Dear Doctor

Dear Medical Professional, You will ask about his medical history, And I will repeat the story I have told 100 times or more, The details fine tuned to the essentials I know you need: He was born full term, He has a 7 year old brother who is fit and well, He is allergic to penicillin.  You will ask me what happened, And I will answer: He is 6 years old. He wasn't breathing for 7 minutes. I gave him mouth to mouth. I will hand over a careful typed piece of A4 paper. It will tell you his hospital number, The things he is allergic to, A list of medications and doses. You will take it and smile. You'll tell me I make your job easier. I will stand calm, And in control.  You see my demeanour, my hospital bags packed and ready, And you say, You've done this before. I'll nod and say many times. But remember this; That 6 year old is my baby. That boy with the oxygen, And the wires, And the tubes, Is my son. I watched him turn bl

Those who can, do ...

My name’s Emma and I’m a teacher.
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There, I said it, like a confession at a meeting for alcoholics anonymous. 

Except it’s not true, not really, not any more.  You see, I was a teacher, long ago before Hugh and his medical complexities came into my life.  I like to think I was a good teacher.  I enjoyed it.  I worked hard.  And yes, I had 13 weeks holiday a year!

Being a teacher defined me somewhat.  I was proud of my profession and what it said about me.  (That was before Mr. Gove went on his teacher-bashing campaign of hate).  I taught at a mainstream primary initially, and then went on to teach children with autism in a special school.  I did a degree at university, a PGCE and even started a Masters in Special Education all to be able to teach and further my career.

My name is Emma.  I haven’t taught in four years.

I returned to work briefly between having the boys (there’s only 14 months between them) and my intention was to return to work part time after having Hugh.  I expected he’d attend the same nursery as Sean.  Some six months after having him, I had to reconsider – I didn’t think he’d cope in nursery, so mum and I planned that she’d also work part time and have Hugh on the days I worked. Not returning to work wasn’t an option financially.  I knew I’d miss the boys while I was at work and at times dreaded the thought of going back and leaving them, but I enjoyed teaching and part time hours was a great compromise. 

Hugh developed seizures just as I was due to return to work.  School were great and I extended my maternity leave for a further three months.  Week after week was spent back and forth to the hospital for either routine appointments or desperate emergencies.  We began getting recognised by the paramedic crew he was spending that much time in ambulances.

I vividly remember sitting by Hugh’s hospital bed after another late night blue-lighted trip to A&E and asking how I could return to work to look after other people’s children, when my own needed me so badly?  How could I concentrate on doing a day’s work if Hugh was fighting for his life in hospital?  But how on earth could we afford to live if I didn’t work?

I postponed returning to work for a further six months – again, the school were brilliant and understanding – yet as the six months drew to a close it became increasingly apparent that Hugh was a very poorly little boy.  I officially handed my resignation in when Hugh was 14 months old, around the same time we were told to prepare for his end of life.

Hugh, thankfully, has proved to be a fighter and is fast approaching his fourth birthday, stronger, healthier than we could ever have predicted.  His needs are still complex and the risks are still there – he can stop breathing at any time, yet he is able to attend school part time, with a 1:1 carer and we expect he will be full time from September.

With all these hours at school then, it makes sense that now, at last, I can consider returning to work.  Becoming a parent has, I’m sure, made me a better teacher, becoming the parent of a disabled child has taught me so many important lessons that I know will have positive impact on the way I teach.  I am in a unique position of really being able to empathise with the parents of the children I am teaching.

You’d imagine returning to work would be easy.  Hugh’s appointments are few and far between now and his health is relatively stable.  Teaching ensures I don’t have the additional worry of sourcing childcare in the school holidays either.

However, it’s not that simple. 

The unpredictability of Hugh’s condition means that he can be fine one minute and in the back of an ambulance the next.  He can, and does, get ill quite frequently too.  Unreliability doesn’t feature on many job descriptions.  A call 10 minutes before I’m due to start, or dashing out of class half way through a lesson, won’t sit well with many employers.  For this reason I considered supply teaching – working days of my choosing, avoiding illness and minimising the risk of letting people down at the last minute.

But I also have to drop two boys to two different schools each morning and pick them both up each afternoon.  Sean could go to afterschool club and it would be relatively easy to ask a friend or grandparent to drop him off or pick him up.  Getting Hugh to and from school is trickier.  He has a carer from 9-3.30 who stays with him at school.  Other than his carer, and me, Stephen and the staff at Acorns, no-one else is trained to care for Hugh.  Caring for Hugh involves being able to resuscitate him should he require it - giving mouth to mouth or using a bag and mask, administering oxygen, giving emergency rescue- medication for his seizures and being able to tube feed.  Furthermore, you’d need a car big enough to house his enormous special needs buggy, a specialist car seat and the strength of a bear to lift him.  In order to drop him off and pick him up, I could only work between the hours of 10 & 2 – can’t see that fitting in with many school timetables.

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I’m not really sure how this situation can be resolved, but I feel the choice of being able to return to work has been taken from me.  I feel I have so much to offer since having Hugh and I trained long and worked hard to be able to do a job I loved.  Having a disabled child is three times more expensive than bringing up a typically developing child (See Contact-A-Family).  We’ve moved house so we can adapt it for Hugh which has resulted in a bigger mortgage, increased council tax and increased gas and electricity bills.  Heaven knows we could do with me returning to work.

The irony of the special needs teacher, not being able to teach after having a child with special needs has not escaped me.


  1. Emma, this is absolutely heartbreaking. So well written, it should be sent to Mr Cameron. Love to you and your amazing family. X

  2. Thanks Jess, I appreciate your comments. It's very frustrating. xxx


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