February 1

Hey Super Bowl. Fuck you. And while we are at it. February can go screw off too. .. Well maybe not. Maybe I love Februaury too. Because its the last month I held her. The last month I felt her heart beating..

Always strong until the moment it stopped. Just like Jennifer was.

Today sucks.

Because Tony wants to watch the game. Because he doesn’t have the same connection to this day that I do. So we both feel guilty for upsetting the other one.

Because Jonathan just can’t stop hurting right now. His pain is strong. Intense. Real and for him so confusing. He doesn’t understand why its suddenly so palpable again.

So he is constantly looking for reasons and explanations to explain why the feelings are bubbling. But the truth is.. its simply just almost been a year. And all parts of his body remember.

We had all the kids here for the Super Bowl last year. And my friend came to take pictures for us. Our hope was some last family pictures. That show our love.. and maybe snippets of joy.

it didn’t work out that way.

That Sunday, though not the first of the month, was horrific. A day we started to really doubt all the choices we had made.. that we started to doubt if we could really give her what we believed she wanted.. to die at home. She couldn’t pee. She was in so much pain from it. From the full bladder and constant urge to go. Can you even imagine that kind of torture? And then a lack of any true communication skills to tell us about it.

im so sorry jennifer lynn. so sorry you had to endure this day.

You know I am not scared of dying. Not even a little. I am however terrified of suffering. But part of me wants to. To know everything she had to endure.

Part of me really believes I deserve to. Because I didn’t stop her from suffering. And I am her Mommy. Not even just her Mom. I was still her Mama. Thats what she called me.. A title I yearned so much for.. a title I will forever question if I deserve.

We tried to cath her. We couldn’t. She didn’t speak anymore at this point. But oh did she yell. And cry… Physical and emotional misery for all of us.

Our friends there to help with the kids .. they tried to coax Jonathan away from her door. He wouldn't budge. He needed to be near. To really hear what was happening to his sister.
Our friends there to help with the kids .. they tried so hard to coax Jonathan away from her door. He wouldn’t budge. He needed to be near. To really hear what was happening to his sister.
Nicholas.. he just simply didn't understand. The chaos and the pain around him.
Nicholas.. he just simply didn’t understand. The chaos and the pain around him. But he too just needed to be near it.

Her cries filled our home. And so then did the cries of every adult in it. Our boys went to my parents again soon after this. Unfortunately..and as their mother.. a painful admission of guilt. This is part of the collateral damage of childhood cancer. You cannot care for one that is dying while giving those witnessing it everything they need. I had no idea they could hear. .. no idea they were standing guard right outside her door.

We were trying to take her out of pain. She trusted us. She wanted to feel better.. but everything I promised .. every new medication never stopped the vomiting.. headaches still overtook her and then this.. She simply had to go potty. But couldn’t. A simple procedure should have brought relief. It didn’t.

I took her into the bath with me. I thought she seemed so tiny then. I thought there was no way she could possibly get any skinnier or simply keep living any longer.

she did. 10 more days. 13301789294_de3727492d_o

I think she really liked being in the bath with me. I remember trying to figure out if I could make that be where she died.

She was exhausted after all of that. Her body was exhausted and so was her hope. In that moment she seemed resign to her suffering. A child should never have this look in their eyes.

A child should never have this look in their eyes.
I would love to kiss her and say sorry to her warm body again. To know she could feel it.

Jennifer did return to us again.. her trust and innocence were never beaten by her cancer.

I eventually made my way out to the kitchen and realized it was Super Bowl sunday. I hadn’t even remembered. I heard the game and the announcers and remember being so angry. How can this still be happening?  How is the world still operating?  When a innocent little girl… when MY 6 YEAR OLD is laying under her princess comforter dying??

suffering.

i don’t think i have stopped asking that question.

I felt so horrible that I couldn’t relieve her of anything she was going through. I remembered combing through her hair with my fingers and feeling depths of pain and guilt I can never ever accurately describe. It was like I had been completely turned inside out. Nothing was right. Nothing was where it belonged.

Jennifer trusted me to take care of her. But I couldn’t.

So now I sit in her room.. her lifeless room. I had to escape the pre-game .. because all I hear as they talk.. all that echoes in my  mind.. is her writhing and screaming in pain.

suffering. dying. ..

and

trusting.

 i am sorry jennifer.

love your Mama.

13301424245_7805e5c4d9_o…until there is a cure..

33 Responses to “February 1”

  1. So completely unfair…. just makes me so mad that Jennifer had to endure this… that you all are enduring this…. please God please…. let there be a cure… let there be enough funds soon to stop this complete unfairness!!!

  2. I am so sorry that this month has to come. I know it will be so hard for you all. I will be sure to be active and also to keep you all in my prayers daily.

  3. Oh man, the photo of Jonathan sitting out side Jennifer’s room destroyed me. Tears for all of you. I think of your family every day. Much love to you all.

  4. I so wish any of one us could take away your pain and guilt. Take away this countdown. Take away her death.
    Jennifer is your miracle, and she continues to make miracles happen. I believe it will not be for naught. She is moving mountains through your voice. You are opening minds, hearts, and eyes.
    You have all my prayers and love

  5. These pictures of your beautiful children just ripped a hole through my heart, its painful but at the same time makes me want to scream that childhood cancer needs to stop, I can’t even image your pain, it takes my breath away,but I’m hear until there is a cure love from me to you Libby

  6. I never want to experience your/her pain and suffering with my child, my grandchildren. Feeling so very selfish for still having mine and you have lost yours. No words…just sympathy for you and your family. I wish and pray for this never to happen to anyone. So unfair…why? No answers, nothing to say that would console you. So very sorry this happened to you and your beautiful family. Still thinking and praying for your healing to begin…until there is a cure…so at a loss for words…so sad for you and yours. Dear Jennifer…I hope you are at peace and feel the comfort of our Heavenly Father. I hope you can find the answer as to why you and give your parents and siblings some peace of mind. Lemons…and more lemons and I water to make lemonade…no sugar to sweeten the pain. Why?

  7. Im am so so very sorry Libby. It wasn’t your fault. You did everything you could. I wish with everything in me she was still here with you. Those pictures of Jonathan and Nicholas and of beautiful Jennifer tore me apart. I am sorry you have to endure this. I am sorry she is not here. I will continue to fight. To spread the glitter. To share the knowledge till I’m blue in the face. I will never give up. Because Jennifer didn’t. cancer did Not won. It wasn’t a fair fight. We love and miss her so much. I think about Jennifer everyday. I think about all of you everyday. Fuck cancer.

  8. Tears, my friend. Those photos of your boys – helpless outside of her room – and the pain in your expression – I am so, so sorry. And active, for your family. Hugging my babies who still call me Mamma. Promoting your cause. I can’t believe this happened to you, to her.

  9. Speechless also tortured by the cherished photos of little brothers trying to protect and be there for their big sister….missing her….loving her. You, Libby, did every thing you could. With each new try at a medicine you never gave up and Jennifer knows that.

    Sweet Jennifer, your story has helped me sooooo much….with my depression, as a mother and as a survivor. I never take that for granted…..wish I could take your place sweet girl!

    Many prayers and hugs!!

  10. This post is haunting…you illustrate so much with your words. Thank you for helping the rest of us get it more so we can be there for others more. All the same I’m so sorry this happened…nothing about it makes sense. I hope you all find some moments of peace this month.

  11. I think the description “haunting” is so accurate for me too. The words and pictures together bury themselves deep in my heart. I was thinking of all of you yesterday but especially Tony as there seemed to be a plethora of dad focused ads. I am so sorry for the guilt and doubt you are feeling. It seems so unfair to have that plague you on top of everything else. I wish I had something more to say than that. Something that felt helpful somehow. Until I have the chance to give you a hug in person I will keep sending virtual hugs and support. And a never ending well of my deepest sympathy.

  12. This is so heartbreaking to read, no mommy, daddy or family should have to suffer the way you are or the way Jennifer did. Life is cruel & unfair & I cry for you, with you & because of you. The images of the boys did me in, they loved her dearly & all they wanted was their sissy not to be in pain. They were protecting her or doing their best when they felt helpless. How has it already been almost a year? Doesn’t seem real. Your love for her always was & will always be endless, she knew that. She knew you did everything in your power to take care of her right up until the end. She wouldn’t have wanted you anywhere else but by her side. She wouldn’t want you to be guilty because she knew how amazing of a momma you were to her & she is proud of you for that. You are still fighting on her behalf. You are making this senseless, horrible tragedy have a face & a life beyond the physical. Jennifer is doing so much for pediatric cancer through you. You always say she was the person who took care of everyone else & she still is, but she is using you to do it. Love4JLK

  13. Libby, I have been reading your blogs since day one. I have cried reading your blogs and prayed for your family whole way. Have only commented one other time, when you questioned if heaven really existed??- I replied to your post and said heaven was real and beautiful and God was amazing and was by her side.
    Today, I just want to tell you that I dreamed about Jennifer last night: she was in a home full of children. I saw her through a window as I walked by and she was smiling. A BEAUTIFUL Smile… I walked around to the back of that house and saw her again through another window. She waived good bye, smiled again and told me her name was Jennifer when she saw me trying to ask if her name was Jennifer. That smile she had was priceless… She looked so very happy :-). It was a beautiful dream…

  14. So heartbreaking. Life works in ways I can’t understand. What if all the focus and money put into the Super Bowl went towards something more important like finding a cure for childhood cancer. We focus on the wrong and less important things. I trust in God but can’t understand why she had to endure what she did and why now you guys are left suffering. I will continue to pray for your family as Jennifer will always have a place in my heart.

  15. My heart is broken for you….there are no words I can say that will make it better…I remember reading the blog at this time last year and having such a heavy heart, I would think about Jennifer constantly. And I prayed for you both so much. Just wanted to let you know that.

  16. Tears streaming down my face and feeling so sad and guilty myself – and my own feeligns are not even a drop in the bucket compared to how you have been feeling. Send love and hope to you.

  17. Hi Libby, yes it is so unfair that Jennifer had to endure south pain, my heart goes out to you and your family. You are such an amazing person you will forever be on my prayers., until there is a cure. Love you forever Jennifer Lynn. Forever 6

  18. So much agony conveyed in this post…I feel it and I echo it… I am on your side and on the side of your sweet boys stationed outside her room, and on the side of Tony in bewilderment and we will CHANGE IT. Lead us and we’ll follow, anywhere, to raise funds and awareness in memory of Jennifer.

  19. I read this the other day and haven’t been able to get it out of my mind. My heart breaks when I think of what you all went through the day. And all the days following. But the Super Bowl. This year. She was there. When Katy Perry opened the half time show with roar, she was there. Not sitting quietly, but making her little self known. Just like you are now roaring for your girl, and all of the other girls (and boys) out there who may not have to go through this devastation. I know that I said her name when I heard that song. And I told a bit of her story to the people I was with. I know that a lot of other people did too. Keep roaring Jennifer and Libby. We’re listening. You’re making a difference. Xo

  20. It all still hits me like huge blows to the gut, and she wasn’t even my own. Of course we wish this wasn’t our reality, but it is.

    I’m totally with you on the Fuck February bandwagon. Today is three years since we lost my brother, and today can just fuck off. Sending you love. Know that your precious, beloved girl is never forgotten. #love4jlk

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