UP then down

The morning after Kourtney sent her happy, positive blog she woke up in distress. Her right eye was really sore (corneal abrasions are a problem with EB, and probably one of the most painful symptoms). Kourtney wanted to stay home, and in the past I would have let her, but instead we medicated her with pain meds and antihistamines and sent her to school. My heart ached for her as even using the computer, watching TV or playing with her iPod touch caused a lot of pain. Yet I knew that going to school would be better than sitting at home all day. She did OK at school, and after she went to one of her friend's house after her school with her electric wheelchair (thanks to our cloudy overcast weather). She really is loving being back with her friends and is loving the independence we are giving her. When she got home today, she fell asleep at 6:30 in her recliner chair, Todd got her ready for bed at 8:00 and she continues to be asleep.

Today I went to Children's to pick up supplies and drop off some swabs (I even managed to "fit in" a shopping trip). I thought it was rather amusing that the 3 different departments in the hospital I went to, I didn't have to ask for anything. I walked into the clinic and the receptionists, and nurses just handed me bags that said KOURTNEY on them. I even ended up having lunch in the back room with the receptionists in the plastic surgery office. I don't know if it such a great feeling to be so recognized at a hospital, although I must say it makes life a lot easier.

Shaelyn and I watched a movie tonight. It has been so wonderful to spend a lot of time with her. She said to me tonight "mom I like you as my mom, not as Kourtney' nurse", because it was all about Kourtney.

During times like these (eye problems, esophagus problems, infections, etc), I find myself in despair, especially when I hear Kourtney crying in pain. I had to physically remove myself from her the last 2 days because I feel her pain. I have learned through counselling that this is OK, and very important that I recognize what my triggers are. There is always going to be something and I have to find better coping skills. For years I was not able to walk away because we did not have the funding for a full time caregiver. I know that I was full of resentment and tried so hard to control her disease because I did not want to see her suffer. I know after the "infamous tub incident" I felt so guilty for not advocating for Kourtney that I became overprotective of her. I felt that I didn't know how to look after her and I didn't know how to show others how to look after her.This led to despair and severe depression. I now have not done a dressing change in over 6 weeks, I have no idea which area is blistered, and what is new and what is old. I simply enjoy looking at her beautiful face and talking about the girl things in life. What a huge change. I do know that eventually I will have to start assisting with the dressing changes, but Todd has recognized that it is a two person job now and I will not be left alone to do them. So if we don't have a caregiver around, we will do them together but make sure Shaelyn is taken care of during that time.

I have had to learn that there is nothing that can change the severity of Kourtney's EB, no matter how hard we fight it. I don't think I can change the pain I feel when she is in pain. The one thing I can change is burnout and allowing myself to take a break without feeling guilty. Yesterday, I just enjoyed the quiet drive into Children's Hospital and enjoyed my shopping trip at Metrotown. Todd told me he was glad that I was able to have a day to myself. It felt great to come home to Todd and Shaelyn's empty Slurpee cups, (Friday is Slurpee day), and knowing Kourtney was at her friend's home. I am enjoying this new life. I start work tomorrow, and am excited to get back into it!! The best part will be coming home and not having to be involved with the dressing changes, but to spend time with Shae, and tuck Kourtney into bed.