Kylie's story: learning how to cope when you've lost someone close and tips for other people.

Today I introduce my very first guest blogger. Kylie is a great friend of mine who is also about to "officially" become family when I marry Mick next October. Kylie is an amazing young lady who juggles being a wonderful supportive wife, a caring, devouted mum, studying accounting and also continuing to face the emotions that come with losing a beloved sister. Learn about Kylie's story with grief and the tips she has for others in this blog. Thank you Kylie for opening up on a difficult topic to help others!

Kylie's Dad, Mum, Kylie, George (her husband) and little miss Maya!

As I stare at a blank page I wonder… How do I write about grief? Perhaps I begin with a much shorter version of my story…

Kylie's Story

I grew up with one sister, Kate, 2 and a half years older than me. She was born with a disease called Mitochondrial Myopathy which caused Cardiomyopathy and a multitude of other health issues. To explain in English, she had an enlarged heart and difficulty producing energy. My Mum always explained to people that Kate’s energy burnt out quickly like a birthday candle, whereas our energy was like one of those huge church candles that burns for ages! Kate could walk, but she needed a wheelchair or gopher to walk any further than around the house. Despite this diagnosis she was born with determination, attitude and a sense of humour to kill.

The mitochondria creates energy in your cells.

I grew up knowing, and witnessing, that my sister was sick. We had to have lots of quiet ‘rest’ time and we didn’t do the active things that other families did. We didn’t often go to the beach and we didn’t go camping because Kate would ‘over do it’ if she tried to swim or walk, sending her into heart failure if she did. 

It was a bloody good excuse really, every time Kate got sick of me annoying her, she would tell Mum that she was tired, and I HAD to stop ‘aggravating’ her. 

 We spent most of our time together and fought like any other siblings. We recorded ourselves on a tape pretending to be radio hosts and featured songs on our channel such as Mmmbop. We played Lego, dolls, had game boy battles, played games on the computer, played the piano and of course talked about boys.

When Kate was diagnosed, Mum and Dad were told that she wasn’t expected to live past the age of 2; an expectation that Kate exceeded by 16 years. 

They provided her, and I, with a childhood full of adventure. We crammed more things in to her 18 years then most would've done by the time they're 80.

 In 1991 our local community raised money to grant Kate’s ‘wish’ to go to Disney Land in America. We also went to universal studios, SeaWorld and toured Los Angeles. We also stopped over in Hawaii. But more importantly, we met Mickey Mouse and all the Disney characters that we loved! 

That trip gave my family a lifetime of memories that we are forever grateful for.

Kate & I with Snow-white                            Kate with Mickey Mouse

In between school and Adelaide Womens and Childrens hospital visits, Mum and Dad showed Kate the different elements of Australia in a way that she could appreciate. We slept in an underground motel in Coober Pedy, drove around Uluru and up to Alice Springs where we went hot air ballooning. We traveled to the Gold Coast where we went to the theme parks and were front row at Bardot’s first concert. We went to Cairns where my Dad surprised us and hired a VW convertible that we drove with the hood down through the rain forest. We went to Victoria and went looking for gold at Sovereign Hill and made a snowman near Bright. We visited the Australian Capital, Canberra, and saw Parliament House. We drove through the Snowy Mountains to Sydney, saw the Opera House, drove over the bridge and went on a ferry across to Taronga Zoo.

Mum and Dad took us to countless stage shows, Cats, Oliver and Phantom of the Opera to name a few. We saw the circus and many other concerts including Kate’s favourite band, the Corrs. We went to the shack at Coffins, went fishing and saw dolphins and seals in the wild.

Looking back, my sister was my best friend. We did everything together. Five days before my 16^th birthday, my worst nightmare became a harsh reality. My childhood was over and I was now an only child. Sibling Grief…it’s pretty shit to put it nicely.

 

               Me & Kate back in the day!                                 Me & Kate dressed for Kate’s year 12 Graduation

Grief

 

The Australian Centre for Grief and Bereavement defines grief as ‘our response to loss. It is the normal, natural and inevitable response to loss, and it can affect every part of our life, but it is varied and different for different people.’ Grief can affect your whole thinking, leave you feeling intense sadness, anger, anxiety, disbelief, panic, guilt, relief, numb or even depressed.

I can only speak of what I know and this is sibling grief. I lost my only sister. It’s funny how we use the word lost. Lost seems to indicate that I should be able to find her again. In the first few months that is exactly how I felt. I would race into her bedroom to tell her something, only to quickly realise that it was not on this earth that I would find her again. So many times a question came up in conversation, only for me to say, oh ill just ask Kate,…ohh…

I had been to funerals before. I had cried at funerals before. This time, for me, it was different. I can remember telling my parents, through red swollen eyes, that I just wanted everything to go back to normal. 

They helped me to realise the reality that we had to adjust to a whole ‘new normal.’ 

I went from having a sister, friends and pretty normal parents and family, to no sister, many friends too young to fathom my grief, and parents that were trying to deal with a world of hurt themselves. I graduated to a deeper understanding of life, no longer naïve to the impact that the real world could enforce. 

I had to quickly realise that the world does not stop when your own world comes crashing down and somehow find my new identity, without my sister who made me who I was.

Mick and Kirsty holding Maya, Kylie's daughter. Mayas stem cells have been used for research in to Kate's illness.

How to speak to someone who is grieving.

The hardest thing was having to accept that people who had not grieved like this did not understand, let alone know what to say.  

Within the first month after Kate died, I overheard someone saying ‘isn’t she over that yet’ as if I’d had the flu. I only wished that I was still so naïve like them. Other family and friends went above and beyond in their support and kindness, which I will remember forever.

It is common to feel awkward or uncomfortable when trying to comfort and communicate with someone who is grieving. Many people do not know what to say or do. I can only suggest that you read my tips below as a guide, from a bereaved person’s aspect of how to make a sensitive situation a supportive one.

Maya has her aunties middle name Kate. Maya Kate.

What to try and avoid saying to someone who is grieving.

Avoid these Clichés:

• Aren’t you over that yet/you need to get over it (it is not something you ‘get over’ like the flu, it is something that you have to learn to live with)
• I know how you are feeling (no one can know how you feel)
• He/She’s in a better place/its part of gods plan/I’m praying for you (the person you say this to may or may not believe this, or may be questioning their faith since the event so its best to keep your beliefs to yourself unless asked)
• You were lucky you had them for …. years/it was their time (this sentence, or similar, is not helpful to the bereaved, no matter how long the person lived, their family most likely wants them around longer, gratitude may or may not come later, nevertheless unless you are the bereaved, don’t tell the bereaved they are lucky)
• You are still young, you can have another baby/find another husband/wife (Again, I imagine this would not help. Replacing a loved one is not like replacing an object and the bereaved may not be ready to discuss their future with you)
• You must be strong (people need to express their grief before they can heal, so let them)
• Pure and simple avoidance (this crushes more deeply than any of the above, please do not avoid someone. If it were you, you would want their support no matter how small)

Kylie and her ever supportive husband George.

What is helpful to say to someone who is grieving.

I found this on the Helpguide website which I think is extremely helpful when it comes to what to say to someone who has lost a loved one.

• Acknowledge the situation Example: "I heard that your_____ died." Use the word "died" That will show that you are more open to talk about how the person really feels.
• Express your concern Example: "I'm sorry to hear that this happened to you."
• Be genuine in your communication and don't hide your feelings Example: "I’m not sure what to say, but I want you to know I care."
• Offer your support Example: "Tell me what I can do for you."
• Ask how he or she feels, and don't assume you know how the bereaved person feels on any given day

Sometimes, just being there, even in silence, can be the best support you can give. 

Sometimes the bereaved may not want to talk. If they snap at you, don’t take it to heart as they may be experiencing the ‘anger’ of grief. Other times they may wish to share their story, over, and over again. 

NEVER change the subject if someone begins to talk about their loved one. 

 Feel honoured that they wish to open up to you. If they cry, so be it, haven’t you heard the saying ‘its better out than in?!’ That person would be forever grateful for your support.  

I love talking about Kate…I have to, to validate her life and my own childhood. I had a sister. Her name was Kate. She was my best friend. It will be 10 years this March since she died and I STILL grieve for her.

Call, text, facebook or hug your loved ones, tell them how you feel, because you never do know when it will be the last time. Life is short…so live it up!

Take care, 

Kylie xxx

To learn more about Kate's illness, click here: Fact Sheet on Mitochondrial Myopathy

You can also like the Facebook page on  Mitochondrial Myopathy