So I explained to him as best I could that if he wants that one out he will still have to have one back in but it will be smaller. He opted for that and today we went in and got the smaller one put in. He's still pretty miserable about having it in but not near as upset about it as yesterday.
So now we are on our way home but he has fallen asleep in the car so I thought I'd pull up under some shade and write in this blog.
He was really keen to come home after the insertion so we didn't hang around afterwards even though I wanted to go back upstairs and visit a very dear friend I've met through all this mess. I've mentioned her before and her son also has ATRT and is currently in Hospital. We popped up to see her and her beautiful boy before Jayden's appointment and stayed for a short while. I stood in the room talking to her and watching her with her gorgeous little man and I thought to myself how even though our sons have the same condition I could never say to her that I know how she feels, because I don't. only she knows that. I wanted to tell her I feel her pain but I couldn't say that either because I don't know what it's like for her. I do however 'get' how painful it is, how gut wrenching it is, how incredibly sad and difficult it is but I would never know how it is for her personally and wouldn't say I did. It was at that point that I truly realised how very lonely this road is. That although you can surround yourself with people who can understand in some way they will never know how you are feeling inside. And that part is difficult because the pain you feel is so enormous and overwhelming, significant and lived 24hours that its hard to imagine you have to keep it to yourself. You can't share it, spread it out, it yours and yours alone.
I wanted so much to take some of it from her and lock it away in a box so she could breath for a while but I can't. I felt so helpless and now know how my family and friends feel when they visited Jayden in hospital. I also know how for them it would almost not seem real because its not happening to them and when they would leave the hospital room and hospital their lives would just continue on where as mine and Jayden's would continue in that hospital room as does this beautiful lady and her son.
It scared me seeing them today and every time I see them because its a reminder of our possible future. I know with every inch of my sole I do not want to be sitting by my child's bed holding his hand through all the shit they have to go through again and I'm so very frighten of that.
She's an amazing lady but I know really at the end of the day she's a MUM and mums will do anything for their children. There's nothing unusual or super human about that. We just do it. We don't sit there thinking will we or won't we, we just do.
I know I wouldn't say "I don't know how she does it?" because I know the answer. She does it because she has to, there is no choice.
We are home now and Jayden has had his medications through his NG and is now watching a movie. It's hot outside but cool in. I have so much to do but I don't want to leave his side so I'm watching one of his favourite movies for the umpteenth time with him. Im thinking about My friend in hospital and I wish she was also home with her little man watching a video on their couch and not in the hospital room.
Below is a photo taken today with his new NG tube and as always, coping with it well.
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