Sunday, November 8, 2009

Things you never want to hear your kid say

Reflecting on the past week made me realize that things have recently shifted in two important ways. For the first time in 10 weeks, I felt okay more than not, and our 'new life' started to feel normal instead of pained and awkward. I guess it is a testament to man's capacity to adapt to new environments and Emily's capacity to continue moving forward with her recovery.

Early in the week I read a great deal of a book called 'Skills Based Learning for Caring for a loved one with an Eating Disorder'. It scared the hell out of me because there seems to be so much to learn but it gave me an idea of how to approach Emily on a few issues. That night I tried to engage her in a conversation to get her to rate herself on a scale of 1-10 on how ready she is to look after her nutritional health. At first she rated herself a three, but then when I asked her to walk me through a day of feeding herself and she started listing what she would choose to eat for breakfast and lunch she realized she was actually higher than a three. I think she is maybe at a six.

Then I tried to get her to talk about her 'Ed' eating rules but she was really not into having that conversation. I tried to convey that eating rules are not healthy and are keeping Ed going and that talking about them helps to lessen their hold over her but I am sure in her head she was thinking yadda yadda yadda mom! I was heading out to go to my first choir rehearsal since August and she was reluctant to let me go. She is like an eight year old afraid to let her mom out of her sight. I offered to stay home so we could talk more about stuff and she laughed and said she could handle me going out if it meant not having to talk any more. I mentioned her clinginess and separation anxiety to the team and they reassured us that reverting to previous anxieties is a normal reaction but that the skills she is learning to deal with Ed can be used to deal with any form of anxiety. Phew, I hope that comes true.

We had a good meeting with the Team on Wednesday. Emily's weight was up again which is good because if she gets sick this winter and loses weight she will have some wiggle room. So I was surprised to find that Ed felt the need to join us for dinner that night. But I realized it was a chance to use my newly learned 'skills' to deal with him. I think he surfaced to test the waters because Emily asked for, and was granted, permission not to be monitored for purging after meals any more. As much as healthly Emily wants that privilege she knows that Ed is still a threat so she let him out of the box at dinner to see what would happen. I was really glad that I was able to step up to the plate and state that I believed that her not finishing dinner was Ed not healthy Emily. It is always hard to initiate a difficult conversation because my natural reaction is to avoid it and make excuses for her not finishing her meal. And this time I remembered to tie the need to get rid of Ed into her goal of taking up water polo in January so that it wasn't looking like a power struggle between Ed and me. Can you tell I was pleased with myself?

The following evening, Emily had four KVA (school) friends over for dinner and fifth to watch a movie. Two of them stayed for a sleep over which meant that Emily had to eat several times in front of people. She said it was really hard but since she has been eating in front of them at school for a while now and because she was rewarded with the fun of socializing she was able to do the hard work of eating so that she could enjoy the rest of the event. Her friends from KVA were delightful, a big change from Shambhala.

So all in all it was a really good week and I was starting to let down my guard a bit when out of the blue Emily started talking to me again. I was delighted to hear her say that she is really enjoying feeling well physically and that she is starting to use and to trust in the techniques and tools the team are teaching her for managing Ed. I wasn't ready for her to tell me that in the week before we found out about Ed, she had resigned herself to the fact that she dying and wouldn't live past the end of the year. I can't begin to describe how mind boggling it is to know that my highly intelligent, loving, warm, compassionate beautiful daughter was so ill that even with the full conscious knowledge that she was killing herself she was unable to ask for help. When I asked why, she said it was because she thought it was absolutely hopeless and she was too tired to even talk to me about it. So I will not be letting my guard down any time soon. You can't when you are dealing with a disease this deadly.

But the rest of my life starts today with the full knowledge and fear that it is more vicarious than I want to acknowledge. So now I am plotting my return to living. This week I start to plan out how to integrate working, singing, socializing and exercising into our new life style of meals, appointments, discussions and schleping Emily around. And being the 'planner' that I am, I will enjoy this project I will work on re-energizing myself with some rest and relaxation.

Gotta run and get lunch for my poor girl who is feeling yucky and sore from her H1N1 shot.

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