A massive flair up ...

Unfortunately yesterday was a terrible day. After such a positive weekend full of highs came the lowest of the low. Emily spent the day in agony ...

For a few days Emily has complained of neck pain and yesterday her pain was all over. After PT at 3:00 pm yesterday Emily just never recovered. Last night I blew up the air bed and put it onto my king size bed, with pillows under it for support she floated on a cushion of air tiny in the very centre. Finally, after Emily had a complete meltdown I went and got Emily's best friend Andy, I don't know what I would have done without her because after 10 hours of not being able to take the chronic pain away I was very emotional and fit for nothing. Andy sat with Emily and Pete sat with me talking me through my fears.

Emily told me last night that she feels robbed of her childhood because she watches other children play carefree and she has to many responsibilities. She has to cath 4 times a day which is already a lot of someone who's 11 and she has to work hard to keep mobile and push through a wall of pain each day. Every morning she wakes up with new pain and she has to deal with the feeling of panic because she's afraid that the RSD has spread. It's been a while since she questioned why she was alive but last night she told me that she didn't feel that she could carry on like this forever.

My own fears surface when Emily melts down. I fear for Emily's future. It's unlikely that she'll ever lead a normal life. From what I've seen her future is in real jeopardy. From as early as I can remember Emily has wanted a little boy who she's going to call Dillon. She wants lots of children, she wants me to be a grandma and to live next door. She wants to work with special needs kids but will she ever be able to keep to a schedule. I don't know what the future holds and I try so hard to be positive but from what I've seen the future looks very scary.

Emily still has no plan for school in August. Her current school doesn't want to hold her back despite Emily completing less than 2 months of 6th grade. Her 7th grade school feels that it's not in Emily's best interest to put her up to a new grade because she has no Math foundation. Because Emily is the youngest in 6th grade I have no problem holding her back but I feel that the school has been so horribly unsupportive that I don't trust them to keep her safe and mentally healthy. Her teachers last year were lovely and they try to understand Emily's condition but I have to go through the principal and so much red tape BS that it adds so much stress. Why don't they understand that families like mine already have so much stress that just keeping it together is a challenge. Why add more??? Although I don't want to I think Pete's right and homeschooling may be the only option. I feel that home schooling will take away a huge component to Emily's recovery, her peers, her chance to have a normal life so I'll hold off on that until I've looked into more options.

Tom is struggling. Thankfully Karen took Tom at short notice last night and he slept over with Aaron. He really needs a break and some fun away from here because it's just way to intense when Emily has a flair up. Luckily for all of us I have several close friends who can step in if I need them. My family has been so unsupportive it's just sad and neither Emily, Tom or I will forget who helped and who chose to be absent.