Wherefore art thou reader

I was chatting to my husband the other day about the blog and he asked me who my readers were. Were they mostly other parents of children with special needs and disabilities or did I have many readers who weren’t? I said I wasn’t too sure. I can list a few people who I know regularly read the blog and there is a big mix of special needs parents and dare I say ‘ordinary’ people, but didn’t know exact numbers or ratios.

I know that some of you readers who don’t have children with special needs or disabilities read this blog because you care. You care about Samuel and I and perhaps we chat a bit on twitter and you want to see how he’s getting along, or perhaps you feel duty bound as my friend, whether you are online or ‘real life’, to read. Perhaps you want to read my blog because you hope to have an insight into my world and use my blog as a window to see how things roll on this side of the fence.

Perhaps you are a parent from my world and want to read stuff from someone who knows what your world is like. To maybe, hopefully, pick up some ideas, or just comfort. Do you read my posts and find yourself nodding a lot? Or maybe you just like to check in now and again and see how we are doing.

There are two things though that I do hope you get from reading my blog. I might be flattering myself a bit here, but I really hope that if you aren’t from my disabled world, reading my blog has given you some kind of insight. You now understand about gastrostomy buttons, feeding pumps, special needs equipment, what a hospice is and what a hospice isn’t and how the special needs world can be a positive world.

And if you are a fellow special needs parent (*high fives*) I hope you just know that there is someone out there who gets it. Who goes through the same things as you. Understands those times when all you want to do is scream, cry, shout but also love, cuddle, enjoy and celebrate.

And as for comments, as I said before in Dear Reader, I get a few, not a lot and that’s ok by me. However, if someone reads something that I wrote and thought ‘I’m glad I’m not the only one feeling like that’ or ‘I like that’ and it made a difference, that would mean more to me than any comment.

I can’t help but be curious as to who you are dear reader and why you’ve popped by. It might be your first time or maybe you are a regular. You might be intrigued by something said on twitter or maybe you’ve just stumbled over the blog by chance. But whatever the reason & whoever you are, I’d like to say thank you and you are always, always very welcome to pop by anytime.


22 thoughts on “Wherefore art thou reader

  1. I for one love your blog, your writing is so honest and genuine. I’m not a special needs parent or anything but I am very grateful that you allow us into your world (plus I’m a big fan of Sam!) x

    • It means so much that you pop over regularly for a read and update on Samuel and that you are so fond of him. It’s knowing I have readers like you that helps me keep my blogging mojo! x

  2. Hi Zoe, as you know I too am a parent of a child with Special Needs and i regularly read your blog. My situation has some similarities to yours in that my child too has a rare Genetic condition, we don’t experience the medical issues that you do with Samuel and are fortunate that Max rarely requires medical intervention. So why do I read your blog? That’s a good question. I guess it’s because I feel a connection with you, can relate to many of the emotions you express and that as a newbie to blogging I gain inspiration from your blog. All those things aside my main reason for reading is that your boy is so gorgeous that I can’t resist reading about him and smiling at the beautiful pictures you post of him. I love your positive attitude and admire that even though Samuel is still so young you manage to put aside your grief to see all the gifts he brings to you. My Maxie is 8 , it took me several years before I was able to see the positives in our situation.

    • Thank you. I think the only way to keep afloat is to be positive. I do my best for Samuel every day and being positive helps that and helps Samuel in turn. I’m proud of him, so very proud of him and although I have my dodgy moments, I never want to dwell on the negative for too long. Thanks for reading. x

  3. Moi? You want to know about moi? Are you sure? Do you know what you may be unleashing? *Puts hair behind ears, takes deep breath, assumes the position*

    I read your blog first because you are friendly on twitter. Then I found it very moving and undeniably real. There’s a lot of schlock out there and your voice, the way you describe your experience stands out as true.

    I very much admire the way you and your husband parent Samuel, how you fight for your family to enjoy life.

    I quite often don’t comment because I don’t want to say the wrong thing and offend you or your readers.

    For example, I have four children all with dyspraxia/dyspraxic issues (motor coordination disfunction which often has a cognitive impact) and I’m dyspraxic myself. It’s not a life threatening condition. It is a registered disability, though, and it was an adjustment, mainly a learning curve, when we got the first diagnosis.

    Completely unlike your experience with ARX, I really relish the dyspraxia and what I suspect it brings to us – a lot of quirkiness, bad handwriting ( some quite tricky educational issues) and continually spilt water.

    I can’t compare my children’s needs to Samuel’s and I really, really don’t. But I am interested in how we as parents of all sorts of children relate to their needs.

    Mainly, I just like your voice and often find your words inspirational.

    Please delete this if it’s offensive in any way.

    Cathy xxx

    • Thank you for reading and thank you for commenting. Although of course I would do anything, give anything to mend Samuel, to cure him if that miracle was available. But I can’t of course. But I do know that Samuel has brought out so much good in me, his dad and our family. I think I’m a much better person since becoming his mum, we have met so many fantastic people through Samuel’s condition and he brightens our lives every single day. Even on the grotty days there is always something fantastic to enjoy. Even if it’s just a long cuddle.

      Thank you for your kind words. I really do appreciate them. x

  4. Hello! I read regularly but often have so much else to do that I rush off and forget to comment… but the words still go in. I am both a ‘Special Needs’ and ‘NT’ mum; my younger daughter has autism and my older daughter doesn’t. I followed your blog initially because I like the way you write; you are honest and open, and write in a way how I feel I would, or at least would like to, if I was in your situation. It’s very informative and offers an insight into a different kind of world – but then every blog does that, just in different ways! So I love reading, and I love the pictures of Sam and his eyelashes 🙂

    • Thank you for reading and taking the time to comment and for your kiind words about my blog. And yes, hasn’t Samuel got the most spectacular eyelashes. I love posting photos of him, of my gorgeous boy, so I’m really really glad you like looking at them. x

  5. we love to come by and see you, I can’t persona;;y speak from experience but have nursed lots of children with special needs, I just always admired parents like yourselves, your inspiring

  6. Evening all! I read you blog because I understand. I feel it. I love the way you write and I am the mum nodding my head. Our children are very different, but my heart says the same as yours. I follow because your twitter makes me laugh, you make us smile and because, most importantly, we want to know how you all are…. X

    • Thank you Kate. You are a true friend, I really mean that. Our boys may have different conditions but it’s all relative. We will always fight for what is best for them, we will always do everything, everything we can for them, just as any loving parent would. x

  7. I recently discovered your blog, but now count myself as an avid reader. I don’t have any experience of disability and I love reading because its a personal experience that I know little about, you also explain the medical stuff well.

  8. Well we ‘know’ each other from twitter where we met through the epilepsy/seizures connection I believe. I read because I want to see how Sam is doing. Everyday is an achievement for a boy they said wouldn’t make a year were they wrong or what!

    • Thank you. You’ve been a Samuel supporter for such a long time and I’ve always liked the way you ask questions and show real interest in his condition and the ups and the downs. You always get the essence of what I’m trying to say. x

  9. I know nothing about special needs, and certainly not about Sam but I like to read your story and try and understand more. Blogging has opened my eyes to so many different people and their stories and I am enjoying learning.

  10. You sent me a unicorn. I thought you were a good’un before that but now I just heart you completely. I may not always comment on your posts but I do like to keep up-to-date with what goes on in your gorgeous boy’s life. And you’re a good writer. So. That’s why I read. And I think you know who I am! X

    • Thank you. It means so much that a)a lovely person b)fantastic blogger & writer c)coolest person in the cyber world, like you should take the time to have a read of my ramblings. You are always welcome and the kettle is always on. x

  11. Hello there!
    I am a new follower to you – someone I follow did #ff on twitter and I did indeed do as they suggested. I am so glad I did.
    I am not a mother of a child with disability or additional needs. But I have worked with children and adults with disabilities since I was a teenager.
    Your blog is brave, open, honest and so far (I have read a lot of your posts today – aplogies for sounding like a stalker!) addictive.
    Thanks for sharing I say.
    Han (mamabearwithme)
    ps) you are not matronly at all

  12. i just found your blog and am reading with interest about sam’s success with the ketogenic diet. i moved to kenya ten years ago to work for a school for children with special needs and ended up spending a lot of time with parents discussing what it meant to them to have kids with special needs. the founder of the school had a daughter with severe epilepsy and she had tremendous success on the diet. the other parents had children with a huge array of issues but i found most of them needed to grieve the ‘loss’ of the child they imagined having so enjoyed your thoughts on that. once the parents got to acceptance it was amazing seeing the changes in them and their children. you do a fabulous job, btw. he’s gorgeous.

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