Tinks is Two!

My little little girl turns two on Sunday!

My reason for starting to write (yes, blame her!), my reason along with her sister, for getting up every day and having chosen the path that I did.

Now as you know if you have read my previous blogs about Esme, life hasn’t always been as peachy as it is now.

I won’t do her or my readers the disservice of going through the whole thing again on what should be a celebratory blog but just to explain, Esme is SWAN baby.

She has a Syndrome Without A Name.

Born small at just 4lb 11oz and always trundling under the 0.4th centile (or mum torturer as it should be known) she has been tested for some pretty horrendous conditions since birth from Progeria (premature aging condition) to lesser life threatening ones such as Growth Hormone Deficiency and forms of dwarfism.

Luckily for us and her, just before her first birthday the tests for the worst conditions came back negative and subsequent tests have shown that whilst has ‘something’, her Growth Hormone is actually quite high and the suspected dwarfism was dismissed due to her normal proportions.

Her last encounter with Manchester Genetics was summarised with:

“She seems to possibly just have ‘Esme Syndrome’ which could even be an amazing one off mutation”.

Mutation is a terrible word.

She is beautiful.

Her little elfin face has become striking and whilst she may have some unusual features, her whole personality is now what makes her unique.

She is such a firecracker.

Not placid like her sister, rather a huge character in a tink body, not allowing herself to be intimidated by anyone bigger.

Whilst I did look ahead and worry about her starting school and if Niamh may have to protect her I suspect it may be the other way round with Esmefighting off any of Niamh’s aggressors.

Happy so say NO to people and to forge her own way in the world.

At her recent parent’s evening (I know – how cute!) her key worker was actually unaware of her background which was, in a way nice, as I know that each observation was based on a ‘normal’ (urgh) child her age achieving these milestones.

She isn’t just achieving what she should be too.

She is showing signs of advancement which when I look back to sad days sat at home with her as a baby lied on my knee, obsessively checking for things like reflexes and eye contact, this is a big deal.

She makes the whole world, not just ours, by being in it.

I’ve accepted that a diagnosis may not be imminent but as I have already diagnosed her as a badass, the medical stuff can wait.

I’ve met some amazing Mums over the past couple of years that have had far worse to deal with such as Alex (whose beautiful girl Grace has flourished), Jane (mum to Josh, a little boy with a smile that would brighten anyone’s day), Emma (mum to Brodie, a brave little boy that has has numerous surgeries and will continue to do so into adolescence) and Thea (Mum to Isla, another beautiful Tink).

These ladies are my inspiration and my perspective and as I have always said, along with their children, they are every day super heroes.

I met each and every single one for a reason.

On May 28th I’m running the Great Manchester Run for the Royal Manchester Children’s Hospital to raise money for the place that has taken care of her and us (and team supermum above) as a family so far.

It’s a personal challenge to myself that i’m hoping will be a positive way of marking her second birthday and drawing a line under the negativity that has blighted our time together until now.

I am running with Emma mentioned above and I’m terrified and excited but eager to get it done.

Please sponsor me if you can or just give me a share.

Link is HERE.

Happy Birthday my Beautiful Tink x

Enjoy the post? Read more :

  • Avatar
    Nicki Speaky Flan
    Posted at 07:28h, 28 April Reply

    She’s Beautiful and defo has that ‘Glint in her eye’ seen quite often in number 2 kids! If she’s anything like my number 2 mischief and mayhem are a daily occurrence!. ;-). X

  • Avatar
    Charlotte Robinson
    Posted at 07:44h, 28 April Reply

    Gill Walker Lowe another blogger but of girls (I work with her husband) x

    • Avatar
      Jodie Danner
      Posted at 07:48h, 28 April Reply

      I’m sorry about that. I hope he’s tidier in the office β˜ΊοΈπŸ˜‰ xx

    • Avatar
      Charlotte Robinson
      Posted at 07:51h, 28 April Reply

      Haha. Thank fully we work in different offices these days πŸ˜‰ x
      My friend Gill has recently started blogging. Her page is The Northern Mob if you wish to follow her on Instagram/Twitter/Facebook πŸ€“ xx

    • Avatar
      Jodie Danner
      Posted at 07:56h, 28 April Reply

      Oooh just looked on fb and can’t find it, can you post link? Xx

    • Avatar
      Charlotte Robinson
      Posted at 08:00h, 28 April Reply

      I can’t find the fb page either x

    • Avatar
      Gill Walker Lowe
      Posted at 19:08h, 28 April Reply

      Ah it’s thenorthernmob all one word xxxx

    • Avatar
      Jodie Danner
      Posted at 19:15h, 28 April Reply

      I’ve given you a like πŸ‘πŸ»πŸ‘πŸ»πŸ‘πŸ» xxx

    • Avatar
      Gill Walker Lowe
      Posted at 19:23h, 28 April Reply

      I’ve requested to change it as you’re not the first to struggle finding it 😘

    • Avatar
      Gill Walker Lowe
      Posted at 19:24h, 28 April Reply

      Thank you. I’ve just had a quick look at your blog… your daughter is adorable! Looking forward to reading more xxx

  • Avatar
    Joan Danner
    Posted at 09:32h, 28 April Reply

    Our lovely Tinkerbell may be small but she’s extremely strong and can stand up for herself xxx

    • Avatar
      Jodie Danner
      Posted at 09:35h, 28 April Reply

      Small but fierce πŸ’ͺ🏻πŸ’ͺ🏻 xx

  • Avatar
    Gemma-Eve Fairhurst
    Posted at 09:51h, 28 April Reply

    ❀️❀️❀️❀️ I cried! Seems like a lifetime ago we first met at breastfeeding group! Tink is a firecracker especially if anyone touches her slide at playgroup πŸ˜‚πŸ˜‚ xx

    • Avatar
      Jodie Danner
      Posted at 10:41h, 28 April Reply

      Ha ha ha! She needs SAS training to protect herself from the ferals there πŸ˜‚πŸ˜‚πŸ˜‚ Thanks Gem xxxxxx

  • Avatar
    Cath Jones
    Posted at 22:33h, 28 April Reply

    Beautiful Tink indeed! – Happy Birthday for Sunday Esme 😍 xxx

Post A Comment

CommentLuv badge

This site uses Akismet to reduce spam. Learn how your comment data is processed.