If you could go back to the old you, what would you say? What words of wisdom and compassion would you try to impart? What snippet of the future would you dare to share? With any loss, there is a ‘before’ you and an ‘after’ you. They are both the same and undeniably different. There are secondary losses to navigate but with time you may learn to notice some gains. Some shards of light in the rubble. Old you may not believe this could be true. But the seed of hope is a powerful one.
In this poignant letter to her past self, Emma Hartley shares the things she wishes she could have told herself when she received the devastating news of her daughter Eilys’ terminal diagnosis. You can find Emma on Instagram at @hashtag_emma
Dear Me after we got our daughters terminal diagnosis,
I know that you feel like the weight of this diagnosis is going to crush you. I know that you have no idea how to begin to process the things that you have just heard. I know that you were expecting the worst but I also know that you really weren’t expecting the worst at all. The mind plays funny tricks on you in situations like this.
I know that your brain will struggle to process a terminal diagnosis. How could it be true? Eilys is so full of life, so happy and so present. But then if you look a bit closer, you can see it. She stopped hitting milestones; she is 6 months old and she can’t support her head very well any more, she barely moves her legs and she has never sat up or rolled. The battle inside your head will keep striking painful blows but it will get easier. You will eventually come to terms with it. It will just take time. And don’t feel bad that you aren’t accepting things, you are just protecting yourself and that is fine. You will keep doing it. You won’t see her deteriorate because you will always try to put a positive spin on it. You will know deep down but at the same time you won’t allow yourself to dwell on it.
Being told that Eilys had Spinal Muscular Atrophy type 1 will be absolute rock bottom for you, that may seem hard to believe but it really is. For some reason being told that she won’t see her 2nd birthday will hurt more than her death eventually does. It even feels strange saying it. I know that death is something that you will worry about, how will you cope with it and what will it be like. These are questions that you will dwell on. You will make up horrific scenarios in your head and struggle to hold yourself together at times. There really is nothing that I can offer you to make it feel less scary. It is something that I had to discover myself by going through it. But death doesn’t have to be this huge scary thing, sometimes it is peaceful and beautiful and as perfect as Eilys was in life.
The best advice and guidance that I can give you is to keep going, even when you don’t want to and even when you don’t know how to. Start small by just getting out of bed, then just go downstairs and soon enough you are keeping going. You will surprise yourself with how strong and capable you are. You will be able to keep going even though you don’t feel like you can some days. Each day with Eilys will be special and wonderful, even on the days where all you do is survive. You will do some really amazing things with the rest of Eilys’ life as a family. You will keep each other going. You and Joe will keep each other going. Make sure that you allow Joe to talk through his feelings as you go through this. Eilys and Dylan will keep you smiling throughout. Immediate family and close friends will look after you, they will surprise you in ways that you cannot even imagine right now. Try not to dwell on the people who aren’t there or the people who let you down, they aren’t worth worrying about.
I know that you feel like the weight of this diagnosis is going to crush you. But it won’t, Eilys’ diagnosis will be the making of you in a lot of ways. Eilys dying will make you stronger, kinder, more compassionate and less selfish. Her life and death will teach you to appreciate the moment, to appreciate your friends and family more and to enjoy the smaller things in life. I know that you have no idea how to begin to process the things that you have just heard. But you will, you will process it and you will make plans and they will be wonderful and the memories will last a life time. I know that you were expecting the worst but I also know that you really weren’t expecting the worst at all. But even when given the worst, worst news possible there is always a silver lining. Eilys is the silver lining. She may have a life limiting condition but that will not limit her life or the impact that she makes on others. Oh and take lots of photographs and videos.
You can do this,
You are stronger than you know,
And give Eilys a big hug from me
Future Emma xx