Again, a topic I don’t discuss very often and have avoided throughout my childhood. I tried to not have friends invited around my house or dodge questions to ensure I wasn’t asked my opinion. I used to always vote for getting ready around someone else’s house as it would work better. When I was nine years old it was announced I was going to have a sister, something I had been wanting for years! One night, I heard a massive thud and then a voice in the distant asking for something. Half asleep I got out of bed and made it to the landing to find my Mum at the bottom of the staircase in a crumpled whimpering mess. After this, life changed.
My Mum and sister Katie were rushed to a London hospital and for days all I knew was that they were both in a very critical way. My sister was born at twenty seven weeks and five days, weighing just two pounds. I have a sister who on paper has quadriplegic cerebral palsy, lung disease, pockets in her lungs, and is both deaf and visually impaired. My sister cannot eat, drink, swallow, walk, talk, has no temperature control, can’t move her hands or feet in control or even go to the toilet. She has been cared for all her life and must have twenty-four hour care every day.
After her birth, months of hospitalisation turned into nearly a year of hospital care before my sister came to stay at our home. It was very difficult to understand as the home I moved back into had now changed. Katie has ended up having multiple operations over the years and been hospitalised with many different illnesses. There have been many times I have been told to sit down and understand how ill she is or if the machine is turned off and she doesn’t breathe she may die. I have discussed funeral arrangements, her grave and asked to give my opinion on her lifeline on many occasions.
In the first couple of years I tried to help with small jobs, or I wanted to be part of everything by learning medications or pushing the pram. At the start I would sit with my Nan throughout the evening and pray she would survive. Over time, I realised the situation was out of our hands and that the medical services we received would continue regardless of our wishes. It was difficult in my teens as I was juggling a lot of emotions including worrying about Katie which was always covered up by the guilt I felt for my Mum dealing with the situation. I do believe a lot of anger came from feeling abandoned and resentment that all things I had known previously stopped during my teens (from no individuals fault). If people asked me could I have done more to ‘care’ for her – this answer would always be yes, but the problem is for some reason it never felt right.
On Sunday 16th of February 2020 (last Sunday) my sister celebrated her eighteenth birthday. Every year a birthday has approached with a surreal feeling. Half of me leaves it to the last minute to prepare myself after the years have gone past and the other half of me is my normal organised self and wants to arrange everything. I think I choose to not accept it or pretend it's not happening for as long as I can just in case something bad happened. Over the years, many occasions have been spent in hospital and family time has not always been able to happen due to complications. ‘Expect nothing and you won’t be disappointed’ has always been a motto I have lived by without meaning to.
Every year there are new challenges that await us whether it be an illness, surgery or being let down by health professionals. This year was no exception. As Katie turned eighteen, by law, she became an adult. Health professionals decided it is in her best interest to live permanently in a hospice as, this way, she will be able to mix with peers and learn to the maximum ability. As a family we do not agree and will spend the next few months fighting a court case to gain power of attorney.
When I am at work a lot of people surrounding me are celebrating special birthdays including their children's' eighteenth, friend's sixteenth or sibling's twenty firsts'. People discuss the gifts they will give, the surprises they have planned and how much they are looking forward to it. An eighteenth birthday is meant to be a special one. I know I would give anything to have one day to spend with my sister that was ‘normal’. I know that if that had happened, I would have spoiled her rotten and bought her everything she wanted. I would have made her special occasion the best she could imagine, and I would have spent as much time as possible creating memories.
I’ve always been ready for a certain phone call to tell me she is back in hospital or she has sadly passed away. I know that for her time will pass and what is meant to be will be. As my Nan would always say, and her lasting messages were, that she will always be looking after Katie in whichever place that may be. I only have one sister, and I love her very dearly, but I have grown to accept that, sadly, her life is out of our control. I have realised no one deals with situations in the ‘right way’ as we all deal with them in our way. I distanced myself over the years and partly kept myself busy with distractions to occupy my mind. I don’t know if I have done this subconsciously, as I know Katie's life is limited, or if I've not been able to accept the sister I wanted changed the rest of my life in a way I didn’t want to accept at nine years old.
'Someday everything will make perfect sense. So, for now, laugh at the confusion, smile through the tears and keep reminding yourself that everything happens for a reason.'
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