonderful person in my life (not when I was 7, though, I really didn’t grasp those sorts of concepts at that point).
2. Don’t set different parameters for future prospects
This was a tough one growing up. This is something I certainly don’t blame our mother for, her logic was sound and came from a good place but, in practice, did not work. This translated to our mum pushing and encouraging me to study hard all my life because I was destined to go to university, get a good job and do well. Sophie, on the other hand, was encouraged to do the opposite; just get something easy, not very taxing, and don’t push yourself.
So Soph didn’t, she didn’t push herself to the same extent in school, she didn’t get the same level of support and was branded ‘not academic’ because the work she produced wasn’t up to scratch. One GCSE after school, and after her double lung transplant, she realised how passionately she wanted to study psychology and neuroscience, so she strived at college and got herself into university. Soph proved with the many 1sts she racked up that, actually, she was very academic and it was something she had a great passion for.
A good, and fulfilling life does not always mean easy, and it serves well to let the kids (with a guiding hand, for sure) decide what this is for them. If you’re worried because your eight-year-old wants to be a YouTuber, I guarantee that for most kids this will change, and for those it doesn’t — well, fair play to them, knowing what they want and having the determination to stick to it! I wanted to be a lawyer when I was ten because I knew I couldn’t afford the dance lessons to be a dancer. Sophie famously, for years, thought being a leaf blower would be a most amusing job to have and maintained this until she threw herself head-first into psychology and neuroscience. I’ll say that again, leaf blower, we drove past a guy with one of those machines blowing leaves off the path and Soph saw that and thought “yes, that’s me, thatI!”.
3. Don’t let the bastards grind you down
Frankly, having kids comes with its own challenges without the added strain of a life-threatening and debilitating condition. As a sister, the emotional strain as Sophie’s health declined was and is the hardest thing I’ve ever experienced. Working all of this out as a parent, well, I think it’s all I can do to plead with you to do whatever you can to keep your head above water and yourself sane.
Before our mother became a heroin addict I watched the trials and tribulations she faced. People can appear judgemental, doctors and nurses deliver blow after blow, keeping on top of the medication, the hospital appointments and the constant anxiety is hard. Guilt comes hand in hand with that too, which can create a really horrible and agonising cycle.
I can tell you now, that taking time for yourself to reset, take a moment, and keep yourself happy and sane when things get low is the best thing for everyone. You are needed, you are necessary and you are important — and your mental health matters too. Keep happy, keep sane and don’t let the bastards grind you down.
Low points will come, but just as much as the bad is prevalent, life can still be wonderful and amazing. Soph and I never did anything wild, or out of this world, but being in each other’s company we could have the best time, belly-laughing and crying happy years. Resetting allows you to be present, and the best version of yourself and we all need that sometimes.
Conclusion
Here it is, the cliche we hear: there is no right or wrong way to do things, everyone is different and has their own way of dealing with things. Yet, a paintbrush is better for cutting in as a roller is best for the rest of the wall. Together, we can share our experiences which may result in someone else being happier all the more for it.
If you’re the sibling or parent of someone you love who has a terminal illness, drop me a message with your experiences and how you feel about this. Let me know if you’d be happy for me to share these too.
