Monday, June 23, 2008

The school year is winding down and we are preparing for our Disney trip. Yes, DISNEY! Have I mentioned this before? When Hannah was getting close to the end of treatment, we started talking about what she wanted to do when this nightmare treatment was finally over. She wanted two things-a big party to celebrate and a trip to Disney to swim with the dolphins. We did start planning her BIG party, but it became quickly apparent that this BIG party was going to be BIG bucks. I told her we could do the big party, but we wouldn't be able to go to Disney right away. Disney and the dolphins won over, so we're off! This Saturday we head to Mickey Land for a week. When Hannah found out it would just be our family-well that wouldn't work for her. She invited Grandma and Grandpa and Aunt Susie and Sydney. Everyone said YES, so it will be the 8 of us total.

Wish us luck! Why? Well I haven't talked much about it yet. Everyone looks at our family from the outside-everything looks "normal", everything looks "fine." Now-if you're a cancer parent you know what I'm going to say next. It's not really fine. Hannah's brain just doesn't function the same way it used to-or the same way that other kids' do. She gets unusually emotional over small things, she gets frustrated easily, she cries every day. This has been an issue all year in school, since she is crying in front of her classmates on a regular basis. She said it's embarrassing, but she can't control it. She told me it just comes very quickly and then she cries before she can stop it.

It's not just school either. I was upset after her birthday party last week. It was just confirmation for me that things are and will remain different from now on. Did she have a good time? She did, except for the crying, she said. She was upset when they started to play miniature golf since everyone was going much more quickly than she was. The girls were excited, and were playing and having a good time, but Hannah was left behind. She was crying and throwing her golf club down saying she wanted to quit, no-one would wait for her and asking why she was always the last one done. Oh boy. Thanks to Sascha's mom for helping bring the group together with me. I'm afraid at this rate, Hannah won't have any good friends soon, as she gets older and kids get more and more critical of each other, scared of the differences of others.

Next Hannah got hurt on the big water slide. I don't know what happened, she was going down the slide which was very big, and it seems that when she came down near the end, her body compressed, rather than supporting itself. She was crying and screaming her chest hurt. I had to jump on and go get her. She is still complaining that it hurts, and Dave was wondering if maybe she could have cracked a rib, her sternum? I'm waiting for a response back from her oncologist team regarding their opinion on an xray.

Tonight Hannah happened to see some clay animals that she made last week that I threw away (hey, I can't save everything.) She was so mad, she wouldn't talk to me, and she ran in her room crying. I got them out, but the dog was missing his ears. She spent the next 45 minutes trying to put ears back on, crying the whole time. When she got that done, the tail fell off, so the whole cycle started again.

These are just a couple examples of the issues. Her short term memory is noticeably deteriorating. A couple weeks ago we had been at our regular Friday night gymnastics class. About 3 minutes after we were in the car and driving away Hannah asked me "where were we?" Colby just looked at me with this perplexed look on her face. Hannah is quite good at writing things down now to remember them. That leads to notes all over the house, and getting up at different hours of the night from bed to write something down. Last week after doing her homework she wrote a note that said "tell Mrs. W. that I didn't get the math tonight." Good strategy I guess.

It has been a bit difficult explaining it to Colby. I just tell her that Hannah's brain is different and it doesn't work the way it used to, or the way it should sometimes. This sometimes leads to inequities between responsibilities they have, leniences given to Hannah that aren't given to Colby at times. I try hard to watch this, it's not fair, although sometimes necessary. Hannah had been getting so frustrated and hitting her sister lately. We tried to work out a strategy with Colby that each time Hannah hit her, Colby would write it on Hannah's chore chart. This led to Colby writing the hits down, with Hannah standing next to her, getting more and more upset, finally stabbing Colby in the arm with a pen after Colby wrote down about 10 hits. Obviously this strategy didn't work.

So there is my woe for the evening. Things appear normal on the outside, and that's all good, but on the inside, we're still grieving the loss of a normal life for Hannah with no more crying days, normal friend relationships, fun birhday parties, normal eating, emotional stability, just everyday kids things etc., etc., etc.

♥♥♥ Kim ♥♥♥