Feeling like a swan at the moment – looking ok on top of the water but frantically paddling away underneath, trying to keep moving forward. Im still processing the fact that Lennon’s colon has failed and trying to keep him going until GOS decide what to do with him, and then we get a letter from the neurologist diagnosing Autism, dystonia and choreoathetosis. Oh and she wants him to have a lumbar puncture to check for neurotransmitters 😔
Jeez, does this boy not have enough going on?! My brain feels fried.
I’m physically and emotionally drained. I honestly feel like I am responsible for keeping my son alive, and that’s a huge responsibility. I can’t just ‘clock off’ because I’m not coping and struggling. Usually when I feel like this I change something to improve the situation. But this is out of my hands, I can’t change anything. I am providing such a high level of care at the moment – yes he should really be in hospital, but that’s not practical or what’s best for him. We have 2 other children who need their mummy at home, not to mention that being in hospital is a logistical nightmare and requires a lot of help from a lot of other people. Whilst I’m sat in small hospital room still providing 24 hour care for my son because I’m the only one who knows how. I can’t even leave him to go to the toilet!
Lennon needs to be at home and going to school, he needs to have a some quality of life. He needs his family around him and for life to remain as normal as possible for as long as possible. He has no idea of what is going on his little body. He has no idea that his colon has failed and the implications of that – I’m not sure if that’s a good thing or a bad thing??
I will keep swimming, like I have for the last 10 years, because there is no alternative.