About Me

IMG_2567 (2)My name is Kylie. I live in Sydney, Australia. I am a 35-year-old wife and mother of two boys – Aidan who passed away one month shy of his 6th birthday and Ollie who is six months old.

I started this blog in 2013 and although Aidan died just over 12 months later, my aim for the blog remains the same. I want to create some dialogue around how to you parent a child with a terminal illness – the hurdles and the joys and everything in between.

While this blog is not specifically about Aidan, he is obviously a vital part of my story and hence it is important to introduce him properly. Aidan was born at 26 weeks and weighed just 580g. At 24 weeks, I was diagnosed with preeclampsia, so we knew even before he was born that his life would be a struggle – we just didn’t know how much.

At 8 months of age, Aidan was diagnosed with a rare mitochondrial disease, known as Pearson Syndrome, completely unrelated to his being premature. As the disease affects every child differently we were not given an exact prognosis, doctors simply told us that Aidan would “probably die in early infancy”.

Our dreams of having the two children, taking them to weekend sports and going camping were shattered in an instant and so we began the journey of parenting Aidan the best way we could. We threw away the baby books and set up about raising our little boy the best way we could, stumbling along the way.

As a final thought, let me say, I am not a superwoman, I am not religious (particularly since Aidan’s diagnosis) and I definitely don’t have all the answers. I am simply one mum out of thousands who are faced with an insurmountable challenge.

 

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12 thoughts on “About Me

  1. Hi Kylie,

    My name is Tracey Carpenter (Nee Ellis).We went to high school together.
    I just saw your story on Insight. I don’t normally watch the show but it grabbedmy attention as I thought they were discussing Cancer ( I lost my mother and grandmother to it 8 years ago ).
    After the show I jumped online and found your blog, which I have just spent the last hour reading!!!! By the way, It is written beautifully……honest, heartfelt and most importantly….utterly real.

    I have a five year old son named Riley, and a 3 year old son, also named Aiden ( I went with the different spelling!!! )

    I’m not entirely sure why I felt the need to contact you… after hearing about your little Aidan and getting the amazing and personal ( and relateable in so many ways) insight into your life through your blog,
    I guess I just wanted to let you know that your story….Aidan’s story…is reaching people, and opening the hearts and minds of others.
    From your posts about Aidan, he sounds like a beautiful and happy little boy. From one mother to another, it sounds to me like you and Anthony are doing an outstanding job!

    Congratulations on your pregnancy, and I wish good things for all of you.

    • Thanks Tracey, it’s so nice of you to contact me and to follow my blog. This is certainly not on my list of things I wanted to achieve when I left high school but I guess we don’t always have a say in how our lives work out. It’s hard to imagine that someone from school is also a mum, it really doesn’t seem that long ago… time really does fly. I’m so happy to hear you have two wonderful little boys. Promise I will keep everyone updated on the pregnancy and my new adventures as I go. xoxox

  2. Hi Kylie! My name is Cameron Von St. James and I had a quick question for you & was wondering if you could please email me when you have a free moment. Thanks! I really hope to hear from you soon and appreciate you taking the time. ☺ cvonstjames AT gmail DOT com

  3. Hello Kylie, I stumbled across your blog today, as I am now seeking some bits of wisdom for myself. For my son, is a terminally ill little boy as well. I find it helpful to see your words, and I hope to see more in the future. I have been dealing with this impending death for 7 years now. To watch your innocent child, someone you love so dearly dying everyday is beyond torment. People talk to moms like me of god and angels and what not, it doesn’t help, as I’m sure you know. I know most people only want to help, but I find no understanding in them. I prayed to whomever or whatever last night and asked that I could somehow, someway find some comfort today, Your blog comforted me today, and I’m thankful to you. Death is a noun, dying is a verb. You have lived through this HORRIBLE verb, and now must start on the journey of the noun. Believe me I will be watching for your blogs, as only a pocket full of people can relate to know what it means, to not want the disease to continue but you also dread it to end. May Aidan find rest now and may you find comfort in knowing your blog helps lost moms like me. I’m sorry you have to be so strong.

    • Hi Alison,

      Thank you so much for your message. It was something I really needed to hear today. I have been thinking long and hard about this blog since Aidan’s passing and would like to continue giving a voice to parents like you who live in such uncertainty. Knowing your child is going to die is a heartbreaking existence and unless you have been in that position it’s something you’ll never understand. Right now I want to kick and scream and beg to have him back but I have known for a long time this was a war I could never win. I intend to write a new blog post this week. I also welcome any submissions from other parents who are in a similar situation and want to share their own experience. I’m glad you can find some comfort in my words but I’m so sorry that you have to live with such uncertainty too. Sending you hugs from Australia.

  4. Hi Kylie

    I’m writing from Together for Short Lives, the leading UK charity for children with life-threatening and life-limiting conditions and all those who support, love and care for them.

    We recently learned about your blog, and the thoughts, feelings and questions you raise really reflect some of the experiences that families have shared with us.

    We thought you might be interested to watch our short film ‘We’re having a baby’ which aims to communicate the needs of families when they hear the news of their child’s diagnosis and also reassure families that there are specialist children’s palliative care services to support them. It’s on our You Tube channel https://www.youtube.com/user/together4shortlives (or click on this link bit.ly/1yH9Uzc).

    While our film signposts people to the support we offer in the UK, we also work with the International Children’s Palliative Care Network which aims to improve the life and care across the world for children with life-limiting illnesses, their families and carers. http://www.icpcnfundraising.com/contact-us/

    We really appreciate the opportunity to share our film with you, and your blog followers, and we hope it will resonate with anyone going through a similar experience.

    • Hi Lou,

      Thank you so much for getting in touch with me. I would love to share your film with my readers on my blog and on my Facebook page. I’ve been wanting to do a page of resources for some time so this might be the kick start I need. The video really hit home for me what it’s like when you get that first news of diagnosis. The falling of the photo frames is so symbolic. I know other will benefit from this as well. Thank you for the wonderful things you organisation does for families like me.
      Kylie

      • Hi Kylie

        That’s wonderful – I’m so glad the video resonated with you and thank you so much for sharing it with others. A page of resources sounds like a great idea. I will pass on your feedback to the team who produced the video – they will be so pleased.
        Lou

  5. Hi Kylie,
    I am a college student doing a project about the experience of having a child with a terminal illness. Would you be willing to answer some interview questions via email?

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