Today like every day lately, I woke up feeling down, I have been like this for a while now.
I should be happy, I have a roof over my head, I have food in the cupboards. I have an amazing Husband and beautiful children. And a mad dog that can always put a smile on your face. We have our own business which my Husband has worked hard at with me helping. And of course I have my blog which I love.
My little family are my world and I am so lucky to have them. So why do I wake up feeling like this everyday lately.
As you know my Daughter has been ill since New Year. Since then everyday has been a huge battle. She just does not seem to be getting any better, and is having huge problems walking. I actually emailed into school this week to say that she probably would not get as far as reception, let alone into an actual class.
She is in pain constantly, and is so down and fed up. I have to be the strong one, the cheery one and the jokey one around her. As I am her Mum, I have to do these things. I go and sit on her bed, or if she has been able to get up and come downstairs for a short while, I sit next to her and we chat and we have a little giggle about something silly. Just for that short time I have my little girl back with me.
I see her chatting to her friends, but see the pain in her face when they are doing something. I see friends on Facebook saying they are doing this, or going here and it hurts, like a knife in the heart. My beautiful girl can not do those things. I think of the nice days we are having now, and the things we could do. I have promised her so many days out and trips. That if she does get better I really hope she doesn’t remember or we will be bankrupt.
I am best friends with my Daughters Consultants PA now. As trying to sort medication out is a nightmare, and a constant battle, as nothing seems to work. Both our Consultant and his PA have told me, I am not being a pain, I am just being a Mum. But I just feel like I am being annoying, when all I want is my Daughter to have some relief from the pain.
School have now realised that she can not come in at the moment, and the pressure has been taken off me there. But I am constantly asking, for some help with her education. Although, she is off ill, she is totally wiped out all the time and can not concentrate. She can not read a book at the moment, something she has always loved to do. But her education is suffering, and they just seem to not come back to me on this. So this is another constant fight.
Every morning I go into my Daughters bedroom, with a smile on my face and a cheery Morning and how are we today? question. In the hope she is going to say I feel a bit better. But her face says it all. At bedtime when having our chat, I always say you never know you might say you feel a bit better in the morning.
Having something like this, really shows who your actual friends are, people I thought would show some sort of support, have not contacted once, even when I have said we are at A&E or hospital etc, just total silence. And you know what, that hurts, just as much as seeing my Daughter in pain. I am always there for anyone. So this has been a lesson to find out who my true friends actually are.
We still have no formal diagnosis yet, and I don’t want to tell my Daughter what it could be. But I had a much needed chat with a friend the other morning, and her sons friend has it, and it will change our whole lives.
So, this is the reason I wake up feeling like this everyday. I feel alone, abandoned and let down, and scared, and fed up of trying to get through the brick walls that keep appearing.
But today, I woke up to see posts all over my Facebook. About a friends beautiful baby girl who died 7 years ago today aged 6 months. I remember that day, she was such a little star and she did not die in vain. They set up a charity in her name to help others. You can find out about the charity here.
I should be happy, as I can still hug my Daughter, wipe away her tears, take her fears away, so on goes that smile, and off to get on with my day