To my undiagnosed princess

To my beautiful undiagnosed girl,
I’m sitting here with you sleeping in my arms. I’m listening to the wheeze as you breathe, I’m watching your chest go up and down and seeing the odd twitch of your lips as you think your still having milk. You should be in your cot but today I’m keeping you in my arms. 
I pray, hope and have my fingers crossed that in a few years time I’ll look back and tell you how worried you made me when you were a baby! In reality I don’t know what I will be saying.
All I do know is that I am sorry that you have so many tests, that some of the tests hurt you so much. You look up at me, as if to say, “help me” and all I can do is say, “I’m sorry” as I fight back tears. I wish you didn’t have to have to have so many tests, I’m sorry your prodded and poked around and most of the time it comes back as negative. 
I look at your life and know that you will probably have to fight your whole life. You will fight for disability rights, you will fight to be treated equally, you will fight for adaptations and support, you will fight for a blue badge and even when it’s awarded you’ll have to stand your ground as people will question you about it. 
You are unique and incredibly special. No one knows why your organs aren’t do as well as they should, no one knows why you get temporary paralysis, no one knows your syndromes name, but there are a few things that people do know about you. You have the most amazing energy and smile, you brighten up the room. You are determined, you wanted to crawl but couldn’t work your limbs properly so found a way you pull yourself around on your tummy. You are so intelligent already! You have brothers and a sister who will do anything for you, and a mummy and daddy who will fight all the way. No matter how short or long your life will be you will imprint on people’s memories. Most of all I know your amazing.
My precious baby girl you have been though so much and for that I feel guilty. 
Always remember to embrace your differences as the world would be boring if we were all the same. Always keep your determination and remember I try and do what I think is right, as you grow up I will continue to do what I believe is best but as you get an understanding of your condition I am also hear to listen to your views about your treatment. Never be scared to tell me how you feel. 
I love you forever and always baby girl
Love your mummy 


2 Comments Add yours

  1. akyn30 says:

    This is a very touching message for your little princess. Your message to her makes me teary. I am including you and your beautiful family in my prayers.♥♥


    1. Thank you so much. It means so much to me

      Liked by 1 person

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