A Day In The Life

Part of the 30 day challenge

It’s getting light outside so I am not fully asleep when the TV comes on and I am subjected to Piers Morgan’s voice ranting about something highly uninteresting.  It’s 6.05am and time to start my day.  I get up early in the hope of having a shower and being able to dry my hair before William wakes up.  I spend the 5 minutes of phone free peace in the shower thinking about all the things I need to do today. Emails I’ve not replied to yet, appointments I haven’t rescheduled and make a mental reminder to order Williams medicines before we run out, I’ve already forgotten three days in a row.  Plus I want to write some blog posts, send some emails about changing places toilets and I need to advertise my cake classes.

Shower time over, the race is on to get my face on and dry my hair before William surfaces and demands his breakfast.  This morning I just about manage to dry my hair but my face is another matter!

William has slept all night so I can’t complain when he stirs at 6.30am. He wakes up with a huge smile on his face and stretches his little arms and legs out. That’s my favourite part of the day, the only time when he seems to have complete control of his limbs, just for a second before he is fully awake.

William asleep with his toys

I spend a couple of minutes doing his stretching routine before Kev (Williams Dad) comes in to get him out of bed.  He lifts him onto the changing mat and gets him ready to sit on the toilet while I go and make his breakfast.  Chocolate Ready Brek this morning, William’s favourite, it’s quick to make and the texture is easy for him to eat.

Just as the microwave pings, William is making a lot of noise to tell us he wants to get off the toilet.  Kev lifts him and puts a clean nappy on him ready for breakfast.  It’s 7am and I settle down on the sofa ready for William to sit next to me when Kev carries him through.

Breakfast on the sofa is something we’ve done since William was a baby, and something I know we will have to stop soon when he’s too big but until then it’s our special bonding time.  William eats his breakfast slowly but well.  Only coughing a few mouthfuls on the floor today, which the dog quickly comes and licks up, my clean jeans have splatters of chocolate on them though, so they’ll have to be washed again.

7.30am and William is enjoying the last few mouthfuls of his breakfast and my arms are aching from supporting him and feeding him.  He can’t feed himself as he doesn’t have any control over his arms so any food he eats is provided by a supporting adult.

Time for another trip to the toilet before school.  I lift him from the sofa and into his chair so I can wheel him through to the bathroom.  We don’t have a ceiling hoist in the lounge yet and our mobile hoist doesn’t work with the sofa so I have to lift all 22kg of him myself.  Not ideal for him or me.  And not something I’ll be able to do for much longer.  But a hoist will add an extra few minutes to everything so our routine will have to change again.

Back in the bathroom and time for William to sit back on the toilet before school.  While he’s there I quickly wash his face and brush his teeth, conscious of the fact that he is likely to gag and throw up on me if he starts to swallow the tooth paste.  Luckily today he doesn’t, but yesterday was a different story.

It’s now almost 8am and the school bus is due in 15 minutes so it’s a mad rush to get dressed, have medicines, write in his diary and get him settled in his wheelchair.  Luckily, I measured out his medicines last night as I know our mornings are a rush.

Williams medicines

We are lucky that William only has 3 medicines twice a day. Many of his friends have far more.

The school bus comes and William goes to school.  I’ve now got twenty minutes to get myself ready before I need to leave the house as William has an appointment at school today.  I’ve not had breakfast or anything to drink yet but that will have to wait as I need to put the washing on and do the dishes before I go out.

A mad rush but I’m out of the house in time and spend the next hour in traffic trying to get to Chailey for Williams appointment.  I didn’t have time for a cup of tea and I can feel a headache brewing already as I’m dehydrated but I haven’t got time to stop and grab a drink on the way.

Lunch time and the (very long) appointment is over and I am on my way home, still haven’t had any breakfast but I did get a cup of rather disgusting tea.  My headache is raging and driving home isn’t helping but I can’t stop, I need to get back to do some work and walk the dog.

The house is a tip, always is after a weekend, so I quickly rush around and tidy and hoover before remembering it’s now gone 2 and I’ve not eaten anything yet.  I grab a cereal bar and can of diet coke to take with me while I walk the dog around the park. My headache is still banging so I dose up on paracetamol and hope for the best.

When I get back from the walk I feel refreshed but tired and realise I now have about an hour and a half to get some jobs done before William gets home.  I start by replying to the emails I keep forgetting about, one from physio about another appointment we need to arrange and others about equipment.

I spend half an hour on advertising my cake classes as I need to pay the bills and this is my only source of income.  I should have done this last week but I’ve just not had the time, I must make my job my priority.  I get a few enquiries straight away and respond to them immediately as I know I might not get back to them otherwise.

All that took much longer than it should have and I’ve now only got about ten minutes before Williams school bus arrives so I quickly look in the fridge to see what I can muster up for dinner.  There’s not much in the fridge so Kev won’t be happy, I must go food shopping tomorrow.

The bus arrives and William looks happy to be home.  We come in and get him out of his chair and back onto the toilet while I puree his dinner.  He can only eat puree so every meal has to be the same consistency, I’ve lost track of how many hand blenders we’ve worn through.

William starts kicking off while I’m preparing his dinner so I stop to go and get him off the toilet and put his pyjamas on.  He’s had fun today so he’s kicking his little legs like crazy as I try and get his trousers on, which isn’t easy!  I throw his dirty washing in the basket and am immediately reminded that there’s a load of washing in the machine that needs to be hung out to dry.  That’ll have to wait for a little while.

We go back into the lounge and onto the sofa for his dinner.  I could feed him in his chair but I know he will eat far quicker on the sofa and I still have loads to do, including cooking my tea! We watch some TV while he eat, most of his food ends up on his face!

Forty minutes later and William’s finally finished so it’s time to hang the washing out and put the dinner on while William sits in his chair watching the weather forecast which, for some unknown reason, always makes him smile.

He manages about 8 minutes in his chair before he starts crying, we presume he is uncomfortable but as he can’t tell us we just have to guess.  He sits on Kev’s lap for a while which cheers him up but dinner is a disaster, as usual.  I am probably the worst housewife ever and promise yet again to try harder tomorrow!

I leave the dirty dishes on the side while I go and measure out Williams medicines for this evening and tomorrow morning and realise yet again I have forgotten to order his repeat prescription.  One of the bottles is almost empty and my GP take 5 days to do a prescription.  I set an alarm on my phone so I remember to call the pharmacy first thing in the morning (my GP don’t allow telephone orders but my pharmacy is amazing and does!)

William sits on Kev’s lap while we give him his medicines before he takes him off for one more go on the toilet before bedtime.

It’s now 7.30pm and we have half an hour to relax together and read a bedtime story before William goes to bed at 8pm.  He loves his books so he sits perfectly still with me on the sofa looking at the pictures and laughing at me when I make funny noises for the characters.  His eyes are getting heavier so Kev carries him through to his bedroom and we position him nice and straight and tuck him in.  I put his stories on his iPod and we turn off the lights.

It’s only 8pm but my headache is still raging from this morning so all I want to do is fall into my bed but I still haven’t cleaned up from the (disastrous) dinner!

Today has been a good day, no sick to clean up.  No poonamis to deal with and I even managed to do the washing (which is now sitting dry, but creased in the tumble dryer).  I didn’t get around to any campaigning for changing places though, that will have to wait for another day.

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