After reading Albert’s story I sit here with tears rolling down my cheek knowing a mum like Jane knows exactly the gut wrenching fear we hold all of the time.
Even on good days you know you’re waiting for worse to come, through hidden smiles and confidence you just carry on and live day by day.
Start of heat wave leaves Jack tired and pale should have named him Casper LOL, there’s that light heartedness – I have to see a laugh in things or I would be crying every day. He gets admitted to a local hospital, who don’t know what they are dealing with as usual, so yet again I am in the horrible position of having to tell them what to do, the usual comments; he’s very complex and again you go through the history like it’s Groundhog Day AGAIN AND AGAIN.
It frightens me to think where Jack would be without me by his side as no one ever seems to know how to help him without me continuously fighting his corner. I am his voice and he looks at me lying on the hospital bed with his beautiful eyes full of fear and pain. Again, hold the tears, no time to cry or be mad as to why this keeps happening to him. Sometimes I’m gripped with such anger that this beautiful child has to suffer like this. Finally the pain subsides a bit and he goes to sleep.
In for a few days on Intravenous Antibiotics and then finally home again. He recovers well and returns to school – his happy place – a chance for some normality. I feel warm and contented inside but know I am always waiting for the next time. He’s handling the weather well considering his on Total Parental Nutrition – there is no way of getting any extra fluid into him. I have to keep him cool all the time and only allow him outside for a while. Jack loves gardening and I have a fan attached to his wheelchair to help keep him cool and comfortable. He hates the heat and gets tired extremely quickly in the summer.
Jack’s days are very short. He is in bed and asleep most nights by 5 o’clock as the Summer heat is knocking him out, but at least he’s home with me where he belongs. Another couple of weeks pass, this is great, finally some stability seems to be coming his way. Not for long, more signs again there is something wrong, he’s getting very violent and agitated, now I’m waiting for another episode to grip and so it does. Luckily though I can manage at home with his pain medication, but not all parents are allowed to do this – with help from his palliative pain team and we just let him rest, even moving him causes him to cry in pain. He still laughs and smiles through it though and is now out and about again.
You can see the effects each episode has left. He cannot move now, completely reliant on me to lift him from place to place and in pain on movement and his upper body is now weakening so awaiting a supportive wheelchair to help keep him upright as struggles to hold his body and head up for long periods. The episodes of bowel, stomach and bladder pain leave their mark each time.