hey girls

well today i finally gave in to the inevitable...i took lily-ann to an appointment to be fitted for a wheelchair...it feels like i've just given up any hope of her ever walking

i sat there, watching her all happy and smiley in the tester chair, and i think it really hit me just how hard it's going to be for her, going through life, she's never going to have any of the 'firsts' like a normal little girl...she'll never know such wonderful feelings like, falling in love, getting marries, carrying a baby and being a mummy....

i literally felt my heart breaking for my happy little angel, she deals with so much, and from now on(well in 4weeks) will be confined to a chair with people giving her 'those looks' and she's just so accepting of it

sorry girls...feeling really sad and emotional tonight

awwww hun It must be heart wrenching, I just cant imagine what you are feeling. Life is so unfair sometimes. Just remember that whatever she can or can't do, she couldn't have wished for a better mummy !! Thinking of you xx

Oh honey. Must have been a heart rending day for you. Wish i knew what to tell you but i couldnt even comprehend your pain right now. All i can say is shemay not have the firsts other so called normal girls do but she brings joy to everyone who's lives she touches and every photo ive ever looked at she seems to be the epitome of innocent joy to me. Shes your beautiful little girl and as heart breaking as this is for you she will always be special and loved. Sorry thats of no help i just wish there were better words. Massive love to you right now xxx

Hun i feel for you and her so much.

I cant imagine how hard it must be for you to have to see your beautiful daughter going through all this and knowing it will never get better.

But i just want to say the fact that Lilly-Ann is always laughing and smiling is a testament to the parents she has, and that whatever her limitations she will always be the best that she can be. So instead of thinking about what she cant do and god it must be hard for you, celebrate what she can do and the fact she is here at all. The wheel chair can only enhance her life.

Massive love to you all and a mega virtual hug (i will give you a real one when i see you) xxxxxxxxxxxx

Aww I'm sorry hun, it's so heartbreaking. I don't know what to say really as I don't think anything I can say will help much. At least she has a wonderful Mummy and Daddy who will give her as much as they can and help her with whatever xx

anyone in your position would feel like you do now. lily-anne might not have the typical firsts but she can achieve her own firsts, again i can only re-iterate what the othrs have said she just seems a little fighter and is always so happy which shows what a great little family you have.

pinkyd wrote:

anyone in your position would feel like you do now. lily-anne might not have the typical firsts but she can achieve her own firsts, again i can only re-iterate what the othrs have said she just seems a little fighter and is always so happy which shows what a great little family you have.

couldnt have put it better xxx

there is nothing i can add to here the ladies have said everything im thinking ! ,,,

she is beautiful kenty and very lucky to have you,sam and lewis as her family !!

awww, poor Lily-Ann, its a good job she is such a happy child, otherwise it would be even harder to see her like that - she always puts a smile on your face

Kenty I can't imagine how you're feeling. The other ladies have said all I wanted, far better than I could have done.

Lily-Ann is an absolute darling and captures the heart of everyone she meets.

i'm sorry girls, i shouldn't air my crappiness on here


but you are all right....she's the happiest, most loving little girl ever...and after seeing one little girl with Retts in hospital fighting for her life...i realise that i am so lucky...she can't do things, but she's happy, she's for the most part healthy, so i really should focus on the good!

Ah kenty i really cant add anything

just sending you all lots of love xxxx

Ah hun i cant say anymore than every1 else has said! And yeah you are bound to have days where it gets on top of you but i know that you are such a strong lady that you dont let it beat you for long. She is gorgeous and you are such a lovely family you are so special all of you! And anyone that makes you feel different to that arent the sort of ppl you need in your lives xxx big hugs xxx and vent away thats what we are all here for xx

Ahhh hunni, I honestly cannot begin to imagine how upsetting it is for you, but what I can say is that she is such a beautiful little girl that brings such joy to everyone around her and she is a credit to both you and sam who are fabulous parents.

Nothing more I can really add there but I really really feel for you hub and just want to send you a big big hug XX

Ahhh hunni, I honestly cannot begin to imagine how upsetting it is for you, but what I can say is that she is such a beautiful little girl that brings such joy to everyone around her and she is a credit to both you and sam who are fabulous parents.

Nothing more I can really add there but I really really feel for you hub and just want to send you a big big hug XX

Lily-Ann is so lucky to have a family like yours and to be a part of your family and you too are so lucky to have been blessed with her in your life. From the pictures I have seen she is such a happy-go-lucky little girl. She might not be the 1st to do something but she'll be the 1st to do her own things. Sending you a hug hun xxxxxxxx

Sorry you are feeling low. She is a beautiful girl, who is lucky to have such wonderful parents. Just think you will probably feel more pain than she ever will (if that can be of any comfort), she knows no different and is happy with what she has x x x

Just to echo what the other ladies have said, she is an amazing little girl. Of course you're going to have days where it hurts like hell, i want to cry when I think about it, so God knows what it's like for you. I just want to add that you are an amazing woman and mummy, a real inspiration to the rest of us and I'm in awe of how well you cope with whatever life throws at you. Your children couldn't wish for a better mummy xxx

I can't add to what the other ladies have said!


Xx

I'm so sorry hun. My heart breaks for her so yours must be in pieces.

You are all so amazing and are all so lucky to have eachother x x

You and sam are amazing parents if i was in your situation i would crumble. I truly admire you x

ahh kenty, you know we are always here for you to vent to

i cant really add anything to what the others hav put, but just wanted to say how luck lilyann is to have 2 such wonderful parents xxx

Hun

I have to agree with mario, the fact that Lily ann is always smiling in all her photo's is a testament to her amazing parents. She may not have the first's that many little girls do but medical science is always advancing and I pray that one day they will find a cure for Retts.

Thinking of you xxx

mandy wrote:

Just to echo what the other ladies have said, she is an amazing little girl. Of course you're going to have days where it hurts like hell, i want to cry when I think about it, so God knows what it's like for you. I just want to add that you are an amazing woman and mummy, a real inspiration to the rest of us and I'm in awe of how well you cope with whatever life throws at you. Your children couldn't wish for a better mummy xxx

Not nicking but totally DITO cant say it better myself and oh so so very true

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