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The Realities of ‘Back to School’ in a Chronic Illness House

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New school year, new uniform, new adventures.

It’s the day before school starts back, this year one of my children, Charlie, will be attending a brand new high school, not just new to him but to our family as we decided not to opt for the school that our older son is currently on roll at.  He is full of nervous anticipation lays out his new uniform for the first time and packs up his bag.  For him it will mean new routines and new friendships as none of his old school friends will be going to this school with him.

Rubie, our youngest will head into year 4.  Old friends, old routines but lots of new staff to get to know and to get to know her.

Our other son will continue to be educated at home taking minimal subjects for GCSE while he tries to manage his symptoms.  Alfie doesn’t start lessons till next week.

I’m positive.

Day one

Day one starts well, we are super organised and I’m up cooking everyone pancakes before we head out of the door.  As a treat today Charlie will be chauffeured to his new school by dad.

Rubie is up and ready, talking on face time to her friends and planning how they will all style their hair on their first day back.

Alfie stays sleeping.

I spend that day at Charring Cross Hospital trying to persuade a migraine specialist to agree to my rheumatologist manipulating my hormones to stop me dislocating so much around the time of the month.  He won’t because my migraines have aura 🙁

I’m home just in time to collect my tired and happy Children from school and ferry them to Choi Kwang Do.  By the time we all get home and I cook everyone a quick dinner I am in so much pain in my feet I could sob.  When Dave gets home and I’ve cooked for a second time I can’t stand anymore.  He asks me to simply pass him something from the kitchen – you’d have thought he had asked me to climb a mountain right there are then because to get up and walk across the living room was an impossible task.  I apologise for biting his head off and explain.

I’m hurting.

Day two

Thankfully when I wake the pain is nowhere near as bad as the evening before. Charlie had a great day yesterday and is fired up for the new adventures that await him (and his first journey on the bus).

For my daughter the honeymoon period is clearly over and she wakes in pain, with a headache and nauseous.  Already the new office staff know me by name as I am in and out relaying messages to her new class teacher and medical lady before school.  I know I need to get her Individual Health Care Plan (IHCP)updated, so I make a note to print it and make any changes needed, in the meantime i need to check the teacher has all the up to date information and management plan.  I plan to collect her before lunch so that she can rest this afternoon before I take her and her big brother to their wheelchair assessments and hope that she makes it till 12pm.

Alfie’s assistant headteacher has replied to my email and I have a telephone meeting with her at 10am to discuss his plan for year 10, they agree to everything, it’s amazing the difference an EHCP can make and a pot of money 😉

My daughter comes home half day and before lunch today and rests for a couple of hours.  We make to wheelchair assessment and she thinks that she will manage swimming, she hasn’t been consistently and it is essential to keep her strong, so we head out of the door.

I’m on a mission.

Day three

Day three starts well my daughter is more rested and looking forward to swimming with the school today.  I’m now worried that I haven’t spoken to the her teacher about how to manage swimming and she will be left treading water till she’s virtually unable to walk.  So I quickly dart into the office again to relay new messages, this time about swimming.  Thankfully they are meeting me after school today.

I meet my friends in Costa (our usually Friday morning get together) and realise that I haven’t received the email about going to church.  My daughter doesn’t walk to church, she uses her wheelchair, without it she will certainly not do much else today let alone swimming.  So I leave my drink and head back to school as quick as I can with the wheelchair.  Just making it.

Alfie crashes today because he left the house for the wheelchair appointment yesterday.

I pop into school at the end of the day with a power point presentation for staff and amended IHCP.  We whizz through everything but I am always much happier once we have met face to face and discussed everything.  Her physio will be going in to school next week to go over any exercises as she has a new TA.

I’m thankful it’s Friday.

Day four

It’s the weekend – thank God.  The little two get ready for their dance class and while they dance I catch up with my sister-in law and a friend.  I actually look forward to my Saturday mornings.  I’m due out tonight for another friends birthday but I knackered and leave it till the very last-minute to get ready after spending the whole day doing paperwork.  My body just wants to curl up on the sofa under a duvet and sleep.  I rally myself and get ready and we have a good night.

I’m  glad I made the effort.

Day five

I’m even more tired after a late night but so pleased I made the effort to go as I haven’t laughed so much with the girls for ages.  Laughter is most definitely the best medicine.  Then it’s H.W., uniforms and a little sleep before we head out again tonight for our best friends daughters 18th.  Our eldest decides not to come as it will be noisy in the restaurant and he starts back at his online lessons tomorrow.  He knows that making it past the starter course would be a big ask and the repercussions could last a week.  I’m gutted that he has to miss out on stuff like this but so proud of him, he is sensible enough to make good decisions about pacing but at the same time understands that it is something the rest of us wouldn’t miss.  He is amazing.

I count my blessings.  

Day six

Back to it.  The first day of Alfie’s online lessons and no lessons are loaded on the system.  So I act as a go between for the online school and the school that still holds him on roll and has to give the green light to the online provider.  In the middle of which I have a telephone consultation with my cardiology nurse to review a drug trial, at least it has saved me travelling all the way to Kings.  I make several calls and emails until the time comes and goes for his lessons for the day and I have to leave for another hospital appointment. The first day of the school term already seems like a very long time ago.  Today my appointment is at RNOH Stanmore to get the results of x-rays and MRI’s in the hope that they will put off surgery for now and consider cortisone injections.  Thankfully my feet are suitably arthritic so they do.

Rubie goes off to Brownies for the first time.  She has a great night but I can see she is really tired and teary when I pick her up.  I spoke to the Brownie leader a little about Rubie,  I think she was surprised when I asked if it would just be easier to send her a link to a power point presentation I have on Rubie that I take into school every year for new staff.  None of her brownies had ever come with a power point before! but it saves us all time at the end of a session and will let then digest everything at their own pace and come back to me with questions before next week.

By bed time I have an email from my son’s school with a timetable and when I log on and the lessons are loaded for the next day.  No explanation or apology.  I now have to install to new operating system to support the online classes before he can log on to a live lesson as everything has been updated and changed over the summer.

Is it only Monday? 

Day seven

No clubs, no appointments, no children only at school half day 🙂

I like today… it gives me a day to get my son up and ready for his online lessons and check that all the new systems are up and running.  We have the time to look over the new syllabus and catch up on the lessons that he missed yesterday.  It also gives me the chance to crack on with paperwork without stopping and starting every 5 minutes.  Just when I think that the day is too good to be true I get a call from the opticians to collect my daughters glasses.  Heading straight home after the school run just isn’t going to happen… there is always next week?!?

I receive a lovely email from Rubies Brown Owl in response to the power point that I sent her yesterday.  It just makes my heart melt, she has obviously read and digested everything that was included even though it was really meant for school.  They are so accommodating.

Alfie’s lessons go well and everything works.  He says it’s really easy at the moment but that is a good thing as he struggled to concentrate in both lessons towards the end.  By 4pm he’s had it and a rest turns into a two-hour nap before dinner and I pray this isn’t the start of things to come now we have added learning back into the mix.  Tomorrow is another day.

When is half term? 

How has the first week back to school gone in your house?  Do you have any tips to survive this time of year?

If you liked reading about the day to day of our family check out these posts…

Childhood Pain 

The Reality of Fatigue

The Dance Show

If the return to school has been a similar rollercoaster these articles my be of help…

Why is School So Stressful

The Politics of Labels

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