Juggling lessons needed
I’ve had two days of trying to leave the house to participate in normal life but somehow have been foxed at every turn. On her first day back yesterday Belle tripped up running for her school bus and then fainted by the side of the road because she’d scraped a load of skin off her elbows and knees – there’s always some drama in this household – we peeled her off the pavement, waved the driver on, cleaned her up and eventually got her to school.
Today, after contending with a Calvin meltdown about aspirating him for his tube feed (no , no, no, please don’t choose the day when I’m on my own) because he said the tube was scratching his throat, it was my fault and I didn’t understand and he HATED me. SIGH. Then Taz decided it was his turn and refused to brush his teeth and was threatened that all his toys would be going in the bin, one by one, until he complied. It’s hardly surprising I barely made it out of the house.
The normal mayhem for the morning routine is made worse tenfold because off the colostomy bag change, the medicines, the asthma inhaler, making up two feeds for Calvin and packing all his medical kit for the teachers. Walking to school with the boys was further delayed by Taz’s refusal to get on his bike until I had wiped all the dew of his seat and the handlebars, then he decided he wanted to swap to the tricycle, at which point I was already half way up the path refusing to give in to his demands. In about two years time I think he may be a more reasonable individual.
I was trying to get to the gym to prevent my wobbly backside from expanding when the phone just kept on ringing and ringing, mostly trying to square the circle about a school issue for Calvin that I knew was on the horizon and that I’m slap bang in the middle of trying to resolve. It’s made me so , just, Grrrrrrrrrr, I can’t even write about it yet. I’m in the middle of finding a specialist psychologist for Calvin who can see him privately, then I had a long conversation with his psychiatrist who told me to stop being so hard on myself, that I’m just doing my best and that Yes, Calvin’s going to keep being angry and blaming me until he starts to feel a lot better and no, she didn’t think I’d lost the plot. Kind, deluded lady. I never got to talk to Hospital Education, or to the insurers to persuade them to pay for this latest referral. I’ve still got to set up training for the new member of staff to deal with Calvin’s medical needs, I haven’t yet talked to the pharmacy about the latest prescriptions, I still have to reassure a swimming teacher he’ll be just fine with a tube and a bag, I’ve got to organise bloods for the research team at Great Ormond Street, the personal care plan for school is making my eyes swim and at some point I have to apply for a Disability Living Allowance which keeps being moved to the top of every new TO DO list. G&T anyone?
This afternoon the community nurse arrived to insert yet another NG tube through Calvin’s nose into his stomach. After spending three days cursing the tube attachments and using pliers to detach the little blighters, I’d decided enough was enough. When Lou arrived I called up the stairs to Calvin. He replied faintly, “Cavlin’s not in. Please leave a message and try again later. Beeeep. ”
We found him under the bed. After twenty minutes of coaxing he eventually emerged. After another twenty minutes he swallowed the tube down. Three minutes later I was again trying to leave the house only to be stopped in my tracks, “Emergency. Emergency. Mummy are you still here?” – yup, you guessed it, green poo all over his hands and his school uniform as the bag had gone U/S. The joys of colostomy bags.
The icing on the cake was being kept awake by Taz for three hours in the small hours demanding milk, monkeys, puffin, the district council magazine he’d taken a shine to, the small light needing to be on then off and lying sprawled across me. I wearily returned him to his own bed many, many times, whilst contemplating sleeping on the bathroom floor with the door locked.
It’s so New York, Dahhhling, to be trotting off to a counsellor so at least I’ve joined the rest of the human race who explode and explore their feelings when life throws you around. On good days I like to think of myself as a delicate pair of my favourite silk knickers, on bad days I resemble parachute pants, either way this week I have been sloshed around inside a washing machine. The one good thing about being therapised (made up word ALERT) is trying to just accept the dunking . Blowing in the wind, being warmed by the sun – nah. If I’m really lucky I’ll shrink from stress …..ENOUGH with the pants analogy. My conclusion; all this is our normal, which I think is fine. Just about.
NB for those new to my blog:
Calvin = my quirky nine year old son, named after the quite brilliant Calvin and Hobbes cartoon strips
Belle = my peachy, long suffering twelve year old daughter
Taz – my manic three year old, aptly named after the cartoon Taz or Tasmanian Devil
- Courage is resistance to fear, mastery of fear, not absence of fear – Mark Twain (afeedersdigest.wordpress.com)
- Small boy causes nuclear meltdown (afeedersdigest.wordpress.com)
- A ‘Calvin and Hobbes’ reflection (mirrorsfortheworld.com)
- Calvin: the unexpected gifted kid (waitingforheaven.wordpress.com)
Posted on September 6, 2013, in Emotional rollercoaster, Uncategorized and tagged allergies, Bowel disease, bowel inflammation, childhood inflammatory bowel disease, children with bowel diseases, colostomy, colostomy bags, Education, elemental diet, elemental diet for children, elemental feeds, Eosinophilic Colitis, Eosinophilic disease, Eosinophilic Disorders, Great Ormond Street Hospital, Health, leaking colostomy, nasal gastric tube, NG tube, paediatric psychiatrist. Bookmark the permalink. 2 Comments.