Day 6 of ME Awareness week I am writing a letter to C. I have not done this for a while and although say it to her all the time. It is nice to read it as well.
You have been ill since you were 11 years old. At first we just thought you were getting used to Secondary school. It was new to you and a lot harder than Primary School.
Nothing prepared us for when you had your first crash and the start of our new journey of living with a Chronic illness. We have had a lot of tears and also a lot of laughter.
The early days
At the start when you collapsed as your legs would not work, or you were unsteady on your legs. We would call them your Bambi days. Sometimes I would find you in a heap on your bedroom floor as your legs had given way. Luckily Dad was home a lot of the times this happened, and he would pick you up and pop you back on your bed. Unfortunately, he was not always home and it was left to me. We ended up laughing so much as I tried to get you back into your bed. Probably not the most conventional way but we managed it.
I have lost count of the times I have held you while you broke your heart and cried, telling me everything that was worrying or upsetting you. How much you wanted to be normal and wanted to go to school. Where I would fight back my own tears as my heart broke alongside yours without showing you.
Since you were little you have always had such a love of art, and one thing that you have not lost is your love of drawing. It is something you can pick up and put down. I know I tell you all the time but your pictures are amazing. I am so very proud of you and you have such a talent.
You have an online friend who you have been talking too before you became ill. She is the one person who has always been there for you, every day she is there for you. You have never met but she is going to be close to us in the summer. Your face when you told me and asked if you could meet her was full of joy. How could we say no.
I promise you that even if you sleep all the way there and back and only manage a short time, you will get to meet her. You deserve something to look forward to.
Two years ago you found out that you were going to become an Aunt. Your face said it all, you were not impressed. Since becoming an Aunt, your world has changed. You adore the role and the bond you have with L is amazing. There really is some special bond you two have and your face lights up whenever you talk about her.
None of us know how the future will go, but we will do everything we possibly can so you can lead a normal life.
We love you so much and are so very proud of you.
All my love