The Kawasaki Kid

Being ok with not being ok

Being ok with not being ok

“Are you ok …”? No, I am not ok, but I am ok with not being ok”.

We’ve had a rough ride recently and, naturally, I am asked if I am ok. My reply is always the same: “Yes, I am ok”.

Truthfully though, I am not ok. But I think I am ok with not feeling ok. Does that make sense? It feels like it does in my head. I won’t start crying in your face though so don’t panic, I won’t make you feel uncomfortable, I promise. But I do want to feel like this for a while. I want to feel frightened and scared and I want to be able to say: “No, I am not ok”. In not being ok I can still function, I can still work, I can still muck about and be happy and smile and act as I always have. I can do all this while not being ok.

I am still not quite sure how I feel about everything and I am working it all out. I lay awake most nights and what I think about isn’t the scary nightmare of the 10 days we were in hospital, terrified we were going to lose our boy. Instead, I think about the future and the image of what I had mapped out for us. That is it, that is what is making me not ok. I need to let go of and say goodbye to the future projections I had placed on our family and on our boys …

As parents, I think we all make memories for our families - for our children - before they have even happened. We decide what our future is going to look like. And, when that isn’t going to happen, I suppose we need to grieve that. A friend of mine said to me recently: “Lucy, you are allowed to grieve the projections of your future for your family”, and i needed to hear this. For anyone reading this that does not know us as a family, we love running, skiing and well pretty much all sports and forms of exercise. We had already decided that our boys will love sport, that they will be runners and in a few years I imagined myself standing on the side of a football pitch, on a Sunday morning screaming and cheering at my boys to score a goal. Who says that they will want to play football? Be a runner? Enjoy rugby? Or want to ski? These are things that Stanley has been told by doctors he will not be able to do as he grows older, but having these preconceived ideas of his future, not mine, is just as bad as me saying that boys will play with trains, tractors and cars and girls will play with barbie, dolls and love Frozen. (Thank god we don’t have to watch Frozen). We don’t know what they will want to do, and for us I know I just need to let that go, I need to stop putting my boys in the box I created in my mind for them. I am allowed to worry about the future, about what the universe has in store for the Kawasaki Kid and his brother. But regardless of his condition they will find their way, they will find their path and they have greatness in it. 

The Kawasaki Kid is a little boy, that contracted a rare and relatively unknown disease called Kawasaki disease. If left untreated or misdiagnosed it can have devastating affects and life long cardiac problems. The Kawasaki Kid lives with two giant anuerysms in his coronary artery. He has injections twice a day and oral medication to prevent clotting which we are told he will need for the rest of his life. I am his mother trying to come to terms with our new normal and raise awareness of this horrible disease that is the leading cause of acquired heart disease in the UK but is practically unheard of.  Please follow our journey.

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