I've been really struggling lately. I want to put on a brave face for the entire world. It's so hard to live up to the expectation that everyone has of me. I always get the you're so strong, you're inspiring, you're so positive, and you're amazing. I have no idea why everyone sees that in me. Because reality I'm a freakin wreck! Every time I turn around there is something else wrong with my sweet Bree. What was the point of stupid radiation if all we do is live at the stupid hospital!? We were suppose to have upwards of 6 months symptom free. Well it's symptom free but it's defiantly not quality time! We are constantly at the hospital with complications. And I've been told a million times over that her chemo ,Temodar, is a very mild chemo. It's not suppose to cause hair loss or fevers or ect ect...well all her hair fell out this week!! I was so not prepared for that because at least 10 of her doctors told me it wouldn't fall out. Sunday morning when I pulled on her hair elastic to take it out to comb her hair the entire pony tail crumbled off into my hand. Literally I threw up in our hospital room because it was so unexpected. Then I cried for an hour as I combed her hair and watched those perfect ringlets fall to the floor...
I'm so full of anger and sadness. I have no patience with Bryker or Byrklee because I'm so uptight. I try so hard to be positive and see the good things that are happening. But it's do hard to always feel like that. I'm human...not superwoman. I'm dying inside.
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ReplyDeleteBeen thinking of you and your baby! Saying a prayer that God will give you what ever you may need to endure! :(
ReplyDeleteJust found your blog through a fellow DIPG parent. I haven't met Tiffany, but her husband, Zac, was on a business trip here in Iowa and drove up to meet us a few weeks after Oliver was diagnosed. Ollie passed away last year. He was 10 and was my oldest child. It is crazy reading your post because I have felt the same way many times. Anger... sadness... feeling like you are dying inside. I'm so sorry that you are going through this. I hate all of the trite phrases people tell me, but I know that I will get through it... struggling and falling on my face at times, screaming into my pillow until I'm hoarse, but I... WE... will get through this. I'll keep you and your family in my prayers. It is a lonely road at times and painful, but the memories truly keep me going and knowing that I'll see my little man again someday... as hard as the time spent away is... keeps me going. HUGS to you from a fellow DIPG momma.
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