Depression

[Guest guest]

I'm just wondering if folks here have any tips or thoughts on how to deal

with this? Perhaps it is different for me, since it's my daughter not

myself that is dealing with this disease, not sure how that might effect

coping mechanisms. I'm finding this is truly the hardest thing I've ever

had to deal with emotionally (and it's not like I've never had rough stuff

to deal with before, I have been through a lot) and I must admit I am NOT

dealing with it very well at all. I can't go to sleep at night because all

I can think is my daughter is in pain and there is nothing I can do about

it, and then I do not want to get up in the morning because I don't want to

face the reality that my daughter is in severe pain and there is nothing I

can do about it. It was less than a year ago I was watching my daughter

climb up a very tall tree and I had to turn my back and walk away from her

because while I knew she would be cautious as her mom I worry she might get

hurt, so my instinct is to have her feet firmly planted on the ground and to

never take any risks. now I watch my daughter struggle to make it up the

sidewalk, or cross the floor without falling, and I have to turn away

because I am so scared for her just doing the normal 'safe' things and it

breaks my heart! She has been dancing ballet since she was 4 and had been

doing pointe work for a few years before this struck and so many times I

would worry about that, she would be so sore and dancing on bloody toes,

etc., but the joy I saw on her face every day after two hours of practice

and it wasn't enough, and especially the happiness she found in performing,

I felt she was so blessed to have found her passion, I've never had that,

known exactly what I wanted to do and what made me happy and she many times

told me how incredibly fortunate she was she got to live her dream of

dancing and she also enjoyed acting and sparring, she would get so bruised

up and never minded the pain, so I know this arthritis must be really bad,

but it just kills me because she has always been so physical and now she

can't even turn a door knob by herself and can barely walk. it doesn't seem

fair to have this all taken away from her. Her friends have stopped

calling. they would always be asking, " are you better, yet? Can you come

play again? " .all the things they did involved a great deal of physical

activity because that's what she enjoyed, she's never been a sit still kind

of girl. We kept thinking this is something that would just go away soon we

just had to get through this but more and more we are starting to think

maybe it won't go away. the first time I even realized that was a

possibility was after going to see the pediatric rheumatologist and after

that visit I spent a week and a half crying in my room. I mean this is just

terrible, I can't even imagine how hard this must be for my daughter and I'm

sure the last thing she needs is an absent mother who can't even get it

together enough to make breakfast for her and her siblings! I talked myself

out of that, but I feel it coming on again and we keep trying new things and

it all feels so hopeless. I need to be better and stronger, but all I do is

try not to cry. I find myself actually *avoiding* my daughter because it

hurts so much to see her fingers so swollen, her joints are bigger than her

father's, and to see her sitting there all the time and then watch her

struggle in excruciating pain just to get up or rearrange herself and I

know she is bored out of her mind and I need to find things for her to do

but I CAN'T FACE IT! She deserves better. I find myself grateful for the

cold because with the long sleeves and long legs I don't have to see her

swollen elbows, knees and ankles. seeing her come out of the shower is pure

torture, I just want to scream at the world. I just can't accept this

reality, and I know I need to.

So, I don't know, is this something that will just always come and go, or is

it just so terrible right now as we come up against the realities of the

situation and it will eventually get easier to deal with? I wonder too about

letting my daughter know how I feel or putting up a front. initially when

this all first started I made very light of it while all the time I was

completely freaking out and she later said how nice it was to have her pain

and symptoms validated once we saw the specialist and so I felt bad that

maybe in my efforts to make her feel this was nothing to worry about I may

have made her feel I wasn't taking her seriously. Maybe now she thinks I

don't care? But I feel if I let her know how much this tears me up she will

have a harder time dealing with it herself. I know that I find great help in

my husband's strength and when he gets upset I feel completely lost. It's

hard to know the right thing, and it's even harder to feel maybe there is no

right thing, it all just feels wrong.

Anyways, thanks for 'listening', if anyone has any thoughts I'd appreciate

it. I don't know if I need a shoulder to cry on or a good reality slap to

get over myself. I know there is so much in the world I can't control, I

can do nothing about, but I always thought I could at least be there for my

children and make their lives great, but now?....

Sharon