Today was a really difficult day for Ellie and for me. Ellie did fine going to school and then gave me a glimpse of attitude when I picked her up. She was really good during lunch (still a very picky eater). Then everything started to make a turn for the worse at therapy. During speech she started to cry a little so I left the room. When the therapist came out she informed me that Ellie told her that she is really sad all the time. She is sad because she has to go to the doctors so much, she is sad because she has no friends at school, and she is sad because mom is on the phone all the time. My heart sank. I don’t want my daughter to be sad but it is necessary for her to go to the doctors. And as far as friends go, I know she has girls at school that talk and want to be her friend it’s just Ellie is so shy. To address the issue of me being on the phone all the time. It’s really difficult because I have phone calls to return daily and appointments to make. I try to do all the making of phone calls while we are driving to make it easier. But I think I am just going to have to make more of an effort.
Then immediately following we had a Physical therapy and then she became increasingly difficult. She began to not only cry but SCREAM. She refused to do anything at all not even walk. So I took my seat back in the lobby while the therapist worked with her. (boy do I wish they had an alcohol cart, I might take up drinking after today, jk) Well the screaming got so loud that I could hear her in the lobby over the TV. She screamed for me. I peeked in the window and saw that the therapist had to drag Ellie across the steps. She was refusing to do anything. It was so difficult hearing her in the lobby screaming for me. Therapy had to be cut short again. The therapist walked her out of the office into the hallway (or should I say dragged) Ellie than continued to hit me as we walked out. I had so many eyes on me. I feel like maybe I should make T-shirts that Ellie and I can wear. One for me that reads “My daughter has brain cancer, don’t judge until you have walked a day in my shoes” and one for Ellie that reads “I have had two brain surgeries; I have Chemo each week, and have been through hell. I’m a little cranky wouldn’t you be too.”
I was trying my best not to cry as I’m dragging Ellie out of the Medical building. She was still hitting and screaming at me. I have been through this time and time again with Jake but I never ever felt so sad before. I have known no difference with Jake. He was born with S.I. and we are used to the behavior and know how to manage it. As far as Ellie goes it is the hardest thing trying to explain to people that this is not my Ellie. She was the most well behaved and always wanting to please type child. Now she has done a 180 and not that I don’t love her just as much but I do wish for hers and my sake that she finds peace soon with all of this. It makes it so much harder to do everything as she fights and struggles through it every step of the way.
On a more positive note she did do a good job with tutoring today. I guess I just need to focus on the good moments and try to block out the bad ones. I just wish Ellie could do the same. I cannot tell you how many times I prayed to god today “God give me strength.”
Tomorrow is the second round of Chemo please pray tonight that it goes well.
A mother with a battle ahead of her.