Friday, February 15, 2008

School

I had a meeting with Emily's vice Principal, Bronwyn. She's such a nice person and I'm so grateful to her for everything she's done to help Emily this school year. It's clear that not enough work's getting done here at home for Emily to go forward so I had to come home and crack the whip. Emily has a lovely home bound teacher who is already overwhelmed with her many other students but she tries so hard to get Emily through her work. Usually after she leaves Emily crashes so not much more gets done. I set some higher goals for Emily and now she'll have to work harder to pass this grade. I know she can do it because she's totally awesome!

During my meeting it was decided that Emily would begin her return to school starting this Monday with 5 days of just Math. This will continue for a few weeks before we add another subject. We'll combine those subjects with Jan and myself home schooling and this way she should do much better.

On Monday Emily goes back at 10:00am until just after 12:00. She wont have to cath during this time and she'll have uninterupted class with her peers followed by lunch with Andy in the cafeteria which will do her good because I feel that she needs to mix with kids her own age not to mention that this is going to make her return to fulltime school easier.

Tuesday, February 12, 2008

Yesterday

The cold weather has been difficult for Emily. Unable to get her legs warm, her pain has increased. I really don't enjoy watching Emily struggle, I would swap places with her in a heartbeat.

There's nothing I can do other than do my best to keep Emily as positive as I can. I sometimes don't feel that positive myself but I hide it well.

Emily's medication remains the same. Vicodin, motrin and tylenol all PRN or as needed but for the most part Emily tries to go without. We've been down that road before and we know that medication isn't the answer. This time last year she was taking so many medications that she had no standard of living, she wanted to die. Since coming off her medication she's struggled with controlling her pain but that struggle was there even ON medication so we'll stick to the plan we're on.

I took Emily to a meeting yesterday where we had to explain about her condition and it was deeply upsetting for both of us. She puts a brave face on but it's hard for her to go into in any depth. When people ask us how we are what do we say to avoid showing the cracks? "I'm fine". Because it's much easier to say that than admit that you wake up everyday with a feeling of dread deep down in the pit of your stomach.

Yesterday I was forced to relive the beginning, the despair, the hopelessness and the horror. I listened to my child describe her life and what she wants for the future and for the first time in ages I couldn't stop the tears from rolling down my face. It does me no good to look back, the focus must be the future.