I had a really hard day today. I guess it started with a weird thought I had this morning. For whatever reason, while I was driving to school, the thought that Brylee wasn't going to be here for Christmas crossed my mind. I'm trying to have faith and hope that she'll last longer than that but for whatever reason I keep having that thought. Of course, me being the teary mom, started bawling my eyes out. It was the start to a very hard day. When I got home from school I noticed that Brylee had pulled her NJ tube out (her feeding tube). This was really horrible because an NJ tube is different from an NG tube. An NG tube goes to the stomach whereas an NJ tube goes to the intestines. In order to place an NJ tube Brylee had to have a serious of xrays to make sure that it goes into the right area. While we were in the xray room Brylee started crying and burrowing her head into my shoulder. I asked her what was wrong. She looked up at me with big round eyes and said she was scared. Of course I started crying again! It's really hard watching her go through all these awful procedures. It hurts my heart that someone so young has to be poked and prodded all the time. She is constantly terrified and clinging to me. I can only imagine having your perfect little world turned upside down and not understanding any of it. My whole heart goes out to her. As I was crying on my way home from school I was listening to Hunter Hayes and his song Cry With You came on. It explains my feelings perfectly!
When you try not to look at me
Scared that I'll see you hurting
You're not hiding anything, no
And frankly it's got me worried
Nobody knows you better than I do
I keep my promises, I'm fighting for you
You're not alone
I'll listen till your tears give out
You're safe and sound, I swear that I won't let you down
What's hurting you I, I feel it too
I mean it when I say
When you cry, I cry with you, with you
I'm not going any place
I just hate to see you like this
No, I can't make it go away
Oh, but keeping it inside won't fix it
I can't give you every answer that you need
But I wanna hear everything you wanna tell me
You're not alone
I'll listen till your tears give out
You're safe and sound, I swear that I won't let you down
What's hurting you I, I feel it too
I mean it when I say
When you cry, I cry with you, oh
Yeah, I cry with you
You need love tough enough to count on
So here I am
You're not alone
I'll listen till your tears give out
You're safe and sound, I swear that I won't let you down
What's hurting you I, I feel it too
I mean it when I say
When you cry, I cry
I mean it when I say
When you cry, I cry with you
I'll cry with Brylee till her tears give out. I'm fighting for her with all my strength. When she cries, I cry. When she is scared, I'm scared. When she is hurting, I hurt. I want to take this away from her but I can't. I feel so helpless.
My heart breaks for you and Brylee. I'm so sorry that this fight that no one asks for has been thrust into your lives. It's especially difficult to understand when person called upon to fight for her life is a child. You, Brylee, and your family will be in my most heartfelt prayers and positive energy will stream from me to you until Brylee becomes part of that 5%.
Sandy Ellis Founder Fight Like a Girl Foundation Fight Like a Girl Club
I think every post I read, my eyes fill with tear because for the life of me I can't imagine the amount of heart ache you must be dealing with on a daily basis. You have probably heard every single heart felt emotion from different arays of people but I want you to know how deeply sorry we are for your heart ache. If you need help with anything, the house (we are right next door) we are happy to mow the lawn, clean, or do whatever it takes to give you one less worry.
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.
Lara,
ReplyDeleteMy heart breaks for you and Brylee. I'm so sorry that this fight that no one asks for has been thrust into your lives. It's especially difficult to understand when person called upon to fight for her life is a child. You, Brylee, and your family will be in my most heartfelt prayers and positive energy will stream from me to you until Brylee becomes part of that 5%.
Sandy Ellis
Founder
Fight Like a Girl Foundation
Fight Like a Girl Club
I think every post I read, my eyes fill with tear because for the life of me I can't imagine the amount of heart ache you must be dealing with on a daily basis. You have probably heard every single heart felt emotion from different arays of people but I want you to know how deeply sorry we are for your heart ache. If you need help with anything, the house (we are right next door) we are happy to mow the lawn, clean, or do whatever it takes to give you one less worry.
ReplyDeleteSending lots of love and prayers your way!
Your neighbors "The Colosimos"