It was one of those days today where I just kept crying over and over again. I noticed that Brylee is having some anxiety issues the other day. I talked to the doctor about it today while we were in clinic. The doctor said that is why she is picking her lips till they bleed. It's because her world has been turned upside down and she doesn't understand it anymore. She's been picking her lips, won't go potty in the toilet, won't talk, won't let anyone hold her but me, and only watches one movie. The doctor said that she is regressing back to a time when she felt comfortable. She said to just let her do her thing and she would eventually come back. So I cried the whole time we were talking about that because I feel horrible that she is under that much stress. I cried again when my dear friend told me what her sweet little boy said today. He has Type 1 Diabetes like Bryker and they are friends. My friend was telling her little guy about Brylee and how she is sick in her brain. He got all excited and said she needs to go to the doctor and get a shot in her head and then she'll be better. My friend explained to him that that wouldn't work. He then said I'll sell all my toys and give Brylee the money so she can get better. He then proceeded to pack up all his toys and get ready for a yard sale. As my friend was telling me this story I started crying! It is so sweet that even the littlest person is on Bree's team and is praying for her. I was listening to my Hilary Weeks CD on the way home from school today and once again started crying. I love the first three songs on it. The first song talks about only having today with the one you love and what you would do to cherish today. I'd hold you and listen and I'd let the dishes sit in the sink. I'd tell you I loved you over and over. And for once I"d just let the phone ring. Then I'd remind you of forever and how our love would never change. I'd memorize every detail of your face. I wouldn't let excuses get in the way. If I only had today. This is how I feel about Brylee. I haven't been keeping up on laundry or really doing anything around the house. I've been doing nothing but sitting with her and I'm okay with that. I want to memorize everything about her so I'll never forget it. The next song on the CD talks about making mistakes. I made mistakes today and I'll probably make mistakes tomorrow. I couldn't save myself no matter how I beg or borrow I'm gonna need his grace. I think out of this entire trial this is what I'm most scared about. I'm not okay losing her and have the heart ache right now but I'm so worried I'm going to mess up and never see her again. I know that when she does die she is going to go straight to heaven and live with our Heavenly Father for all eternity. I'm so frightened that, since I'll still be here, I'm going to do something stupid and I won't go to heaven and I'll never get to hold my baby girl again. This is what bothers me most. How am I going to be able to do the rest of my life with that burden on my shoulders? I feel so unworthy. The last and finally song is exactly how I feel today. I believe that everything happens for a reason. We're not just tossed by the wind or left in the hands of fate. But sometimes life sends a storm that's unexpected. And we're forced to face our deepest pain. When I feel the heartache begin to pull me under. I dig my heels in deep and I fight to keep my ground. Still at times the hurt inside grows stronger and there's nothing I can do but let it out. Just let me cry. I know it's hard to see but the pain I feel isn't going away today. Just let me cry Till every tear has fallen. Don't ask when and don't ask why. Just let me cry. Today has been so hard. I do really good for about a week. I can keep it in and be strong for a while but then it just comes pouring out. There are days that I just need to cry.
Brylee Olson was diagnosed with a DIPG, an inoperable brain tumor (infiltrating brain stem glioma) on Wednesday, March 6, 2013. This is a blog for her and her fight to be in the 5% who survive 3-4 years. Or the rare chance of complete survival.