I have an incredibly unique family as both my brother and sister have a degenerative disease of the nervous system. My Mum is in the last stages of Multiple Sclerosis (MS). So from the get-go I was in a world of disability, experiencing the good, the bad and the down right ugly!!!
Spending school holidays at children’s hospices felt like the norm
I have always been hugely involved with my brother and sister’s care. It was so normal growing up supporting Becky with personal care, tagging along at hospital visits and later back and forth to see her and Craig at residential schools. School holidays were often spent at children’s hospices or hospitals. Hospices were mostly great fun. It gave my parents a break and the staff always made a fuss over me. I guess it was play therapy without knowing it and good opportunity to check in with how I was feeling about life! It’s funny looking back on my childhood, as it was just my norm. I would take my little sister most places with me, ride on the back of Craig’s wheelchair and protect them from horrid kids laughing or calling them spastic. I wasn’t fazed by hospitals or special needs schools, it was just our norm. It’s only since I have had my own family that I’ve realised how different my childhood was. The family holidays we missed out on, the scrap fighting with each other that never happened and having that ally to help me out when I was in trouble.
I’m a parent figure to my brother and sister
It’s funny, isn’t it? You don’t expect to still be caring for your brother and sister when you grow up? With Mum’s life nearing to an end, I am very much the parent figure alongside my amazing Dad. Although Becky and Craig are not cared for at home, we continuously need to advocate for them.
Facetime with my brother is more hard work than helpful
My brother’s health took a turn for the worse last September and that was incredibly scary and stressful. He was in hospital for 3 months and things got grim. Thankfully he is still with us for now, but has moved to a nursing home away from my sister. He is now fed 99% of the time through a jejunostomy and aspirates frequently. I am yet to see his new home properly, as he moved just before Christmas and after he was quarantined in this new strange, unfamiliar place, we then went back into lockdown. Craig struggles to communicate, so facetime is more hard work than helpful.
Becky on the other hand is very vocal and has her own phone. This means she can call me up to 12 times a day sometimes. Which is very annoying. She has little concept of why this is not ideal and can come across rather self-absorbed. Becky is therefore challenged in different ways. We are always managing her emotions, obsessions, and limited understanding of worldly matters.
Before Covid, I took both Craig and Bex out weekly and many years ago actually lived in with my sister. I learnt how to multi-task when I had my son, Jude, to navigate using a wheelchair whilst carrying him in a sling, as well as feeding Craig and Jude at the same time. Again it’s just our “norm’’, so you just crack on with it.
I would not be half the person I am today without my family
Honestly, I feel there are more positives, than challenges, to being a sibling. I know I would not be half the person I am today without my family. I would like to think I am hugely compassionate, empathetic, and worldly as a consequence. I love that my son and step-children are exposed to disability. I hope it helps them appreciate how lucky they are having good health, free from physical and mental limitations.
Death is a constant worry
The challenges are the constant up and down in their health. I am personally very philosophical about death, but nevertheless it’s still a constant worry. I am also really aware if my Dad passed away, I would take on full responsibility of advocating on everyone’s behalf. That is a daunting prospect!!! What I have recently noticed is that I always leave a little room in my life for a crisis to happen. I guess to protect myself from not being able to cope.
There are moments you can go down the rabbit hole of “what if?”. But I have learnt its really dark down there, so acceptance of what is, is key!
The advice I would give to other siblings reading this, is to be honest with how you feel. Talk or write your feelings down and ask for help if it’s getting too much. It’s OK to feel all the feels – angry, disappointed, frustrated, happy and all the rest. At times it is not easy, but you are not your story. You have your own purpose besides being a sibling of someone with extra needs. Do things that light you up and do not feel guilty about doing them. I am a yoga teacher/therapist and I practice mindfulness. Yoga has been my saving grace. Have lots of fun when you can. I actually think it’s pretty cool to have a different family than most!