Day 27/28

Life is wonderful! We hit double figures today. Proton number 10 complete and he keeps going strong.
His attitude sucks!
Wouldn't yours?
That's what I keep telling myself especially today when he slapped me. Totally NOT acceptable. It's funny though how you react. I immediately wanted to give him a slap back but instead of saying inwardly "do not do that! He is a child" all I could do was stop to work out which part of his body I could slap without causing too much damage!! The moment passed! He got away with it. I cried! Well in fact I sobbed! He sulked! He then apologised.
It is tough to work out what to do when your children are being naughty. On a normal day it is hard enough but when you feel like constant rubbish and your parents drag you about in an attempt to normalise this situation it makes it more difficult.
I want to tell him off for being rude or naughty. I want to take away his privileges for being a prat. But I can't. How can I take anything good away from someone when the majority is bad?
But here is something for you all. Apparently the worst pain, the worst thing that has ever happened to him since this journey began was grazing his toe earlier today. Oh my flipping goodness! You have never in your born days known anything or anyone so dramatic. If he has asked me 100 times if this tiny little scratch will hurt when he goes in the bath then that is not exaggerating! He actually said that this was the worst part ever!! Do rest assured everyone. Don't stress about cancer but worry if you graze your toe!
The other thing that is bothering him right now is having his BCG. Somewhere along the line he has found out that to prevent TB you receive this vaccine. It is two years away and he asks me daily if it will hurt! To the unaffiliated you would think these issues were odd but really what has happened is he has no tolerance to pain. He has gone through so much in such a short time that the thought of being hurt or something hurting is unbearable for Ben. Also to taste anything that isn't fabulous is a no go. He will gag at anything that is not simply delicious. So I no longer cook! These are things that the journals don't tell you and the things that really do affect your child. It is the fear. The ultimate fear of feeling as bad as you have previously felt before. When things seemed unbearable or never ending. Each day he asks me if I think chemo will be as bad next time. I never lie but I tell him that I don't know. That is the truth. I really do not know. Of course I hope and pray it will be better but how can I know? The trust your child puts in you causes pain. You want and need to reassure. You really do try but sometimes you just need someone to give you reassurance. I keep waiting.
His blood results are great today, in fact the best they have been since starting chemo. This is because he has not had Ifosfomide this time. He gets it next week but at least his counts are recovering. Who knows the break may give him the boost he needs to get through next week.
I met new friends today at proton. It was quite jolly in there today. We met a new family who have started treatment today. Their boy is similar in age to Ben. He was nervous today but Ben told him there was nothing to worry about? At least he hadn't scratched his toe!!!
Ben feels good when he has something to offer. I am the same. If you are helping others the focus changes and it makes your situation more bearable. We are hoping to get together with our new friends when we can and maybe have some time together at the beach. It is great to meet people who share the same thing. You are no different in this situation .
It's great to be back in Jacksonville after a hard weekend at Disney. The people, the climate, oh and yes the food is so much better here. I feel like I have come home. I can't imagine what it will be like to actually come home. It will be surreal. There are families here that don't want to leave and a family that we know of who are actually looking to move here. I am sure some of it is the safety and the inclusion. Here your network is families who are going through the same day in and day out struggle. Everyone shares the same common goal. The kids get on with it every day and the parents escort them. We have no choice.
I have altered when it comes to the way I look at my children. I hope this changes as I don't like it. When things are especially bad with Ben I do what I can, of course I do, and then I look for Chloe. I hold her sometimes and just clutch her. She is my well child. She doesn't need me to cry for her or worry for her in the same way. She offers some relief. I feel guilty for this. Maybe it is a coping mechanism. Maybe it is a way of just allowing yourself to appreciate that all is not so bad, who knows.
The moment passes though, usually quite quickly as princess Chloe then realises for that moment she had every bit of my attention and tells me:
"Don't be shy, touch my bum!!"
Oh my flipping goodness.! She never ceases to amaze!
All emotions return to the correct place and life continues.
How do men cope? At home Dean goes out somewhere. So if the going gets tough, he goes to B@Q. Where else would you go? Here though, there is no relent. I get to see the emotion and the rawness of this situation. He copes differently. He gets cross. He huffs and he puffs and then he regains composure. Tonight he did disappear for a while. When he came back he just exclaimed "one of those days". No questions are needed. I know what he means. I know what he thinks and feels. I feel it too. There is no time or space to discuss it though or to love one another through it. You just have to know. To know, that you are doing it together, even if sometimes you feel so far apart. You have no choice. Our lives will restore some degree of normality one day. But we will never recover, not really. That doesn't matter though because as Ben gets well again our lives will take a new and different journey. Life doesn't stay the same forever and you would be foolish to think it did. Life is a huge mountain to climb but there is relent from the up hill struggles. Sometimes I think of it as, we are having our tough time now. It can't possibly be tougher, so then things will improve. We have so much to look forward to and so many things we want to do and see. This is just a small part or our journey of life and one that will make us stronger, allowing us to appreciate more and to just...be.
There are many very selfish and unkind people in this world, in our families, in our networks. If they had what we have now, would it change them for the better? Who knows, but I do think that when you stop and think about what you have, when you think you are really and truly having a bad day, month or year - you are not. There are people close to us that really have it bad. Really and truly. Our lives aren't bad. They are a challenge. Without the challenge we would be bored. Emotionless. Tired.
Tomorrows proton is 3.35. I am hoping to take in a few rays by the pool before we go (told you it isn't all bad!). There are great facilities here and plenty to do in the complex so we will see. I don't plan anymore, not really. I go with the flow out here. Why not?
So mum remains our nanny!! Even she is getting a little frustrated with Chloe on their morning walks. We hear her go from "come on darling to oh shut up!" In the space of 10 seconds. Chloe has developed the northern twang!!
Me- chloe time for lunch
Chloe- shuuttup
Me- Chloe, don't be rude
Chloe/ shuuttup
Oh my flipping goodness!
So we continue onwards. The journey progresses and it will soon be over. But for now we continue ....
From the Carters - goodnight xxx


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