Do you remember? Questions in the Special Needs Minefield

Do you remember the day you heard?

Do you remember?

Do you remember the day you heard?  Do you remember the day your child was given a label?  Do you remember the day your life was turned upside down? 

Do you remember thinking your heart would never feel this much pain again?  Do you remember thinking you would never cope with this? 

Do you remember? Questions in the Special Needs MinefieldDo you remember thinking it would never be as bad as this ever again?

Do you remember making that first call to family or friends to tell them your news?  Do you remember hearing that shock and pain in their voice? Do you remember thinking they sounded disappointed – just a little bit but you’re sure you heard it? 

Do you remember looking at your partner and thinking “do they blame me”? 

Do you remember thinking it would never be as bad as this ever again?

Do you remember sitting with your child being sedated just to have a stomach ultrasound?  Do you remember telling a junior doctor about your child’s condition because you know more than most now? 

Do you remember sitting outside operating theatres?  Do you remember looking for the doctor after the operation?  Do you remember seeing that look that said “we tried …”? 

Do you remember the dayDo you remember thinking it would never be as bad as this ever again?

Do you remember bartering with a God you’ve always claimed not to believe in?  Do you remember the amazing things you were going to do as long as your child came through the operation? 

Do you remember the first nursery that turned you away without funding? Do you remember being turned down when you applied for the funding?

Do you remember thinking it would never be as bad as this ever again?

Do you remember the first time you appealed against a decision?  Do you remember waiting for the letter to come?  Only for it to contain bad news? 

Do you remember every muscle in your body struggling to keep you upright?  Do you remember wanting to burst into tears but your child was watching you?

Do you remember the dayDo you remember thinking it would never be as bad as this ever again?
Do you remember the first time that a stranger realised your child was different?  Do you remember that look of pity? Do you remember that look of contempt as though you were to blame? Do you remember feeling judged? 

Do you remember that first public meltdown?  Do you remember those people just stopping to stare?  Do you remember wanting to just break down and cry?  Do you remember being kicked and punched by your child due to their distress? 

Do you remember thinking it would never be as bad as this ever again?

Do you remember those people talking loudly nearby?  Do you remember their comments about bad parents?  Do you remember their comments about naughty children?

Do you remember hearing your child needed a statement?  Do you remember everyone telling you how difficult it was to get a good one?  Do you remember all those assessments?  Do you remember repeating your child’s history to several professionals?  Do you remember having to focus on all that your child cannot do?  Do you remember feeling like you were betraying your child by talking about them like that?

Do you remember the dayDo you remember thinking it would never be as bad as this ever again?

Do you remember hearing that children like yours are more likely to be abused?  Do you remember thinking that would never happen to your child? 

Do you remember realising that your child had never been told about abuse?  Do you remember realising you had never taught your child how to report abuse?  Do you remember thinking you had let your child down?

Do you remember thinking it would never be as bad as this ever again?

And tonight, as I write this, I am thinking it can never be as bad as this ever again. 
 
Sadly, I now know from experience, that it will.
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4 Comments

  1. Oh this just broke my heart. My daughter has Rett Syndrome (she is 6) and I remember feeling most of what you’ve written. Fantastically well done, I wish I’d written that myself. VERY impressed!!

  2. 🙁 for you. I do remember thinking nearly all of these things, and it hurts to remember. But the rollercoaster goes on, don’t think we ever get the chance to get off it. Take a deep breath and remember you can’t be supermum – no-one can. x

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