Today my heart broke a little…


Today is my niece, Katiya’s 4th birthday… She’s a very special person in my life and I love her dearly.

It is her that keeps me going, giving me a reason to smile on even the darkest of days.

Today, I cried inside, because I couldn’t give her a hug or kiss never mind attend her birthday party!

I’ve missed out on SO much recently, so so much, even my own graduation and birthday were spent in hospital, but it is this that has upset me most.

I would’ve loved to be there to share her special day, see her blow her candles out, watch her dance and sing happy birthday….. Make memories!

She doesn’t remember going out to places with me, as I’ve spent so much of her life being bed bound.

At the moment I’m in hospital on week 5, after being admitted with a UTI I’ve developed a nasty, nasty tummy bug and been septic with it, so poorly I nearly ended up in ITU two different occasions- but luckily avoided that and I’m now improving.

I need to be clear for Tuesday for my bladder surgery- which we all hope will reduce the number of UTI’s I get subsequently!

Its these hard times that teach me so much about myself though, and that is something I’m thankful for.

I’ve learnt to seize the moment – if I’m feeling well enough, DO IT…. As tomorrow I may land back in hospital for another month! So the next ‘moment’ available is dedicated to Katiya for some belated Birthday quality time!

Don’t let embarrassment stop me!
There was a long period of time where I’d stay home as I was too embarrassed robe seen out on my stretcher, now, I push past it- I’ve had to! To opportunities where I’m physically able to go out (even on my stretcher) are very sparse, and so I must ensure I use them to their full potential!

Take photos!
I hated seeing or having my photo taken while on a stretcher and in a neck brace…. But that is my life, & I need those photos to look back at with Katiya and remember all the fun times we have together… I also need them for raising awareness of my situation and my fundraising campaign and have had to get over my hate for photos, videos and voice recordings in order to let my story be heard… As that’s the only hope I have of raising the funds giving me a chance to get surgery, get better and LIVE!

One small moment can change the week!
Just one happy moment shared with my niece has the power to boost my mood for the entire week.. She’s the kindest most caring and loving child I’ve ever met.

Only the other month she announced excited to me that she

“was having a birthday soon to get lots of money for your operation in America Aunty Mel”

-She was adamant that she was getting money for me… So selfless at such a young age!

 


About Melanie

PLEASE DONATE NOW to #MelaniesMissionToLive - a cause created to fund specialised medical transport and world specialist, potentially life-saving spinal and brain surgery for Mel (a 26yr old Newcastle University biology graduate from Cramlington, Northumberland) before its too late!! Due to Mel's complex underlying conditions (EDS and CCI) the surgery is only available in the USA and costs over £150,000!! WE NEED YOUR HELP

Leave a comment

Your email address will not be published. Required fields are marked *