Brooke has cried herself to sleep a couple of nights. I, too, have had a hard time keeping it together. We fully understand that it could be worse. We know that this disease is one where she won't physically feel any different. It wasn't a Cancer diagnoses, even if it might look like one. We know it could be much worse. Still, it is a difficult cross to bear. This is one that is a big burden for any child to have to deal with. Its even worse for a girl. Kids can be mean. A girl who has always had the best, thickest, prettiest, hair of all of our girls. We always joked that she had a birds nest on her head when she would wake up. She used to brag to her sisters that her and I had the same hair. In some ways, she was like Samson.
While Caroline was aware something was going on, she didn't know the extent of what could happen. Outside of the two spots that we could cover with her other hair, the only other visible evidence of this was her left eyebrow was almost gone. So to this point, she hasn't been effected too much. We didn't want to worry her in the event it doesn't get worse. We also hadn't said anything to her sisters. That all came crashing down tonight. After dinner, Brooke was applying the medicine to Caroline's head when Caroline says "Mom, Reagan said that I was going to have to shave my head. That is ridiculous, why would she say that?" I immediately ran downstairs and cornered Reagan, asking her why she would say such a thing to Caroline. It turns out two of her classmates came up to her and said something like "sorry your sister is going to have to shave her head." Reagan denied it, not knowing what was going on. She then asked Caroline about it because Reagan was caught off guard. We knew it was time to talk to the girls. We decided to talk to Caroline first.
Brooke has an amazing gift in the ability to talk to younger children. It serves her well as a teacher. She knows what to say and how to say it. This didn't stop her and I from crying in the process. Having to tell your little girl that she might lose her hair is not an easy thing to do. We then wanted to bring her sisters up to let them know. It really was a surreal moment telling her sisters what was going on with Caroline. Brooke and I are sitting on the couch with Caroline in between us, the other three girls on the other couch. We were telling them what might happen with Caroline's hair. We are all crying. In between us is Caroline. She has one hand on me and one hand on Brooke. She was rubbing us both, trying to make us feel better. She was leading us. Caroline then went to get us kleenex so we could clean up. After all was said and done, she had one simple request. If she has to get a wig, she wanted one with a purple streak in it.
It was absolutely amazing to see the strength in Caroline. Im sure part of that is because she really doesn't know. Having said that, she talked frankly about not having any hair, what that meant etc. We also talked to her sisters about what that meant to them as well. I gave Reagan permission to "pummel" anyone who says something mean about Caroline. She said, "okay....what does pummel mean?" We gave them a chance to ask questions, and we talked about what the future holds.
Reagan was pretty upset about this. She kept saying that she didn't want Caroline to lose her hair. I went to talk to her when she was getting ready for bed because she was still crying. She asked "Dad, what can I do? I want to protect her, but Im not always with her." She then said, "if she loses her hair, I want to shave mine off too." It was one of the most beautiful things she could have said. She goes "its taken me forever to get my hair, Caroline has always had better hair than me. If she is going to lose hers, I want to shave mine off."
We laughed, we cried, we hugged it out. I should add that Hadley's contribution to the whole conversation was comedic relief. She tooted. Then tried to explain to us that it was okay because it was silent. When then had a discussion about the silent but deadly toots. Thanks, Hadley. Hopefully it doesn't come to us shaving our heads. After our talk tonight it became abundantly clear to all that Caroline won't be going through this alone. In the end, we can't do much more than hope and pray. We will see if diet has anything to do with it. If it does, then there will be some significant changes coming to what we eat. None of us care about that, we all want to do anything we can for Caroline. Unlike Samson, Caroline's strength (and beauty) does not rest with just her hair. Her hair, or lack there of, won't change that one damned bit. She seems to really understand this.
She has always surprised us. She can on one hand be afraid of her own shadow and on the other show us unbelievable strength. She is such a blessing.
