28 Apr 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