Rare Chromosome Disorder Week 2016

It’s Rare Chromosome Disorder Week this week and so I decided to write a piece about all the amazing things my little star G does that makes her so unique and amazing! Her chromosome condition is 18q so here are 18 awesome things I love about her!

(I wrote it whilst looking at her hence sounds like I am talking to her!)

1. I love love love how you are so beautifully kind and inclusive, whomever you are playing with or around HAS to be included in your game and to make doubly sure , you’ll say “come on!” and give a look. Your little eyes and smile imploring them to join in! Who can resist!

2. Your speech is coming on and so I love how when I say “I love you” you say

“ov u too” in your little cute voice.

I love how you haven’t quite mastered when to use “sorry” and when I say sorry to you, you then reply “Sorry mummy”.


3. I love how unapologetically LOUD you are everywhere – in the supermarket you shout hello and wave to as many people as possible and love to scream for Mummy when I am just a meter away!

4. I love how you love Mummy cuddles. As a baby you hated to be rocked or held too close and it broke my heart, I felt pushed away and was scared you wouldn’t know how much I love you. But I persevered (I mean How could I not not hug and kiss you at any given moment!) and now you are SO much happier being cradled and snuggling up to me.

I love when I carry you and you suddenly look at me, grab my face and plant a big kiss on my lips. Just because.

4. I love how you love to copy me. I pull out a chair… You go and get your chair and pull up next to me. You look at me like you’re my biggest fan (that is both scary and awesome) I wear a dress and you want to wear a dress too!

5. I love how we have similar likes in music, I kid you not, I spent the majority of my pregnancy playing a variety of music through headphones into my belly! It is nice to see we share this connection and dancing!

6. Did I mention dancing! Your dancing is HILARIOUS A mixture of clapping, flicking your leg and shaking your bottom (or thinking you are by grabbing it) has me in stitches – you could dance all day if given half a chance! But the neighbours I’m sure would not like it as you love to shout (sorry sing) along too!

7. I love how you like football (thanks Footy pups!) but also adore wearing your tutu! Total oxymoron but works for you!

8. I love how concerned and equally upset you get when you hear another child crying. Many a time you have refused to move in the supermarket as you overhear another child crying- and you exclaim “OH no!” You’re sensitivity towards others far surpasses your age.

9. You make me laugh and cry when you regularly (accidentally) head butt, elbow, kick me in the face and proclaim “Oh no Dc mc stuffin” and you go and get your doc mc stuffin toy to give me a ‘check up’.

10. I love how you laugh about a second or two after everyone else just to join in. I also adore your hearty giggle when I tickle you and you scream ‘again again’ to more tickles!

11. I love how you enjoy saying “Cheers” with your bottle to everyone.

12. You are sooo cheeky, when you are ‘naughty’ and I am about to tell you off quickly say “sodeeey” (sorry)!
13. I love how resilient and brave you are despite having had so many hospital appointments and procedures, you have the best attitude and make me braver for it.

14. I love how you say “Silly Mummy” and I reply “No silly G” and you reply in this incredulous tone  “Meee?! Nooo silly mummy” – as I said before cheeky!

15. It drives me crazy but is equally sweet when in the middle of the night you shout “MMMMummy” or even just whisper “MMMummy” until I come and get you. – You then roll over and give me a massive grin and stretch out your arms (as clearly my bed is the desired destination)!

16. I love how happy you are. I always get comments on how happy you are and that makes me feel happy and proud as I must be keeping you happy! But I especially love when you wake in the morning and give me a massive smile and exclaim “Mummy” like you haven’t seen me in years!

17. I love how excited you are when I pick you up from nursery. You scream my name and run and give me a massive cuddle around my legs.

18. I love how strong you are. You have been through and are still going through so much daily and yet I am blessed with such a special happy, loving, determined, fun, clever and cheeky little lady!

Having a child with a rare condition is scary but I have a perfect child through and through. Whatever was deleted I hope was the capacity to be negative, unmotivated, sad and unhappy. She is a massive blessing and has changed me as a parent and person.

Happy Rare Chromosome Week celebrate your little ones uniqueness.

Thank you for inspiring me to write this post Adventures with J and Occupation (M)other xxx

Diary of an imperfect mum

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11 thoughts on “Rare Chromosome Disorder Week 2016

  1. Oh my word this is beautiful, utterly beautiful. I’m lost for words, I really am – it’s really stopped me this post. What a wonderful daughter you have, just wonderful xx

  2. Oh this has made me cry. Absolutely gorgeous and heartfelt and has made me want to meet you both even more! You truly have one amazing daughter and it’s clear how close you are. Beautiful xxxx

  3. This really is so gorgeous. G sounds absolutely wonderful – what a brilliant combination of sensitivity, happiness and really funny cheekiness…I love it. And you are lovely for being the mother that has nurtured, and is nurturing, all that beauty and recognising the changes she has brought to you too. We learn so much from our little ones don’t we…your point (13) about her resilience making you braver too is lovely.
    Thank you for the mention, I’m glad we could spark the idea BUT this is very much all yours and it’s perfect xxxx

  4. Love the supermarket story:) Reminds me of my middle son. After working on our greetings he would say, “Hi!” at the supermarket until somebody replied or waved back.

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