I miss her today with all of me. I went for a run. It usually clears my head.. gives me space…
But not today. I am hurting. I remember so clearly 6 months ago. Calling my sister to tell her to come.. then not come.. then come. I wasn’t sure that we needed her… wasn’t really sure how close Jennifer was to her death. But I was afraid… so she came to us.
Today I am angry.
.. . at everything and at nothing.
I remember thinking I could never hurt worse then I did right then. I remember thinking the same thing those first days after she died. Thinking I couldn’t ever hurt as much as I did then.
I was wrong. So incredibly wrong.
I thought the same today. I thought I could never hurt worse than I am now. And as soon as I thought it, I tried to stuff it away. Like I was somehow tempting fate to show me how much more I can hurt. This new level of fear I live with everyday is nearly crippling. I am so scared for something else to go wrong.. so scared of what that could be.
I am already thinking about when Jonathan goes to kindergarten next year. How absolutely horrific that will be. How much I don’t want anything to change on us again. That I love having all minus one with me.. I just don’t want things to change on us again..
I am scared. Of everything. Of nothing.
We have Tony’s birthday on the 28th and Nicholas’ on the 30th. He will be 3.
Literally middle aged if I go by Jennifer’s life.
I just want to hold her again. I want to force this not to be true. I look at her picture and I beg with everything I am for her to come back.
please please please.
She is forever 6. She can’t come back and I hope that even if she could that where she is is so great she wouldn’t want to.
I doubt .. everything and nothing.
I am jealous of a mouse.
Some of the new up and coming treatments for DIPG might only buy kids 8 more “honeymoon” weeks.. Everybody in the room gave a audible gasp.. me included .. mine was, I think, the only happy one. 8 weeks of good time with my daughter. Oh the things we would have done.
I just wanted my little girl to live. I want to see who she would be now. I look at her picture and wonder what she might look like now ..nearly 6 months more grown from the last time I saw her.
Why didn’t she get to be a survivor? Why are we being forced to live in this hell?
There really is no answer to this question that will burn into me for the rest of my nights. Somedays I am able to put the question aside.. somedays I am better able to flip the script.. but today I am struggling with it. Today I am asking a lot of the why.. that i have tried to hard to avoid.
I read on other kids stable updates “the power of prayer!” I have read that a lot… that prayers are answered.. It bothers me.. like a kick while I am down. .. because what does that mean for me.. for her?? Lack of the power of our prayer? I know one niece in particular prayed so hard for her cousin.. my Jennifer. But our prayers weren’t answered.
No. I watched the life slowly be choked out of my 6 year old daughter.
I worry sometimes that she might struggle with her faith now. I worry she might carry some burden of guilt that she didn’t pray hard enough.. or the right way..
Actually maybe thats it.
Maybe we did pray “the wrong way”… or rather the with the wrong desires…maybe we still do. We prayed for Jennifer.. But it’s so much more.. so much bigger than her. More than a classroom of kids diagnosed a day with cancer.
We prayed for the right idea to get into the right doctors head. That always sounded so good to me.. but what if it already is? What if we should be praying for enough people to care… to stand up together to give that doctor the ability to bring that idea out of their head?
And now we pray for my strength.. and peace in my heart. But I am not alone.. 7 parents joined me today. Starting out on what they think is the hardest day of their lives.. not knowing it just gets harder as it gets more real.
So tonight I change my prayers.. I will try to force myself to see beyond just me. I admit it is so hard for me to do right now..I am so caught up in my own heartache.. my own everything and my own nothing.
I pray for the 7 gearing up to die tomorrow.. For the suffering they are experiencing right now. Though I remember her pain so well.. though I can taste it again in the salt of my tears…
She isn’t hurting anymore.
And I pray for all the people that haven’t been impacted by this disease. That something gets to their hearts and drives them to want to make a change happen.
I pray for all of our strength.. to keep at it.. even as it gets harder and harder to do.
I still pray for me. I beg for help to survive the unsurvivable. Because in this moment I am not so sure I can. I hurt so much. I feel so heavy.. so dark.
I want everything and nothing all at the same time. ..
… but mostly right now.. I just want her.
..until there is a cure…