God,
… continued from this post…
How is it possible? How is it real that she has been gone for almost 5 years.
Why? I know I know I know. We aren’t supposed to ask that. I am supposed to trust in your reasons. I’m not supposed to wish it to be anybody but mine.
I don’t know how.
She was just a baby. She suffered. So much.
They ask me. So many parents of kids like her ask me if she knew. I don’t even know. Why didn’t you equip me better to help her then? Why don’t you help me more now?
It’s still so hard. Sometimes. Not all the time anymore. But damnit. Its so hard. And I’m f-ing pissed off at you for it. I’m still so mad at you. I’m always going to be so mad at you.
Why?
Does she know how to read? Does she know how to ride a bike?
Why?
Why is she so distant. Why is so hard to feel her. I just want to know what its like. I want to know if she is still growing. I want to know what she looks like. I want to know who her friends are. I want to know.
I want to know.
Damn you. I want to know.
You let me down. More than I ever imagined you would. You let her hurt. you let her be scared.
Damn you.
You let me , let her hurt. You let me,let her be scared.
Why?
What the hell God. Why?
…
Hey. Please hold her for me.
Don’t fix her headband. She likes to wear it in the middle of her forehead like that. Play music for her.. let her dance. She loves to dance.
Tell her I love her. Please. Please. Tell her I’m sorry.
Take her swimming. She loves to swim. Let her help with the babies. She wanted to be a Mama so much.
I’m so mad at you God. I can feel my rage pulsate through me. But I need you. I don’t know how to do this on my own. I don’t know how. I know I can’t survive this on my own.
I’m scared of how powerful these feelings can still be.
I’m scared of the times they aren’t.
I’m scared of the rest of my life. To sort through all of this.
Please. Help me. Be stronger. And patient. Help me be brave.
…help us find a cure.
please God help us find a cure..
Now I am crying ugly tears. Libby we will never stop fighting. I think you are stronger than you think you are, & you amaze me every single day.
Everyone who reads your posts grieves for Jennifer. And for you and Tony and your family.
I wanted to write something meaningful in this comment, but all that came from me were tears of anger and sadness, because the feelings you describe shouldn’t have to be experienced by anyone. No amount of “I’m sorry” can make it better…but I do stand by the promise I made 5 years ago when I started reading your blog: I will never, ever give up the fight for the cure. Jennifer deserved it. She deserved to ride that bike and read that book damnit. “Unfair” doesn’t even begin to describe it. I can’t begin to understand the emotions you must feel…the first time in my entire life where I was truly angry at God was the day I first read your blog and discovered that DIPG exists, and what it does to beautiful children like your Jennifer. I’m angry and it isn’t even my child who has been stolen…the emotions you feel must literally be the most powerful anger a person can feel and still somehow physically breathe.
So I won’t say “I’m sorry”, because that is such an over-used understatement…but I will say “I stand with you in the fight”. Always. For JLK.
Heaven is so hard to imagine, yet only one breath away.
I don’t know that I “trust” what God did, but I can accept it on a realistic level (If I completely separate my heart and circumstances, and emotions 🙁 )…..that we’re all going to die…that we’re powerless to stop it….that children die all the time…we were not exempt, many people aren’t, although I look around and sometimes feel like so many people have NO clue, that it’s hard to believe it’s so common.
I couldn’t have said it better myself though:
“I’m so mad at you God. I can feel my rage pulsate through me. But I need you. I don’t know how to do this on my own. I don’t know how. I know I can’t survive this on my own”
Love, prayers and tears with you, we’re 7 years in, and I still keep thinking it’s a bad dream.
Thank you for sharing.. Honestly it means a lot to me.
Jennifer
Anger, frustration and doubt…those things are real and if allowed to consume us, we will have no energy left for the fight. As you know, Danica passed. I’m so sad for you and Kathy but I will keep the faith…until there is a cure…you and Jennifer and the rest of your family will always be in my thoughts. JLK…forever 6 and always remembered.
I have been following your beautiful family for 5 years. What your Jennifer went through was just wrong. Please God find a cure.