You have been ill now for 3 years, and I have watched my once chatty, bubbly, happy little girl get worse and worse as the months have turned into years.
I have watched as friends started to forget you, I have held you while you have sobbed your heart out that you just want to be normal and go back to school, and to be with your friends.
I have watched you struggle as you tried to do your tuition in school, and also from your bed.
I can see the pain you are in daily, and you have heard me say many times that if I could have one wish, I would swap with you in a heartbeat so that I could take on the illness and give you back your life.
We chat about days out, or even a little trip out somewhere but even that is a challenge for you, and this past couple of weeks have proven why.
The strength you have shown me has never made me more proud of what a star you are, and no words can ever express that.
We found out two weeks ago that something was going on around your eyes following our opticians appointment, we never for once dreamt of what would happen, but mri scans and further tests showed you had excess fluid around your brain which was pressing on your optic nerve. No wonder you have been so ill.
You had to have a lumbar puncture, you were scared but even when they took three attempts and failed, your face said it all, but you still went in for that 4th attempt, showing what a strong person you are.
The results were a lot higher than anyone thought, and showed you had papilledema and it hit me and Dad then just how bad you had been feeling, and how ill you have been, also slotting into place a few of your other symptoms. We now have a lot more medical support and I hope we are now on our journey to getting you back to being able to start to enjoy life again.
We had a little blip last night, when your migraine headache felt as if it was coming back, but hopefully that is all it was.
Everywhere is full of back to school, and I know that upsets you, as that is all you want to go back to school and be in lessons and be with your friends. I can’t say if this will happen soon, but we have great support on your education and everyone is working at your pace and with what you can cope with.
You really do amaze both me and your Dad and we are so very proud of you.
Lots of Love
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