everything and nothing

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.

he deserves a wonderful 3rd birthday.. I hope I can deliver
he deserves a wonderful 3rd birthday.. I hope I can deliver

 

Literally middle aged if I go by Jennifer’s life.

 

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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.

still…

I doubt .. everything and nothing.

13301413225_8210980d9e_oI learned last week that her DIPG cells kill mice in 5 months. She was so much faster.. What I wouldn’t give for those 2 months with my daughter.

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.

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..until there is a cure…

 

23 Responses to “everything and nothing”

  1. You are a strong and graceful writer. And mother. We have a 5 year old child with a mild but chronic genetic disease that potentially affects multiple organs and the vascular system. Today we had an urgent care visit and discovered possible mild kidney damage. Even though we bear the stress of not knowing what can be next, reading your post reminded me that we have nowhere the pain or stress you have been through and must continue through. So I find strength despite or because of the stress. I cry for you Libby. Unfair is just not the right word but the one I can come up with. Jennifer is beautiful.

  2. I pray for you Libby. I pray. I pray for Tony, Jonathan, Nicholas, Charlotte and Jennifer. I pray for you all everyday. I am so so very sorry you have to go through this. I am here. I will always be here. I will honor your beautiful and amazing Jennifer every chance I get. I will honor her tomorrow. To remember who she was, who she is And always will be. I love you all. All 6 of you. LOVE4JLK♡ FOREVER 6.

  3. Oh my heart aches for you. I pray for your family daily, and for the families whose stories I also follow. I pray for the doctors working for a cure. But today, after reading this, I pray for continued increases in awareness, which can lead to an increase in funding, which can lead to a cure. 8 more honeymoon weeks is a start. Next it will be 12, and eventually a cure. I pray for Jennifer’s spirit to help guide you through this dark time.

    I am heading up a jog a thon at our church next month where the proceeds will go to a local childhood cancer foundation called Lodi Cancer Kids. I was freaking out a little bit about having to give a presentation to the congregation next Sunday about why we’re doing it. Then I read this….and I realized the why is just as important as how much money comes from it. So many people are ignorant to these horrific statistics, much like I was prior to February of this year. I just hope that sharing this information with them makes more of them care, and that the next generation is more aware and cares more than the current.

    Keeping all 6 of you in my thoughts and prayers, raising money and awareness….because of you, because of Jennifer.

  4. Libby I am so sorry that your beautiful Jennifer got this terrible disease and I’m sorry that hers was so aggressive that you lost her so quickly. You have every right to feel the anger you feel. Please never feel that you or any one prayed wrong or that you didn’t have enough faith. Almighty God does not work like that and we don’t know or understand while some people receive healing and others don’t. God is bigger than our prayers and the things we pray for. He loves you and he loves your family and Jennifer too. I wish we could see into the future when we will have full understanding on why things play out the way you do. One moment at a time, one breath at a time that’s all you can do. And when you’re feeling angry, sad, frail or desperate let the rest of us hold you and your family in our prayers and lift you to God. Lots of love x

  5. You said, “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 thought I would share with you something…

    My husband had a client of his share with him a few weeks ago a near death experience he had…. except he did die and went to heaven and they were able to revive him. I won’t go into the whole story, but the main part that sticks out in my mind was that he said he remembers it being SO beautiful that he didn’t want to leave. He said the part that many of us have heard before that there are SO many colors, colors that we have never seen. He said there were angels with HUGE beautiful wings. He said he met God and “he is a good man”. Also, he saw his wife who has passed away and had a conversation with her. You hear of story’s like this sometimes, but very rarely do you meet someone and speak with the person who actually had this experience. Things like this solidify my faith even more and I hope the part about that he didn’t want to leave helps you even just a tiny tiny bit. Continued prayers for all of you and all of us to do our part to find a cure…. make a change!

  6. Oh Libby, my heart breaks for you. Your husband and children. I still, 10 years later, go “Oh i cant wait to tell him this”! My brother, then reality hits and I realize all over he’s not here. He doesnt even know my children. My heart breaks all over again with that reality and it is nothing compared to loosing a child. I remember people telling us “if you have enough faith” and how my father-a strong faith filled man- struggled with why his faith must not have been enough. Ive learned its more than that. Its thy will be done. Over and over. I dont know the whys, I dont think its always fair, I rage and struggle and plead and cry and rest and then come to say thy will be done. My husband was diagnosed with cancer in oct also. The guilt I have that he is here when so many others we know have died from this disease recently. A close friend who’s daughter will be in treatment for at least 2 more years. So thankful for a treatment but knowing how rough it is now. So many are praying over you. Because of you so many more know about this disease. That will never be enough and I know that gut kick of expecting someone to be there and realizing all over again they wont. So so sorry Libby. Love for JLK always.

  7. My son and I say a prayer every night for your beautiful JENNIFER, and your amazing family. Tonight we will add the doctors to find that cure, that no more babies have to hurt, that 7 shrinks to 0…….ZERO I want a CURE! Oh Libby I know Jennifer’s cell are going to find that cure, I believe!
    xoxooxoxooxoxoxooxox

  8. I am so sorry Libby. I will continue to spread the glitter and try my best to raise awareness, I will pray for you and your family, as I always do but will add praying for the doctors, to finding a cure. I am always here to help you in whatever way I can. Nothing is too big or too small. xoxoxo So much love for JLK

  9. Libby I am so very sorry. I still pray for you all. I’ve heard it said that God does answer all out prayers. There are three answers. Yes. No. Later. My prayer for those months was for a miracle. My hope today is that HIS answer to my prayer was not a no, but rather later. And that later there will be a cure and that all of this pain and loss results in the cure. That the pain creates energy and power to bring that change. So that some day soon HIS answer to the next parents’ prayers will be yes. If I can pray more specifically for you or even with you please let me know. Huge hugs to you all!

  10. I can feel your pain through your powerful writing. Sometimes I have to remind myself to take a deep breath, your words are so gripping. I am praying for you daily- especially for signs of your sweet angel by your side.

  11. It really sucks that this robbed you of your Jennifer, it is equally awful that it robbed 6 other parents that day. In Jennifer’s name I will help spread the glitter as much as possible.

  12. I am so proud of you, Libby. Given the chance, any of us would take this pain from you if we could and bring back that baby girl. You hurt so deeply, yet still see so clearly enough to recognize what needs to be done and be selfless in your passion to shield others from this fate. Your prayers ARE being answered. There are dozens – dare I say hundreds – of us here who have not been impacted by pediatric cancer, yet who you have fired up and inspired to honor you and Jennifer. We fight with you, my dear…until there is a cure.

  13. My brother posted this yesterday on FB…feelings that are so relevant to your post here…
    “Though we didn’t get the outcome that we had prayed so deeply for, we feel blessed with all that he did give us. I trust and love HIM more than I need to get my own way”

    As always… I am thinking of you and your family… and sweet Jennifer…hugs

  14. YOU have shared with us Jennifer, who has stolen our hearts and drives us to fight for change; I didn’t understand before. Until there were your words. They break the ice of understanding. You are Jennifer’s angel, Libby and an inspiration in strength. I think about you and your family every day. Every day. You’re words have become part of my consciousness and your plight has become a catalyst for change in me and people all over the world.

  15. I wish you could have her. I really do and I don’t understand why you can’t. But since I can’t give her to you I pray. I pray for comfort and peace and strength. I pray that you and your niece can hold on to your faith. And I pray that soon, very very soon there will be a cure for the monster that is DIPG. Much love to all of you xx

    Jennifer Lynn Kranz. (I realised I hadn’t used Jennifer’s name in this comment so I wanted to make sure I did)

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