You know you’re a Premmie/SEN parent when…

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…you have more medical appointments in a week than hot meals.

…the guy who runs the hospital car park occasionally lets you park for free because he is worried about your bank balance.

…you can direct lost visitors to parts of the hospital people on reception have never even heard of.

…you are pleased your favourite syringe made it into the steriliser and is ready for use.

…you have a favourite syringe.

…you don’t just know how many mls of each medicine your child has daily but can convert it to mgs without thinking.

…you can say things like periventricular leukomalacia without tripping over a syllable or breaking into a sweat.

…you are mistaken for a paediatric consultant (this has happened to me: three times in two different hospitals).

…you can speak almost entirely in acronyms (PVL, IS, GDD, IVH, PDA, NEC, CLD, SEN, IEP).

…you use the term inchstones rather than milestones.

…you stop using the word normal (even with air quotes) entirely and say typical.

…6 hours sleep feels like winning the lottery.

…you can parrot huge chunks of ‘Welcome to Holland’.

…you don’t see a child with disabilities and think what’s wrong with them but notice their amazing smile or beautiful face or how funny they are.

…you see what a child can do and not what they can’t.

…you are pleased when dressing or undressing your child becomes a wrestling match because it shows they have the muscular and mental strength to fend you off (see Exhibit A below and I hope he’s not intentionally flipping me the V, by the way).

…the smallest thing (the opening of a hand, the mouthing of a word, an act of mimicry) can make you happier than you ever imagined possible.

…you are utterly floored when your child tries to wave at you for the first time in their life and nonchalantly transfers an object from one hand to another as if they’d being doing it all their lives. Both of these things happened today, and yes, I am writing this post with tears of joy in my eyes.

…despite all the heartache and anxiety you feel lucky and grateful every damn day.

I would love for you to add your own ‘Whens’ to this list. Please use the comments box below. I love to hear from you!Image

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14 thoughts on “You know you’re a Premmie/SEN parent when…

  1. mushywalnut

    .. you find yourself preparing for the ‘she’s an anxious mother’ stare from people before you explain the medical history for your paranoia when it comes to your child

    Reply
    1. mrboosmum Post author

      Oh I wish we could meet and compare stares. I also use it in cafes or when out and someone says ‘would you like a highchair’ and I say he can’t sit I’m one.

      Reply
  2. sarahhillwheeler

    Really well written post (hope that doesn’t sound patronising, but I can’t think how else to put it.) I can identify with a good few of these. One that stays with me is “When you really look forward to a chocolate flapjack from the hospital shop” and, another, (because J had a bowel obstruction too) praying anxiously and celebrating wildly when he did his first poos…after weeks spent monitoring his bowel movements I never complained about changing nappies…which I guess strilkes a lot of parents as possibly quite gross!

    Reply
    1. mrboosmum Post author

      That sounds just lovely, not at all patronising. Thank you! I totally understand the whole poo thing (poo can be a great source of pride) and I occasionally treat myself to a hot chocolate as a reward for getting through appointments. Your hospital must seriously have better flapjacks than ours, though. Thanks for commenting.

      Reply
  3. juliemumonwheels

    Also when you get the tilted head then question how are you coping and fear in people’s eyes when you mention your baby. And you receive flowers but no congratulations cards

    Reply
    1. mrboosmum Post author

      Thanks so much for your lovely comments. I love ALL of these and recognise them all, too. We harldy had any congratulations cards, either. I think most people wanted to see if he survived. He had them when he came home 😦 How are things with you now?

      Reply
      1. juliemumonwheels

        My two boys still have challenges but oldest had his seventh birthday Saturday. And my youngest has stared preschool. They both have problems but bright moments out shine the dark ones. And smiles and laughter remind me how lucky I truly am. As I’m sure they do you

  4. amy

    I get VERY upset when my favourite syringe (60ml, medina flat-bottom-christ I need a hobby) needs to go to the big Bin Upstairs. Abbott kindly sent a replacement but it isn’t the same. Yet.

    Another: when you start viewing going to hospital (strictly outptaients) as fun, and occassionally pop in and use the cafe even on non-hospital days because it is so familiar, they know what coffee you like and your child responds well to the environment.

    Great post x

    Reply

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