Sitting in ‘the seat’.

Hey there, newly diagnosed self. I haven’t spoken to you for a while. Remember when we touched base a while back, I spoke to you to reassure you as you sit there in that ‘seat’- we are a few years ahead of the turbulence you’re experiencing today. I’m like a human crystal ball to you….if only I could actually reach out and tell you that as it stands, despite you thinking your world has collapsed, you’re ok.

I don’t know why I’m choosing now to reach out to you again particularly. This week hasn’t been that great, so whilst I would like to tell you I’m riding around on my unicorn in my fluffy pink world of perfection – things aren’t that perfect. Don’t get me wrong, I guarantee that what I’m feeling today can never be compared to your emotions right now – but honestly is the best policy I think….and today, at day 2,358 of their lives, we faced two doctors’ conversations which changed our lives yet again.
This may make you scared as to be honest, I’m a bit twitchy too. We’ve had plenty of blips along the way….with Zachary particularly. (The neurology situation you will go through following his MRI in 2014 is a real ‘smack you in the face’ sod but you get through it with a lot of tears, prosecco and a damn fine family and kick-arse group of friends).
Since then, the blips have seen you bobbing along, sometimes with your head under water and then pulling it back, saving yourself from drowning to bob along again.
That feeling of being overwhelmed is huge, when you feel life is spiralling and you can’t claw your way out – but guess what – those long glittery nails you have make you excellent at clawing. I always knew glitter was a very positive thing.
This week we had two lots of news. Medical news. Two appointments for two twins.
Neither appointment went that well, and for the first time in a long while (actually since that MRI in 2014) that spiralling feeling got hold of me and I was flashed back to the very seat you’re sat in now. The seat is one which sits you opposite a doctor who’s delivering news that you would never choose to hear, and the seat which then propels you, similar to an ejector seat, into fear and uncertainty which you wish would just go away and leave you alone. That seat sucks.
So yes, I’m really identifying with you today, newly diagnosed self. For a long while, I haven’t experienced the emotions you’re going through right now – but this week they came flooding back like unwelcome visitors. It’s hard to ever explain to others how that news feels. Many of my friends now who have disabled or poorly children have sat in that ‘seat’ so you won’t be alone, just as I’m not alone now. If only you could see how many people love the twins, how incredibly special they are to so many, how you have friends who are like your blood family, and how your own family have been shining stars of light at every step of the way. Yet, today, once again, I was reminded how even when surrounded by people and doctors and whoever, the ‘seat’ makes you feel incredibly lonely. Like you’re the only one in the world who has to process what you’re hearing. How your heart just hurts and that’s a very sad and isolated feeling because at the end of the day, you take them home, shut the door and it’s your responsibility to bat away the demons of the new medical news and cope with it for both you and for your most precious boys that the news affects.
But, there is something that is important to note here. Something called progress, and that progress can be developed alongside strength and tenacity and personal growth.
Newly diagnosed self, I see you – I see you just falling to pieces, yet your strength will build and you will become the biggest coper you’ve ever known. For I, this week, was given news that is so scary and will take another tiny piece of your already broken heart which has been patched up numerous times. I often think that my heart must now resemble the likes of a patch work quilt.
Yet, this week, instead of crumbling, I got up again. We followed that war time advice of keeping calm and carrying on. Whilst I sat there thinking ‘I could so easily freak out like now’, I didn’t. You didn’t freak out, though you did get upset and were so sad – but you didn’t freak. Now, this is progress. You also didn’t stab anyone who has complete lack of perspective in life in the face with a fork. (Note to everyone else’s self -this has never happened, only something that dwells but never surfaces from the depths of my dark mind when faced with plonkers).
Instead of hiding away under the covers like you are now, I put my slap on and went out with two friends to talk it through. Never thought you would be that logical, eh?!
Note to yourself: red lipstick will be as helpful to you as the glitter. (Black patent Laboutin heels would also be helpful, yet as yet, these have been unachievable. Though as I tell the boys, never say never).
Instead of spending my time nurturing the ‘what if’ monster, this week I’ve kept him at bay and am even writing about it. (Your dear friend will soon say to you – roughly in 2012 – that you should start blogging, and you ignore it, shamefully. Yet after a while you find that writing is extremely therapeutic and whilst you will never understand how others will be that interested in what you ramble on about, these ramblings are healing).
Note to our joint future self: keep writing, it’s cheap therapy.
So, whilst the news has been crappy and the fear has been strong, I wanted to say to you, newly diagnosed self, that you and me have moved on. There will never be a time when that ‘seat’ is ok to sit in and who knows if yet again one day we will crumble, but currently, I’m dealing with this furniture in the best way I can. You, newly diagnosed self, will get stronger and at times, considering what we have to cope with, I wonder if our bones are actually made of steel. Steel bones but with a marshmallow heart. (That bad boy is still soft and at danger of anything that threatens it).
Life keeps throwing us these curveballs but I wanted to tell you, you can cope and are doing ok. Don’t get me wrong, I’ve cried another river, but the main thing to focus on is that at least I didn’t drown.

3 thoughts on “Sitting in ‘the seat’.

  1. You are amazing. Your such a strong person and a fantastic inspiration to so many people. I’ve never been in that “seat” in the same way you have but I’ve had the pleasure of meeting your beautiful twins when in did a talk at their school. They are amazing boys with such determination and a wicked sense of humor. They give everything their all just like you do and they are a credit to you and your family.x


  2. With time , that seat will dry out, crack, and fall away….and in that time, you will not feel the heart break as you do now. And all because your boys will be saying to you. ” Mum… We told you so”! as they live their busy and rewarding lives, full of the things they are into, full of life and love…and it will be the very best reward to you and Mike to see them doing it….you both have been the most caring , thoughtful ,kind and loving of parents and an example to not only parents of disabled children ,but to Harry . You have guided him through so much and his experiences have added so much positivity and understanding of others needs and feelings to his life. You can,t do any better than that….ever!!
    God bless all of you.. Love you so much and forever proud and amazed of you all!!


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