Dear Mums and Dads of Children with a chronic illness
I want you to know you are not alone, although you may feel very alone at times.
I know what it is like to have your once healthy and happy child. Then suddenly over night become struck by this wicked illness.
They go from leading a ‘normal’ life of going to school, seeing friends and being children.
I have sat and held my child tight while she has cried her heart out. With the ‘why me’, when she is in pain, when she could not sleep through pain, when she felt so ill.
I put that cheery smile on my face every morning, and hide how it is tearing at my heart.
I have faced that brick wall, time and time again, with Dr’s, education and the many others. No one tells you how hard the fight is.
I have also faced the misunderstanding of friends who seem to not care. And have learnt who our real friends are. This is something that has really hit me hard, but unfortunately, seems to be a very common occurance.
I feel the jealousy (yes I am not ashamed to admit it), of seeing family days out and trips planned. When I know this will not be happening.
Like you I have seen my child, cry her heart out that she is scared of her illness and of the future.
I have seen the looks when she is trying to walk, or when she is out in her wheelchair, and I have a killer look to give back.
But do you know what, we are not alone, I have made some great friends, who also have children suffering, and the support has been amazing.
We are great parents, we have the most amazing children, and together we can strive for the better days to become more and more frequent.
Until that day arrives, you are doing an amazing job of being an amazing parent to your amazing child.