We are all advocates for our children. It is the biggest PR job of our lives. Everyday we are telling other people how great our kids are. When they are being little brats, and they all can be, we will always defend them. We want people to know they are good kids! That they didn’t mean to snatch that toy or push that child, or run off with your iPhone and put it down the toilet … I mean it’s just a phase - right …? Regardless of their little tantrums and their funny little ways they are ours, they are incredible and we defend them, advocate for them, protect and love them. Sometimes, though, we rely heavily on other people to advocate for our children, for example when they are poorly. We let the experts speak for them, unquestionably, because, well, they are the experts and they know. We put our whole faith in them, because as parents most of us are not doctors.
Now, I am not saying that we were let down by our local GP or our local hospital for not recognising that there was anything seriously wrong with the Kawasaki Kid. I am saying that I am pissed off that a disease with such similar symptoms as other childhood illnesses, that is the LEADING cause of acquired heart disease in the UK is practically unheard of.
I ask myself everyday: “How did i not know what was going on? Where were my mothering instincts? Am I faulty? I thought mothers had a special sense to know when their child is poorly. You hear it all the time, mothers refusing to accept doctors opinions and diagnosis. I just accepted it, that it was just a virus. I should have known, I should have seen something. I should have known that this horrible disease was slowly taking a hold of my little boys arteries. ARGHHHHHHHH
I am not a passive person. I am confident. I am strong. I speak up. Why did I not speak up?
I can’t do this. I can’t do this. I have to let it go. Focus on the now Lucy: look at your boy; he’s fire; he has spirit in abundance; he is happy; he is strong; he is defiant. He is amazing.
We were lucky that our local hospital referred us to the Royal Brompton in London where experts had seen this before. How can I feel let down when they did this? They saved his life by referring us to the experts. We thought we were heading into London, after being discharged from our local hospital, for a quick echo to definitely rule out Kawasaki. We had pretty much been assured it was not Kawasaki disease and actually just a nasty virus that he was over the worst of. Instead, we spent four days in intensive care followed by seven days in the hospital’s ward.
I know I said that I don’t feel let down by our GP and local hospital, and I don’t. I really don’t. Apart from this really small part of me that just wishes they had said: “Kawasaki”. If they had, just possibly he wouldn’t have to live with this condition now, for the rest of his life. I wouldn’t start my day with apprehension and fear. If Kawasaki is treated within the first 5-10 days, it is a treatable disease with no lasting damage. If it is left beyond the 10 days or misdiagnosed it can devastate a child’s arteries leaving them at risk of heart attacks.
Stanley’s case was confusing to our local hospital. They thought he had meningitis, and he was treated with antibiotics. He was starting to improve and his temperature did not spike. One doctor kept mentioning Kawasaki to us, but because his temperature didn’t spike they decided not to treat him with IGIV, the drug that could have saved his little arteries.
How can we advocate for our children when most of the medical profession are often unable to recognise the signs of Kawasaki disease? We are now around some of the best doctors and professors in the world. In the words of the Kawasaki Kid’s Professor: “Lucy, it is time to become the expert’.
I have to be the expert because I have to protect him. I have to advocate for him. If Stanley becomes poorly, it is very likely that the paramedics will have never heard of Kawasaki and we may arrive at a local hospital where the consultants will have never seen a case. I need to get him to where the experts are. I have to speak up. I have to be loud, and shout, for his life depends on it. I have to be the expert.
What I do most evenings these days is research: watch videos; read papers; read new findings; talk to other families who have been affected by Kawasaki. I can not let it go. I find it so difficult to just sit back and accept our fate. We have to know more. There have to be some answers. I have to help find out how and why this happened and more importantly what may happen next. I want to raise awareness and money for new research that will help other children. I think about it in every restless moment, as soon as my mind wanders this is where it rests. Turning and turning over and over, with ideas, with plans, with questions.
This is in stark contrast to what I usually spend my evenings doing … which is usually waiting for Andrew (‘Ange’) to get through the door so I can get out and get to the gym or go running. My jeans are getting a little tighter, but my mind is getting a little smarter. My heart is still heavy - that will not change. I have been changed forever, and this may sound sad, but part of me wants to feel the pain and fear: I don’t want to take a single second for granted. We are currently on holiday and I am looking at my son playing with his brother and his cousin, and I just try to enjoy the moment. I have to learn to live for the day because we don’t know what tomorrow brings. None of us do. I didn’t before all of this but it just feels so much more relevant, and it feels so much more like I have to live this way. It isn’t an easy thing to do. People say it all the time: “Live for the moment, for you don’t know what tomorrow brings” but this has to be how I live my life from now on. I can’t un-see, I can’t un-feel.
I’m ready for you. I am the expert: ask me your questions.