During the lockdown, we had plenty of days forced to stay at home and it gave us all a lot of time to think about our past. I have realised an area of passion for me is allowing individuals a voice – and ensuring students in school are listened to as there is often a reason why they act out. During Covid when working from home I stumbled across a TED talk called ‘Recognizing Glass Children’ by Alecia Maples, and it touched me. From a very young age, I always wanted to have a sibling. I would sit at lunchtime with my packed lunch in the dinner hall in Guesting Primary School and talk with the other class friends about having a sibling.
Growing up I have always watched friends having a sister to fall out with over friendships or to plan family birthday gifts with. Or I watched friends have an annoying brother that doesn’t enjoy the same hobby as them but has always been dragged along to watch. I have grown up listening to friends compare their siblings or complain about them, but no one shares how fantastic they are. We need to make sure we appreciate the individuals in our family that we have as a precious gift; we often take for granted.
‘A sibling is the lens through which you see your childhood.’
When my sister was born and placed on a life support machine on the 16th of February 2002, at twenty-seven weeks of age, after being rushed to London Hospital from Hastings a couple of days earlier I did not know what to expect. When my Nan told me, she had been born and named Katie I was excited to think I would meet her shortly. It was then explained to me that she was on a life support machine and was very poorly. She had been born with cerebral palsy and was struggling to breathe from her organs that had not developed properly. I was instructed that would be called if there was any news – so I waited each day. Weeks past and from Hastings, I was reminded to be prepared as she was still very poorly, with limited progress and being kept alive with oxygen and wires. During the first year of hospitalisation I only visited her a few times. Each visit was difficult as something would alarm, or I could only touch her tiny blue hands covered in scars. I was taught baby first aid and instructed on oxygen cylinders.
‘It’s not what I asked for, sometimes life just slips in through the backdoor’ from She Used to Be Mine, Waitress.
While Katie was in London, my nan moved in and slept in my single bed, and I laid on a mattress on the floor while we awaited news each week to see if the situation had improved. Every day at school I was expected to continue completing my classwork, go home and complete my homework, or carry out a ‘normal’ routine expected. I continued all my hobbies of keyboard, swimming, brownies, and dancing to a good standard.
When my sister finally returned home after a year in hospital care our family held onto the hope that would come one day. Sadly, every year has been met with new challenges to overcome. Going through secondary school I felt very alone, and it was implied I was selfish if I didn’t accept the situation. I never spoke about my feelings as was encouraged to be quiet as Katie was going through a lot more than I could imagine. I felt I needed to step up to take on the role that I ‘was always fine’ because if I dared say anything else, it would be implied that I wasn’t being considerate to others who have it worse off.
It turned into a new daily routine. On Mondays at 6.30 pm on a school evening, we would have just sat down to have dinner. But everyone leaves the table as Katie’s machines are bleeping and milk has spilled all over the floor. I was left at the table alone. It’s a Sunday morning at 10 am and we cannot leave the house today to have breakfast as the weather outside is too warm and Katie needs to be fed as she vomited it up last night. It’s a Friday evening at 9 pm and I finish dance rehearsals for the upcoming festival, but Mum couldn’t pick me up as she needs to put Katie to bed. I come home excited to tell everyone about my routine, but I was always met with everyone in bed as they needed to monitor Katie’s bedtime. I would go to my room alone. It was winter near Christmas and Katie was very unwell. She had been admitted back into hospital, so we needed to visit her after school and then sit in the ward and watch the TV. It was then Spring and another hospital admission came for further tests. The doctors came and went from Katie’s room on the ward like a supermarket, each staff member being a new unknown face every time we entered. This has continued every week, every month, every year. Still to this day, I will call home in London and five minutes into the phone conversation I will no longer be speaking to anyone as my Mum will have had to go to help my sister who is unhappy in her wheelchair.
In 2015, Katie was admitted to a London Hospital. Katie was overdue for a difficult hip operation as her spine was twisting at a rapid rate and proving it to be very uncomfortable to sit in any wheelchair. Katie struggled to come around from the operation and was placed on a life support machine once again. They had tried to resuscitate her twice already, but it had failed. Each attempt had been unsuccessful, and it is not advised to keep repeating this process. It was a time when I saw my Mum, Stepfather, and Nan struggling to accept what was going on. My Mum kept telling me daily what her wishes were for Katie and was unsure what the future would be if she did survive. My Stepfather was unable to accept letting her go and having difficult conversations not accepting to sign for her to be let go if she doesn’t breathe. And then daily phone conversations with my nan telling her the situation and hearing my nan wishing she was at peace and not in pain. It was a time like Alecia Maples suggested in her TED talk that every feeling of sadness, guilt, worry, and fear was something I was experiencing too but was not being asked how I felt. Back at home, I went to the gravesite with Nan to ask for Katie to be in the children's section if she passed away. I dressed up in the evening in a pink party dress to show my nan what I would wear to her funeral and sat making plans. I was visiting the hospital in London and attending meetings about not resuscitating and being asked by my Mum to support it all. I put on a brave face and came into the hospital on a day that was potentially her last to paint her nails and accept our fate. On this third occasion, my sister did breathe.
Life has always been about my sister, Katie. It has been a life where we could only leave the house if Katie was well enough, if the temperature was right, and it was close by. Growing up I heard friends going to water parks, theme parks, holidays, restaurants, ice skating, or even just to the park with their siblings while I sat home watching her trying to be fed. If I was at school or managed to get to dance club everyone would ask ‘Is your sister, okay?’ - she never got better so people stopped asking. I believe people and family did hope better times would come but sadly nineteen years later we are still in the same boat.
My sister has difficulties with it all – she is unable without support to do any functions that would keep her alive. She struggles with her immune system, breathing, temperature control, is tube fed, cannot control her limbs so can’t’ control her hands, walk, or hold her head up. She is unable to speak or communicate and is partially sighted and deaf. I have learned a lot about partially deaf children and how to communicate with them. I have learned about children that have had operations to be able to eat, the difference between a gastrostomy feeding tube and a PEG. I have learned to not be frighted by wires, machines, oxygen tanks, blood, and operations. When growing up it wasn’t a topic anyone wanted to speak about, so I just accepted to not speak about it anymore.
Difficulties with Katie needing twenty-four-hour care led to my family feeling very overwhelmed and unable to see my emotional or physical needs. What my family didn’t spot or take time to see was that when my sister woke up in the night throughout my secondary years when the lights came on and her SAT’s levels were low, I woke too. The anger and frustration I had that I would never experience a trip or normal vacation with my family ever again. Pressure on my shoulders to make sure I achieve my grades and get a well-paid job to be able to support myself. The pressure to understand the procedures and statements my sister would need for years to come. I have juggled upset and grief in the past when accepting her death and turning off the life support machine. I felt embarrassment growing up from the looks everyone would give us and my sister for walking the wheelchair down the road. I experience a lot of worries in my teens that partners and friends wouldn’t accept me for because of my family circumstances. Anxiety about one day having to care for my sister in the future or be the main caregiver, a topic that is an elephant in the room to discuss. I have experienced times of guilt and confusion because my sister was given so many disabilities and I am normal.
‘A sibling represents a person’s past, present, and future.’
Now, as an adult hoping one day to have a family of my own and working hard to support students, I think it is important to reflect on my own stories. No one looks at how much it can affect a sibling or loved ones coping with disabled close family members. I want loved ones to know you are not invisible, and the strength you have keeps everyone going. I want individuals to know life doesn’t give you anything you cannot handle so wake up every day and be ‘badass’ fighting for the day ahead. There may be times where you feel lonely but remember you are never alone. I don’t believe I am selfish to have wanted a sibling growing up that was well and accepting that being a sibling was hard. It was hard when I was a young child; it was hard in my teenage years; it’s hard now in my adulthood, and I’m prepared for more hardships in the future when I may take possible more responsibilities. I want families to be mindful of mental health issues and remember that listening to loved ones and validating their feelings is very important. I want to end this by saying I am not seeking any sympathy. I have come to love my sister with disabilities. I’ve come to love this label. It’s not my whole identity but it’s certainly a large part. It’s shaped who I was, who I am, and where I’m going.
‘You throw your head back, and you spit in the wind. Let the walls crack, 'cause it lets the light in. Let 'em drag you through hell. They can't tell you to change who you are.’ That's all I know so far, Pink.
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