To the professional treating my child,

My child is living and breathing, and although their life is very different from what we hoped and imagined for our child, it is still valid and worthwhile. You (the professionals) never expected them to live, and I understand that. I understand that my child is complex and that you do not fully understand the condition or how to treat it. Sometimes it is very hard to express how I am feeling and to put my views across in a calm, calculated way, but I wanted to tell you this.

Thank you to the doctors and nurses who have cared for my child, to those who have stayed beyond their shift to make sure that we are OK, who have popped in to visit us from different wards, and who have asked if I was OK and didn’t expect me to answer. To the nurse who always let me use the phone in Intensive Care to order Chinese and who takes the time to eat it with me on her break — you will never know how much I needed that, just someone to listen to me and treat me like a human being. I cannot thank you enough — even on the bad days — because without you, my child would not still be here.

I know that you are medically trained and have x number of years’ experience; however, please recognise that I know my child best. I understand what their different cries and cues mean. I understand when they are in pain and distressed — please listen to me. I do not want you to do unnecessary procedures. I do not ask lots of questions just to be awkward; I want to understand — in fact, I need to understand. I have taken the time to read medical journals around my child's condition and get my hands on every piece of information that I can. I am happy for you to challenge me and dismiss my ideas, provided you explain to me why. We are both experts — you in your field — but I am the expert in my child.

Sometimes I am upset, angry, emotional, sarcastic, or just plain rude — and with the benefit of hindsight, I am sorry for those days. I am sure there are days when you would rather not have to deal with the awkward mother who wants to understand everything about her child's condition and has researched and spoken to other families. Believe me, I would rather not be having to see you as well. Whatever we feel about each other, we need to work together, remain professional, and respect each other’s views. Sometimes I hate how distrustful and sarcastic I sound, even to myself, but please know that even on those days I do appreciate what you are trying to do for my child.

My child is an individual with his own hopes and dreams. Similarly, we as parents have dreams for our child and things that are important for us to be able to achieve. Please recognise that sometimes what you consider irrelevant is a massive deal for us.

We have to live this life. It is not a road we would have chosen to lead, and we know and understand that our child’s life is going to be shorter. It is not OK to use that as a reason not to provide us with the best quality care. To us, he is not a number, and we do not care if the medication is expensive and may not be cost-effective. When you say this, or remind us of the cost of the medication, it makes me feel like you do not value my child’s life.

Please always be honest with me, even if you think that I do not wish to hear it — please at least ask. If I know, I can be prepared. I am lucky to have an amazing support network (thank you, Little Miracles, and all of the other mummies who chat to me in the middle of the night as I sit next to my child’s bed, making sure they are still breathing and adjusting the machinery that makes it possible). This is our normal. Never be scared to tell me. I have been stressed since the day my child was born; whatever the news, I will be less stressed to find out now than I would be further down the road if I discover you have omitted something important about my child. Our normal is another family’s worst-case scenario. The additional stress is not going to tip us over — it is just another battle we need to face.

Don’t try to tell me I am special. I am not. What I am doing is making the best for my child out of this situation. I do not want to hear about religion or how God only gives special children to special people, or that you will only be given what you can cope with. I do not believe you, and frankly it makes me feel awkward on a good day, and on a bad day I want to scream that it’s too much and that no God would choose for a child to suffer like mine has done.

If you do not know, I will respect you more if you say you do not know. We can learn and get extra advice together. I know my child is unique, as is their medical care. Let’s learn and go on this journey together.

Thank you.