Saturday, 16 March 2013

What to Expect: Your First Special Year

Back when life seemed to follow a clear path, before Little J’s symptoms were apparent, I would often read up about what we could ‘expect’ from his babyhood.  I was excited to know when he would crawl, when we would hear his first words.  Like many new parents, I had the ‘What to Expect: Your First Year’ book.  I would read the relevant month, smile in recognition of the skills he had gained and sometimes flick ahead to see what excitement was in store.  Then, when he was seven months old, we began the five week hospital stay that changed everything.  When we left it was clear that something was very wrong.  All of a sudden his development seemed to just freeze.  We were no longer moving chapters.

All baby books were relegated straight to the bookcase.  All ‘developmental’ e-mails sent as marketing ploys for various retailers were deleted immediately (these remain pretty irritating.  Nothing like a ‘do you know what your toddler will be doing this month?’ e-mail to bring you down.  Yeah I can pretty much guess, but I bet you don’t.)  Then this week, I found myself doing something.  I found myself reaching for the ‘What to Expect’ book.  Not because I was worried.  Not because I was wondering if there was any chance of ‘catching up’.  I picked it up because I was interested.  It had been a while since our last developmental review by a paediatrician and I was intrigued to see where the book would place Little J. 
I then realised the monumental change that has happened to me.  It has been almost exactly one year since we left hospital.  One year since we were stunned by the realisation that our child had an unknown, life changing condition.  In that year I have moved further and further to a point of acceptance.  I don’t think about ‘milestones’ and pray that little J will suddenly meet them.  I accept that we are now past that point.  But getting to this (often unsteady) point of acceptance has been tough.  I wish there had been a relevant guide.  A book to tell me that one way or another, we would get through this.  Something to explain what medical acronyms mean, how to re-set a SATs monitor in hospital when your child takes it off (there are only so many times you can call the nurse) and how to fight the system when you need to.  But no such book exists.
If there was. If I could send something back to myself, I wondered what it would say….

What to Expect: Your First Special Year
1)  You are currently in denial, maybe even a little shock.  You think you aren’t, but really you are.  You know that whole not wanting to talk about it, wanting to move to the middle of nowhere and cling onto your child away from the rest of the world thing.  Yeah that. 

It will pass in time.  In time you will be able to talk about your situation with ease, even to strangers.  You may even go as far as posting your experiences on the internet for all to see.  I know, crazy thought. 

2)     You will lose all sense of shame.  Whatever it takes to make your child’s life that little bit better, to raise a smile after yet another invasive medical test, or to distract them from pain – you will do it.  You will think nothing of dancing down supermarket aisles.  You will not care about the group of schoolchildren behind you at the bus stop as you sing ‘what a good baby’ to the tune of Lady Gaga’s ‘Bad Romance.’  With jazz hands.

3)      You no longer live in an area.  You may think that you do.  But I am afraid that you don’t.  Where you live is no longer defined by how nice the park round the corner is, or the lovely high street a short drive away.  You now live in a borough.  Well, you always did, but your local authority never mattered quite like it does now.  You know that fabulous private nursery and great GP surgery a few streets away, but in a neighbouring borough?  I am afraid you need to look away and forget about those.  You now have a child with additional needs.  That requires funding.  Unless you are up for a fight, other boroughs will not be too keen on providing that.

Oh, and which borough you live in matters.  It matters a lot.  If yours is feeling stingy, I’m afraid you may have to move.  But that’s more of a question for your second special year.

4)     You will have an affair with Mr Google.  Everyone will tell you that he is no good for you.  He just upsets you.  You will resolve to stay away.  But then you will have something new to ask him and you won’t be able to resist.  Only this time you will keep the heart-breaking possibilities he tells you to yourself.  You will resolve to stay away again. I’m afraid this cycle will repeat itself.

5)     Life will start to resemble Groundhog Day.  At first, this will be painful.  You will see your friends’ new babies surpass your child developmentally in a matter of months. Then you will come to accept.  You will appreciate the value of moments and understand that these are what differentiate your days.  You will stop obsessing about first steps or first words and relish the first smile of the morning and the first laugh of the day.

6)     You will become complacent (see point 5).  You will stop worrying about baby proofing or play pens.  Your child will then seem to wait for you to leave the room before miraculously developing the ability to roll across your entire living room and vanish under the sofa, where they will of course lie silently whilst you panic.
7)     You will be returning to the 1980s.  Not the perms and shoulder pads (that’s really your choice).  No, this thirty year throwback will come in the form of one of the most irritating bits of technology in existence.  The fax machine.  Yep.  You know that thing in the corner of the office that no one knows how to use anymore?  It will become the bane of your life.

In the NHS, everything is sent by letter.  If something needs to be done ‘quickly’ it is sent by fax.  You will constantly be waiting for someone to fax something.  For a hospital to fax another one.  For a paediatrician to fax your GP about a much needed prescription.  These faxes will often not arrive and you will spend a lot of time in your GP’s reception shouting, ‘press send now!’ down the phone.  You will try and convince people to use a more effective method of communication (e-mail, carrier pigeon?) but they will be deemed unsafe for confidential medical information.  No one, however, will bat an eyelid when your child’s confidential information is faxed to the wrong number.  Again.

8)      You will notice things that you never saw before.  You will notice the inaccessibility of certain shops and restaurants for anyone other than the able bodied.  You will recognise certain buggies - Those that are a hybrid between a pushchair and a wheelchair.  You will wonder how you never noticed before.  You will notice the added note of panic in the face of the mother trying to calm her spinning five year old in the middle of a coffee shop. You will hear her calm tone and use of language, and you will know. 

You will exchange a smile.  And then you will both know.

9)     You will make new friends.   You will seek them out gradually.  Some you will find virtually, some you will meet face to face.  Your stories will be similar, though you may not always have much else in common.  You will form a diverse, complex and even powerful group.  Eventually, you will come to realise - you are part of a community.

10)   You may experience the prejudice of strangers.

11)   You will experience the kindness of strangers.

12)   You will change. 

You will leave this year a different person to the one who entered it.  You will experience a level of love that you did not think possible.  You will no longer care about things that used to seem important.  You will emerge more patient, stronger and more determined.  You may emmerge a little battle-scarred.  But you will emerge different. 

And it will be for the better.
This post is part of the Undiagnosed Children's Day blog hop.  To return to the blog hop, click here.


  1. It takes me back, but yes I remember so much of this x

  2. I'm really loving your blog. Thank you for writing this. We're thinking of you guys xoxoxo

    1. Thanks Myles! Hope you guys are well and having lots of fun in the Aussie sun xx

  3. Love all of these, and agree with many. Really can't believe anyone out there still uses a fax machine though??!! :)

    1. Thanks Steph. Ah the fax machines...I think the NHS may be all that's keeping the floundering fax machine industry going! One day it will move to has to move to e-mail...surely!? :-)