My cousin

“There’s nothing fair about being taken into a hospital side-room on a beautiful sunny May afternoon, and being told by a consultant with tears in her eyes that your sweet little brother who has Down’s Syndrome has cancer. There’s nothing fair about realising he can’t have chemotherapy and has only months to live. There’s nothing fair about having to physically restrain him in his distress so he can have the dressing on his Hickman line changed.

“There’s nothing fair about visiting every weekend and having to leave each Sunday evening not knowing if you’ll ever see him alive again. There’s nothing fair about having to help your mum and dad hold him down and force him to take medication he didn’t understand the need for. But knowing it was steroids which might hold back the cancer and keep him well for one-more-month.

“There’s nothing fair about going on special days out, celebrating birthdays and Christmas, knowing it will probably be the last time you do it with him. There’s nothing fair about watching your brother get an infection and not be able to stop him shivering, then having to take him to hospital at Christmas time. There’s nothing fair about having to hold him down again so the nurse can put a cannula into his hand to give him medicine that might keep him going for one-more-week.

“There’s nothing fair about watching your strong and independent brother lose the ability to walk and dress himself. There’s nothing fair about waking up in the middle of the night to change the sheets on your brother’s bed because he’s sweating from another infection. There’s nothing fair about getting a call from your mum, telling you to come home that evening because your brother might not make one-more-day.

“There’s nothing fair about watching your parents lose their adopted son, even though they did it with dignity and grace I never knew possible. There’s nothing fair about watching your brother hardly able to breathe and kissing him for what you didn’t know was going to be the last time.

“There’s nothing fair about sitting, holding your dead brother’s hand only twenty minutes after that kiss, having literally watched him die. There’s nothing fair about having to decide with your parents what coffin he should have and where he should be buried. There’s nothing fair about having to follow that coffin to the cemetery, seeing it lowered into the ground and throwing a handful of soil into the grave.

“There’s nothing fair about going to the cemetery on his birthday a few months later, to leave a present on his grave instead of watching him open it. There’s nothing fair about receiving an email on a normal day at work, with a PDF file attached showing a picture of your brother’s gravestone.

So, actually, there’s nothing ‘fair’ about someone dying and, trust me, the above isn’t the half of it.

“How about instead of brushing it off as if it’s not a big deal, to watch someone you love so much die in front of you, you actually just acknowledge how rubbish this whole thing is. That my family and I have endured what no-one should ever have to endure. That my little brother fought an awful disease hard but lost the fight. That my parents buried their little boy when no parent should ever have to bury their child. That this is all desperately sad and we’re never going to get over it. And that even though we know he’s gone to heaven, we’re the ones left behind and are going to be recovering from the events of the months leading up to his death for years.

“Let’s not pretend that death from a terminal disease isn’t sad and that there’s ‘to be fairs’ and ‘at leasts’ to be said about it. I might put a positive spin on it on a good day, and talk about the fun months we had, the great memories we made and the lessons we all learned. But the reality is actually that we shouldn’t have even had to make those memories in that way in the first place, and at the moment I wish I’d never had to learn those lessons. Because if we hadn’t had to make those memories or learn those lessons, it would mean that my brother would still be here at the centre of our family. And that the coffin and gravestone would still be comfortably hypothetical, for a time in the future when death was more expected.”

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