So yesterday Lennon received another chest tube because he has fluid everywhere (again). Today they did a biopsy – though they are not suspecting a rejection issue – they are hoping/thinking that they can find some answers to Lennon’s situation. They also did a CT Scan as an ultrasound (again) would have not been beneficial and the scan may (or may not) give them some answers.

For the Scan and the biopsy Lennon was put back on the breathing tube – and we were told they wouldn’t take it until tomorrow. Do they not remembe the last time, or the time before that? It worries me beyond belief. It worries me that they are worried and they don’t know or understand of what is going on. So here is to hoping for answers…

…part of me is scared to know what is going on, but of me feels like where we were several years ago when we didn’t have a diagnosis…it brings back certain memories I do not wish to think about. It makes me angry to think that he has to go through so much just to be alive. Oh, the things we take for granted.

I realized that I in some instances am numb. Four months ago a chest tube was a big (I mean BIG) deal for me, yesterday was like ..oh ok.. moving on now. But I lost it later on that day. Crying is a healing emotion, anger is a motivational emotion (from a wise woman).

I went home and made soap before going back to the hospital because for just one minute I needed to focus on something else. For one minute I didn’t want to think about all the possibilities. For one minute I didn’t want to think at all, let alone feel any emotions.

I have said it before and will say it again, I don’t ache for myself but I certainly hurt for him. I miss Lennon, I miss him a lot and the transplant has changed him. But I feel his pain, I can see it in his face, the uncomfortness of whatever it is that is going on. Even when the ammonia spiked – I never has seen this in him. There are all these emotions – sometimes easy to understand and sometimes complicated to explain. He is however my inspiration to keep going…

The nurses often tell me how much that little boy loves me… he says my name in his sleep..he says my name when his mental state is altered (when high with ammonia in the system or due to medications). He says my name to let me know he really needs me – to hold him – to stroke his head – to tell him I love him. He says my name to make sure I didn’t leave him – that I am forever present to help him have his needs met – whatever they may be.

Of course this too leaves me in agony – I have other children while older and perhaps less needy – still, need me. Often feeling that I am abandoning them as my time is spent at the hospital or work, rarely at home. I often feel that I need to find that pot’o’gold that allows me to divide my time between them all (i.e. not work). But it isn’t an option.

My kids understand this – my kids are great. They keep the house running – do their homework – feed the animals and don’t set the house on fire or anything else. They are mini-adults. They too are my strength and inspiration. They often do not get talked about – but they too have some much insight and so much to share – and so much understanding beyond their years.

This post has gone on longer than I intended but that happens. All I can say right now is that I am overwhelmed with mounds of emotions that I haven’t quite figured out how or where to place. I feel more drained this days than I have in a while, so I will end this with saying good night and thanks for all your prayers and thoughts as Lennon continues his battle of recovery.

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