“Rock bottom became the solid foundation on which I rebuilt my life.”

Sun_Addict

Wise words from teafor2 there. Can't really add anything others haven't already said. Just take each day as it comes and don't forget to take care of yourself too xx

teapot2

I know its really hard when DD's health and the tests etc are out of your control and it sounds like a particularly difficult patch at the moment. Hope they can accommodate your request to do the tests when school goes back.

Glad the tenancy is in your name now, that gives security which is so important. Glad you managed a sleep in the new bed and hope your appt in town goes well and the smalls enjoy their museum visit

WannabeFree

I know moaning doesn't change things about DD just good to write down sometimes makes me realise how silly stuff sounds when I read back

Thank you again I do appreciate it
x

beanielou

You are not moaning.
You are saying it as it is.
Remember you are dealing with all of this on your own.
Keep plodding xx

teapot2

Not moaning, its how it is and good you can write it down especially as you are dealing with a lot and having to make decisions yourself - not easy.

You have a lot of people rooting for you :cool:

beanielou

Yes, as teapot2 says you have lots of people rooting for you.
Sending you lots of positive vibes xx

teafor2

I don't think you've moaned or said anything silly. You're dealing with a situation regarding one of your children that you have no control over and it's perfectly normal to worry. Just try not to worry too much until you know what you need to worry about.

MatyMoo

If I was in your shoes I don’t think I would cope as well as you do and I am sure I would be moaning a darned sight more than you ever do!

You deal with a huge amount of responsibility on your young shoulders and you do an amazing job - never forget that. Just look at the smalls, how happy, kind and loving they are, never asking for the moon like other kids do. You did that so hold your head up high and be proud. I love to hear about them enjoying the simplest things in life.

As for littlest, it must be heartbreaking for you to hear her voicing that she is different and doesn’t want to be. Are you able to turn it around so that she thinks she is extra special?

Whatever the outcome of the tests you will all continue to live and care for her as best as you can while making memories for you all. Really hope you can manage that holiday........maybe the DLA will come through and make it a reality.

Lovely to hear that you got to sleep in your own bed

HairyHandofDartmoor

teafor2 wrote: »

It's hard on everybody isn't it, especially DD who is obviously becoming more aware of her limitations at times. If they think it might be something else now and the medication she's on doesn't seem to be making any difference I wonder if they might be able to take here off some and get back to basics - sort of starting over.

I know it's easy to say but try not to worry too much about the bigger picture until you know for sure what you're dealing with. There's enough going on in your day to day life without thinking too far ahead. Otherwise you'll drive yourself crazy with what if's. xx

I can't say anything better than this. I hope you get some answers for DD soon. In the meantime, you are a loving mum who is looking after her and making her as happy as it's possible for her to be. Go on your holiday and have a good time and create special memories. You all deserve some happiness.

And try not to worry by looking too far into the future. Take each day as it comes and be in the moment.

Cherryfudge

WannabeFree wrote: »

Wish there was someone else to make the decisions needed

That is totally understandable. It really helps to have someone else in charge, or at least to talk things through with. Could the hospital suggest someone, maybe a hospital volunteer or chaplain, who would just be a listening ear? Sometimes just putting things into words is helpful - so could you talk to or write to yourself (not as off the wall as it sounds)?