Frustration

I feel like my last couple posts are full of negative things. I can't wait to be able to write about a "good day". Unfortunately, today is not that day. It was another rough one for Alexis. She was able to go to school this morning. She was feeling good and hoping to stay the full day. A little after 11:00am I got the call to come pick her up though. I felt so bad because I know how badly she wanted to stay all day. When I got to the school Lex looked miserable. She was in so much pain again, still in her stomach. She told me it was worse than yesterday. That broke my heart into pieces. I hated hearing that she was in so much pain and I wasn't there for her. I hate driving away from that school in the morning knowing I won't be there to look after her. She told me that it was hurting while she was still testing but she didn't want to stop - she wanted to just get it over with so it was one less test she would have to make up next week.

While I was at the school I talked to them about all this school she is missing. I wanted to make sure they were okay with it. I told them how she would be finished with her treatment next week and that it should get better at that point. They were very supportive and told us not to worry about it. She will have to make up the testing she is missed but other than that nothing is that important right now. I also talked to Lex's teacher today. She assured me that Lex isn't falling to far behind and that she isn't going to make Alexis do all of the work she is missing - only the important things.

So we had set a new goal - for Alexis just to get through testing the next couple mornings. I am going to plan on picking her up when she is finished. If she is feeling okay and can stay all day, great - but I will make sure I am around and ready to get her if that phone rings. Luckily, I live about 5 seconds away from the school. I'm glad I am so close to her and even more glad that I am a stay at home mom so I can be there for her within minutes. (Thank you Scottie!)

We have found that when these stomach pains come the only thing that help it is laying down. So Alexis spent pretty much the whole day laying down. When it was feeling better she still laid down just to prevent it from coming back. It's been coming and going more frequently now though.

Lex had a softball game tonight. Actually, it was a double-header. There was no way Alexis was going to miss it. She wanted to play so badly. A little while before we were supposed to be there her stomach pains started up again. They weren't the worst they have been, but they were bad. She still went but wasn't sure if she was going to play. She got a little playing time in but wasn't feeling better until the second game and by that point it was too late to play. Once again she had to watch her team from the side and it just broke my heart. I know she has to think to herself "why me" at those moments , when she is watching all of her friends out there enjoying themselves and playing the game she loves. She never says it out loud though.

I felt so frustrated sitting through these two softball games. I just wanted her to be able to play. I wanted her to feel like an average 9 year old kid again. I wanted her to not have a damn PICC line in her arm. I wanted her to not be getting such a strong dose of this medicine. I wanted to fast forward time...or rewind it to the day she got bit by that damn tick. That opens up a whole different world of emotions for me though. Why didn't she have bug spray on her that day? Why didn't I check her for ticks that night? Why didn't I ever notice the bulls-eye rash that the lyme disease causes? And the question I ask myself a hundred times a day - WHY DIDN'T THE DAMN TICK JUST BITE ME INSTEAD?!?!?

I know I said last night that I need to just accept it all, come up with a new normal for us and roll with it, but I'm having a really hard time accepting all of this. I'm full of so much anger and hatred right now. I hope I can snap out of it and pull myself together. I need Alexis to have just one good day - just one. It will give me so much hope and I'll be able to get out of this little funk I'm in.

Prayers are needed and very much appreciated.