Bye bye 2015!!

I would like to round off my year in 2015 a little differently.

Not with a summary of the rollercoaster ride we found ourselves on, that’s certainly not for the faint-hearted.

Not with pointless & meaningless New Years resolutions that come February will be long forgotten. (Seriously does anyone stick to them all year – or even remember them?!!)

Not with a projection on 2016 or what I want from it going forward (that’s for another blog I’m sure 😉)

No I want to round up 2015 with a bunch of thank you’s to those who have helped us through such a challenging year.

The biggest thank you must go to our families. Without your endless support, this year would have been so much harder. Without your generosity we wouldn’t have been able to provide Dixie with extra physio. Without your help we couldn’t have got through our hospital stay nor appointments. Maisy wouldn’t have always got to school or been picked up. Dixie wouldn’t be the best fed kid in town. You have no idea how much we appreciate all that you do to maintain normalcy for Maisy.

We love you all  💗

Thank you friends. I’ve made some pretty good ones this year and I want you to know how much you’ve helped me in my journey. Thank you for caring about us. For listening. For making me feel that I’m not alone. Thank you for letting me rant, for the advice and help on feeding tubes. For being there. Always.

Thank you to those who didn’t shut us out despite it being an easier option. Whether you’re in my real life or a Facebook friend, you have all played a part in my surviving this year. And ending it feeling pretty positive.

I love you 💗

Thank you to the amazing charities that help & support families like us.

To the charity Unique for working tirelessly on raising awareness of rare chromosome disorders and providing accurate information on many of these disorders for us parents. Thank you for helping us connect to other families and giving us an outlet.

To Mencap Leeds for providing Hawthorn family support. A place much needed for so many families. Thank you for being there and bringing some of the nicest people into my life.

Thank you to Dr community. For always being positive. Never focussing on Dixie’s weaknesses. For making me hope that Dixie will have a bright future and not putting a death sentence on her or worst case scenarios.

Thank you to our play therapist. As the only consistant therapist in our lives this year, you have given me self belief. In those times I’ve blamed myself for Dixie’s slow progress, you have made me see how far she’s come. And that somehow I’ve played a part in that. Thank you for your enthusiasm and for believing in us. And for being there.

Thank you to our community nurse. For building my confidence in handling Dixie’s new medical equipment. Thank you for listening and supporting us.

We love you 💗

Thank you to those who follow Dixie’s progress. Who are interested in her. Who read my blog because you care enough to want to understand how I feel. The blog that started out as a way to let people know how Dixie was doing so I didn’t need to feed it back individually. But to me has become so much more.

Lastly thank you to my wonderful girls and Daddy L. Dixie for just being you, for fighting hard. For giving me hope. Maisy for being my little diva and keeping me on my toes. And for loving Dixie as your little sister. Daddy L for stepping up more than I ever imagined. For being strong when I’m feeling weak.

I love you all 💗

Happy New Year 🎉🎊


It’s beginning to look a lot like Christmas :)

Last night I began the long and tiresome task of wrapping the girls ‘santa’ presents. 

Only this year it doesn’t feel tiresome. This year it actually feels pretty wonderful. 

We have done the usual of starting to buy in early November, then buying more again early December. Then a panic buy mid December in case we hadn’t got enough.

We had enough. We had plenty. In fact, we have plenty X5!!!! 

And I was struck by how ‘normal’ it all seemed. To be getting excited about pulling out Dixie’s toys that I’d forgotten we’d bought, and thinking how much I couldn’t wait for her to open them. To see if we’d found anything amongst the pile that she would enjoy and examine.

It mostly struck me because this time last year those feelings were missing. There was no real excitement. I hadn’t worked out what she needed. I hadn’t put much thought into what to buy if I’m honest. 

After all did it matter? I had just been told devastating news back then that had meant she was no where near her real age.

In fact, I remember when we were asked what Dixie would like I just dismissed people. I told them not to bother. Mostly because I didn’t know what to tell them to buy. I didn’t know what she liked or didn’t. There was no preference at all. She was 6 months old going on 3 months.

I was still angry then, although I didn’t realise it at the time. I was so busy grieving for the child I had expected that walking the aisles of the toy shops was yet another reminder that my child was different.

And I had been full of self pity. Full to the brim. Woe is me, why us etc etc…

This year. I’m a different me. The self pity has all but gone, and I hope it stays that way.

Now I realise I was expecting far too much from her. Yes she was delayed but even if she hadn’t been, what six month old would have understood Christmas? 

This Christmas however, oh my. I could list a million things she would love. A packet of wipes, some paper to rip, a sleeve or a slipper. Maybe an empty yoghurt pot or a balloon..!! 🙂 🙂

Seriously though, her play therapist gave me pointers on what her next development stage would benefit from and we went overkill. And it was such a pleasure looking for those things. 

I feel like I have some things to make up for this year. I know she won’t remember, but I do. I want her to know I’m sorry more than anything.

This year will be a million times better. Santa will be coming to our house in serious style. And not just on the gift side of things, I feel content. I feel lucky and blessed. I feel thankful we are all healthy and we are all together. Who could want for more?!

And I can’t wait to see her sitting in her chair, belly laughing at the sound of ripping paper. Helping rip that paper too. Working out her new toys. Smiling as Maisy bounces off the walls in excitement. 

And as its Christmas and it’s the rules to have a chocolate breakfast, I will be melting some for her to have too. 

I can’t wait to make more memories to cherish! 

So from us to you….Merry Christmas and thank you for being a part of our journey 💗💗