Diagnosis and devastation

This is the hardest and most personal post I’ve ever written on here but after much thought I’ve decided it’s the easiest way to let friends and family know the situation as I find it very difficult to talk about without becoming tearful and emotional. As most of you know I am 25 weeks pregnant with a little girl. About 5 weeks ago she was diagnosed with a rare, chromosomal abnormality called ‘Edwards Syndrome/Trisomy 18’ which means she has a third copy of her 18th chromosome. It is an extremely complicated, serious condition and the last few weeks through the devastation I have been learning as much as possible, talking to doctors in Glasgow and Inverness, parents in support groups and even an expert doctor in the US. Despite being given the option of ending my pregnancy, I have decided to give our little one a chance of life. Her future is uncertain and we do not know if she will make it to birth at this point, nor if she does how serious her medical needs may be or how long she may live. My doctors and midwives (a very special thank you to Mairi especially ❤ ) are amazing and supportive, we are discussing endless possibilities for her care dependent on how the situation evolves. To those of you I’ve already confided in (you all know who you are ❤ ) thank you for all the love and support, prayers, healing and Buddhist chanting you have given so far… All of you have kept me going and breathing in my darkest days. To everyone else, I will try to update as we go but please know I don’t many answers right now. Also to locals…please be aware I have a lot of hospital appointments at the moment. The post office may be shut on those days and unfortunately this is unavoidable. I will do my best to keep you informed and your understanding is appreciated. I am trying to take each hour one at a time and consider every kick she gives, each day I get through as a gift and something to treasure, so if you see me post pregnancy updates and photos, please understand that I am trying to create some ‘happy memories’ through this indescribable heartbreak and the endless tears. Whatever the future holds this is our much wanted, much loved little girl, ‘Amber Marina Lily’. Please keep us in your prayers, whatever your beliefs I welcome all love and healing, my hope is to hold her in my arms, see her beautiful eyes and bring her home.