- thank you for reminder

[Guest guest]

-----Original Message-----

From: K@...

>the Lord will lighten your burdens when you think you can't take it

anymore.

Thats where I am at right now......cant take it any more. Yet I know I

have to, there is no choice, and I love Hannah, and yes I know God has it

all under control, and the rest of the family need me to cope. But right now

I am so afraid of not coping and making life a misery for others, that it is

all about to explode. Some days I am so up beat that no one would know, and

that is my natural disposition. But inside it is eating me up to the point

where I am dreading being left without another adult around while Hannah is

at home. I feel the constant need for immediately available backup and I

cant face the smallest of problems with Hannah without getting cross and

impatient with her, and that is so stupid because she can't help any of

this.. I think perhaps it has all been brought to a head by her recent

surgery and the pain and discomfort of the brace she now wears. I am just so

tired of one issue being fixed and another one raising its ugly head. It

just never ever stops. And the worst thing is that I know this is for the

duration of Hannah's life. There is no way out except when she dies and gets

her perfect body in Heaven.

, what you say is so profound at times and I love to read your

emails. I trust the Lord but, to be honest, I dont know if this burden will

be lightened. I just have to carry it because its the job He's given me, and

somehow He has enabled me this far. I get lots of practical support, but

little emotional support except from the people on this and other lists. My

husband gets up at night to Hannah, and tells me to take sleeping pills to

get a good rest. He also told me " you just have to cope " , which is true, but

a cuddle and some sympathy would have gone down better. It's like I dont

have permission to not deal with all this, and I am expected to just keep on

going.

If you've read this far, thanks. Today is just a bad day, and I know I

can write here and be honest without being criticised or thought to be

weird. I am sure many of you can identify with what I am writing here,

because you struggle the same way as me, and although I dont like to wear my

heart on my sleeve, it is helpful to " get it out of your system " to others

who understand, and I have found that being honest about how I feel allows

others to also feel free to express their feelings. Sounds all very

touchy-feely but it just seems to work that way.

Got to go and wipe my eyes.

Thanks for being there everyone.

- Melbourne, Australia; mum to Hannah, (3yo; polymicrogyria,

uncontrolled complex partial epilepsy,

ketogenic diet since 6/00, spastic quad.cp, cortical vision impairment,

possible hearing loss, swallowing and respiratory issues, non-verbal, global

dev. delays, bard button and a brilliant smile)