Amber is reaching the world..

11th February 2022

A big part of my writing this blog is to try and reach other families whose lives have been touched by Trisomy 18, wherever they may be in the world. To tell Ambers story and how incredible she is, defying her diagnosis and the statistics, proving that T18 is not ‘incompatible with life’ but is instead ‘life limiting’. Life limiting is how Trisomy charities and experts wish the condition to be referred to, it is how I hope that all doctors will refer to both Trisomy 18 (Edwards syndrome) and Trisomy 13 (Patau syndrome) one day in the close future.

I’m sure some people will read this and think that because she is no longer on this earth that the diagnosis of ‘incompatible with life’ is true but I disagree.

She LIVED. Yes much of her life was in hospital, I had difficult, often impossible choices to make with her medical interventions and treatments. It is, without a shadow of a doubt the hardest, most traumatic experience I will ever live through. But she lived. She was here, she was mine and I was hers and she brought such joy, hope and love with her which will remain with me forever and with many others too.

Her whole life with me she knew she was loved, IS loved. I believe spirit lives on and that she is still with me. One day I will hold her in my arms again and every day without her is a step closer to us being reunited again. That doesn’t make it any easier being without her, I survive hour by hour, on little sleep and many tears but one day I will look into her eyes again and we will be together for eternity and maybe I will find some peace again.

Where I go from here I’m not certain, I have a few ideas brewing at the back of my mind behind the fog. Once I’ve dealt with the PTSD and am able to sit with my grief, my hope is these ideas should become clearer. Amber has changed my life and my world. I will never heal from losing her. I am not the same person I was before but she will move with me throughout life always and influence what happens next. For now, I write here.

I’d not really thought about the technicalities when I decided, still at the time sat in SCBU, to publish a blog on our journey. I have a love/hate relationship with computers and honestly I’m not brilliant with the ‘tech stuff’ (thank goodness for Youtube!) However, exploring WordPress and gradually learning how to put together these pages for Amber, I realised I can see how far her name is spreading.

I can see daily views, which pages are being read and how many people are reading Ambers story. Most fascinating (in my opinion anyway) is see where these views are coming from in the world as each country is listed by name.

This morning over coffee I’ve logged on and been randomly flicking through my WordPress home hub, for the first time I’ve looked at the country stats for ‘all time.’

My little fox has reached 26 countries!

Highest of all of course is the UK, not surprising since I gave SOFT UK (the UK support group for T18/T13) permission to share it on their website and they have been a huge support for Amber and I throughout and to this day. Also since I am in the UK I am in regular contact with other groups and families, as well as my own friends and family who I know read Ambers page.

However, reading through the list of countries her beautiful face and bravery is being read all across Europe, Canada, the United States, New Zealand, Australia, across Africa including Egypt, China, Singapore and she’s even reached the Philippines and the United Arab Emirates.

I know I’m not the only mother to write a blog about my precious, complicated baby girl (or boy). I believe we likely all do it for similar reasons. To keep them alive and with us always, because we need to speak their names and talk about them constantly. To try and make sense of the pain and difficulties that come with being the parent of a medically complex child and all that it entails. To talk about the absolute joy and happiness despite everything else, to tell everyone how amazing our children are and how well they live or lived. To help other families make choices at diagnosis, at birth, in hospital, at home and of course, tragically after a loss. To offer support and advice and comfort or sometimes to simply listen to their pain and know you/they understand each other.

Also though is to share them with the world, to make others aware that our children exist, they live, they smile, they find joy and love and happiness in their lives, no matter how short or long that life may be. To let the world and the medical community know that despite their diagnosis they deserve to live.

Our Trisomy children are each unique, their medical conditions can be few or many. Not one of these children are exactly the same and sometimes health conditions are not immediately apparent, for example Ambers malrotated bowel wasn’t discovered until she was 6 weeks old. Whatever choices families have made, or have to make, whether for interventions or comfort care, each one is deeply individual and difficult and we need to trust in our child’s medical team to help us and not to judge or discriminate.

Amber and I were incredibly lucky, both my and her doctors and nurses were amazing and open, when questions arose about where to go with her treatment, I would usually simply say, ‘What would you do for a child without Edwards syndrome? Lets do that.’ It always opened the conversation and worked for me. It helped that I did intensive research both before and after her birth about her individual health conditions.

So yes, in 26 countries my Amber has been seen, her journey told. I hope this will be part of her legacy, part of the legacy from other families whose stories are also read about, that our children will pave the way to hope and life for others and perhaps help create change, both in treatment, attitude and understanding of such a diagnosis.

Then of course there’s the simplest reason to write about our little ones, to tell the world we love them.

Well Amber, I love you, always, endlessly and forever. All the way to the moon and back.

And now the world knows it.

xxx