I had a plan to write plenty this week as I had lots to talk about.
I wanted to tell you about going to visit my Niece as she was having chemo in hospital and how hard it was to be walking back into a children's hospital and specifically and Oncology ward. I wanted to tell you how difficult it was just actually walking into the hospital. How I nearly turned back and how much of a highly stressful situation it was. I wanted you to know how I felt, I wanted to tell you all of the crazy thoughts I had running through my head and the extra strong demons I had running through my mind on the way out.
I wanted to tell you about my gorgeous Niece cutting her hair off ahead of it falling out and how much her Mum was worried about it. I wanted you to know how well she dealt with it and how it was exactly as I expected. I wanted to follow up with the message how we presume these kids act in a certain way but they don't because they are children. What we think is important to them is not what is important to them. We presume they will act in a way because, as adults, we assume they will act the same as an adult would. They don't. They are children. All they need is support and love. The big things you assume will be a battle are not. Hair falling out is fine to them, it'll grow back. Serious stuff to them is tape removal from bandages, keeping clean, getting a bath while their port is accessed, teeth cleaning and going to the bathroom. All the things presume are simple.
I wanted to tell you all about our clash with Hurricane Irma last year. How we had no power and were stranded surrounded by water. I wanted to tell you how sick Hannah was and how stressful it was. I wanted to tell you the funny story about the rescue and evacuation and how we coped with it all with our new friends. Escaping through four foot of water in a pick up truck full of kids with no hair, all laughing and joking.
I then wanted to tell you about the beautiful funeral we attended this week of a little girl we met in Jacksonville. I wanted to tell you all about how incredible her Mum was and how difficult it was for us to watch all of this unfold. I think we cried more on Monday than we did during Hannah's funeral. The Mum had a real calmness about her and lead as an example for everyone else and we did the same thing with Hannah's funeral. It's all very strange. She read out a poem and we watched her look of pride as a selection of photographs were played. It's all so very humbling.
Then Nora happened. Honestly, if it's not one thing its Nora. We had to rush back from the funeral in Bristol as Kate's parents had to take Nora to the Accident and Emergency department with breathing trouble. She's had this before - often it happens when she is lacking sleep, is exposed to new conditions, her diet changes and, especially as we are back in the UK, when the temperature changes. Normally she has a nebulizer and sleeps and it settles down but this time it didn't settle. We got back at about 10pm and rushed in to see her. She was much more quiet than normal and clearly needed to be there. They thought she had an infection and so treated for that and wanted to admit her to the high dependency ward.
The consultant came in to talk to us and asked for her history etc but she could tell that something else was going on. Eventually I told her about Hannah and how difficult it was just seeing Nora in a hospital bed with an oxygen mask and how terrified we were at staying on a ward with her. She understood straight away and the hospital were lovely with us. They allowed us both to stay when normal policy is one. Nora is fine now, it took a day or so for her to be jumping up and down on the bed and swinging on the curtains. It was a little scary for a while but thinking back on it, a chest infection is a walk in the park to be honest.
I'm not sure what the point of all this is. Maybe to tell you how crazy life is. Maybe its to tell you how its so difficult to do something the first time again. How it's scary and how it takes courage to do it but once you've done it, then I guess it becomes a little easier.
I also realized this week we are a long way from whatever 'better' is. We are still incredibly raw. It may seem seem we are doing well day to day but the wound is still very much open and its a long way from becoming whatever scar it is going to end up. We have had to face a lot of demons this week and look past memories in the eye and deal with that. I think we have done okay but its not been easy. This week has been particularly exhausting physically and especially mentally.
We are heading away for the weekend with close friends and that's probably going to be the best medicine we could be prescribed. The details for all those things I wanted to tell you about will have to wait a little while.
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