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.
Well, I am crying reading your post ;) Even though you don't always feel like it - you are one amazing, strong and smart mama and don't let anyone or anything ever tell you different. We all make mistakes and we all sin - thank you Jesus for dying on the cross to forgive our sins. Believe in Him and do your best to live right by him and you WILL be in heaven someday and holding that HEALTHY baby girl again.
Do you remember when you told us at TaeBo about the time that creepy guy followed you in the car, then he stopped and you started getting ready for a fight? You were so collected telling us that story and I was so in awe of you and wondered if I could possibly be that brave. Well, I have this mental of image of you on that dark street, starting to undo your pack and getting ready for a fight. Except it is not the creepy guy you are after but Brylee's cancer and you are going to kick its trash because although it might make you guys angry and crazy right now it can't touch her perfect soul or your family's eternal bonds and you will be there triumphant to meet her again. You'll make it. Just the fact that you worry about it means you will. And she'll be rooting for you the whole way, the way you root for her now.
Thank God that it isn't up to us as to getting into heaven. He has already paid the price. Your life doesn't have to be perfect. There is no way to be perfect enough to get into heaven. If there was then there wouldn't have been a reason for Jesus to come to earth and to die for us. Hold onto that. Remember that you don't have to be perfect. He never expected us to be and he doesn't expect you to be now. Love her, hug her, cry. You are an amazingly strong woman and your heart is full of love for her. That is all you can be right now. And its okay to feel weak and not feel good enough. I can't even begin to understand. But know that you are a great mom and wonderful woman.
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.
Well, I am crying reading your post ;) Even though you don't always feel like it - you are one amazing, strong and smart mama and don't let anyone or anything ever tell you different. We all make mistakes and we all sin - thank you Jesus for dying on the cross to forgive our sins. Believe in Him and do your best to live right by him and you WILL be in heaven someday and holding that HEALTHY baby girl again.
ReplyDeleteDo you remember when you told us at TaeBo about the time that creepy guy followed you in the car, then he stopped and you started getting ready for a fight? You were so collected telling us that story and I was so in awe of you and wondered if I could possibly be that brave. Well, I have this mental of image of you on that dark street, starting to undo your pack and getting ready for a fight. Except it is not the creepy guy you are after but Brylee's cancer and you are going to kick its trash because although it might make you guys angry and crazy right now it can't touch her perfect soul or your family's eternal bonds and you will be there triumphant to meet her again. You'll make it. Just the fact that you worry about it means you will. And she'll be rooting for you the whole way, the way you root for her now.
ReplyDeleteThank God that it isn't up to us as to getting into heaven. He has already paid the price. Your life doesn't have to be perfect. There is no way to be perfect enough to get into heaven. If there was then there wouldn't have been a reason for Jesus to come to earth and to die for us. Hold onto that. Remember that you don't have to be perfect. He never expected us to be and he doesn't expect you to be now. Love her, hug her, cry. You are an amazingly strong woman and your heart is full of love for her. That is all you can be right now. And its okay to feel weak and not feel good enough. I can't even begin to understand. But know that you are a great mom and wonderful woman.
ReplyDeleteHugs! Dana