heavy and crushing

It is so hard to come home to a house without her. . Its hard to leave and feel like I am leaving her behind. .. It is hard to come home.. to hug my boys.. and have my arms ache so desperately for the one hug I will never have the luck of getting in this life again. IMG_1271 I know experts would tell me she is too little but I am so sure Charlotte feels the same way too.. The unabashed joy that washed over her seeing her brothers today was incredible. I couldn’t help but wonder if she thought they were also gone from her forever. It was a half giggle – half cry noise. Eerily the kind of noises I think I would make if I got my Jennifer back..

IMG_4754                                         a sound of joy and disbelief.

Then before I put her to bed tonight we sat in front of the pictures of Jennifer to say good night.. And she was so animated.. And it broke my heart. Because her big sister is not like her big brothers.. she is never coming back. DSC_0461 I’m sure some might think I am crazy.. think I am pushing my emotion onto her. Perhaps.. but not completely. This is just something I know .. that even my 13 month old has her own loss that her little mind is struggling to grasp and make sense of. DSC_0190Moments earlier a wet faced husband and 4 yr old were in the room with us. Both having shared some grief over the missing girl in their lives. .. . We all needed to be together again.. to be in our home. Feel the weight of her absence. …its so heavy. its so crushing. Jonathan wants a picture like one I have of their sister and Nicholas. I don’t have one. I have so many others that portray DSC_0013the undying love she had for him.. but not the way he wants to see it. ..

I hate how helpless I am feeling right now.

I thought DC would be freeing.. I thought it would give me a renewed sense of purpose in this fight. It didn’t. It did the opposite in a lot of ways. If her death somehow lead to a cure for pediatric cancer it would never be good enough for me. But somehow I thought maybe- just maybe- her death wouldn’t be completely in vain.. it gave me a half a second of relief.. This trip for the first time I am so scared it might truly be in vain. Her death. That nothing good will come from it. this thought is …its so heavy. its so crushing. There was boy in DC that was part of our larger group, I think he was around 16. When asked why he was there, he shared it was for his friend who died when he was 10. I couldn’t help but want that for my daughter. To have her be remembered 6 yrs later by her friends. I know its selfish to want these kids to be so impacted.. so broken by her death. Her friend recently had a birthday party.. this girls mom shared how mad she was leading up to it and she wasn’t sure why.. till it hit her. Jennifer was missing.. and so was I. And I liked it.. I like that she mattered.. that she was thought of. I liked that somebody else was mad and hurting because she is gone.. I know thats “bad” .. My beautiful niece is struggling.. in counseling because the loss of her little cousin. And all I can think is I hope its not too good.. I hope she doesn’t heal so much she forgets.. that she moves past my baby. Admitting that outloud makes my stomach hurt. Its humiliating. I miss her so much I shake inside.. I didn’t even know that was physically possible. I have to find a way to make this “right”.. to make her death “matter”.. I have to.  Because if I don’t.. DSC_0028its too heavy. its too crushing.

24 Responses to “heavy and crushing”

  1. I don’t think there is anything in this world that would ever make her death “right” because its just not. I just pray, with all my might, that donating her tumors will “matter”….in many ways it already had Libby.

  2. You are so honest and say what most of us would be too afraid to say – but am sure we would all (or most of us) feel that way.

    Continuing to support you from MA. Sending along love to all of you.

  3. I pray daily for there to be a “reason” for her death. I know it won’t ever be good enough, but something is better than nothing. A breakthrough in treatments, understanding more about why and how DIPG occurs…something. I know it felt like the people on Capital Hill weren’t really listening, but I believe if they hear it enough, become inundated with it, something will happen. Thank you for doing what you do.

  4. Libby, JLK’S death will never be “right” but you are making it matter. You are doing big things. I am still here reading, praying and thinking of you. All 6 of you. So much #LOVE4JLK

  5. I know that that entire universe isn’t worth Jennifer, but please don’t think that no good has come since her death….that it’s in vain. Everything I’ve learned from you, as a mom and about Jennifer, it has changed me. It has given me a new perspective and new strength. I’m a better mom. I still struggle, but I can’t tell you how much that means to me…to be headed in the right direction. And I’m healthier now. I take better care of myself and value myself more. I found my purpose. I’m sorry all of this was because of the greatest loss a parent could ever face, but I’m also grateful…for you and for Jennifer.

  6. You have reached SO many people and you are making such a difference in the world. Thank you for being so honest and open. Thank you for moving forward and making a difference for so many people now. Thank you for the future of many families and children with DIPG who you are making an huge impact for. It will NEVER fill the void in your heart, but your impact on the world will strengthen other parts of your heart. My love is still always with you and your family.

  7. Her death was not in vain and she won’t be forgotten, ever. I’ll never think it was right but it wasn’t in vain. Her friends, my daughters will never forget her and she’s often thought of in our home. My daughter is planning for her upcoming birthday and Jennifer was the first friend she wanted to put on the guest list -as usual, then she cried knowing she wouldn’t see her there because she’s in heaven. She cried remembering how Jennifer was at her last three birthday parties. She suggested we print pictures from those last parties that include Jennifer. My oldest daughter has been changed thru the death of one of her best friends. Jennifer’s young friends love her and won’t forget. I share this so you can know and never doubt that she made an impact, won’t be forgotten and is deeply loved…..forever.

  8. Libby your NOT selfish at all. All these emotions are normal. No one would want their child forgotten. I know NOTHING I say will bring her back. I so wish I could bring her back for all 5 of you. For everyone. Jennifer has touched so many. Her love for life, her love for her siblings, her love for her mommy and daddy, her brown eyes, her smile and her giggle. She has FOREVER touched so many. That will NEVER fade away. I know I speak for many when I say that. JLK will be FOREVER MISSED!!! I NEVER STOP READING YOUR BLOGS AND NEVER WILL. JLK will live on forever in so many hearts!!! Love4JLK

  9. It will never be okay that she died, no matter what. But I can promise you you she will never be forgotten. You make a difference every time you post. You keep yelling loudly and spreading her glitter and it will not be fruitless. Think of all the eyes you have opened, like mine. I had no idea about the lack of funds for pediatric cancer. I’ve never met you. I live a country away from you. But now I know, and I can yell too.

  10. I think you can say everything you feel, and it will never be “wrong” or “bad”. You had your baby taken from you. There are no rules now. Only what you need to say, need to feel, need to do for yourself, your living family, and your reluctant future. You are a warrior. We stand with you no matter what…

  11. Libby, her death will never be ‘right’. I wish with all my heart she was still here. Her death will not be in vain. I will never forget your beautiful Jennifer. She is to important to be forgotten. Even though I have never met you or Jennifer, I miss her. I miss her everyday. She will always be apart of my heart. I think about her every single day. With all the love I can give to you and your family. Forever 6. Always LOVE 4 JLK ♡

  12. Libby, I want let you know Jennifer has made a difference to me. Your recollections of her and fight for funding have changed me. You are not the first person I’ve met who has lost a child, but through your blog, I feel like I’ve known her. Her life has affected the way I see my children and taught me so much about the funding of pediatric cancer. You and your family are always in my thoughts.

  13. Hey Libby! You don’t know me and I don’t know any of you. BUT, I now know a LOT about DIPG. I know a LOT about the horrific lottery of childhood cancer. I know all sorts of things that I would NEVER know not having found you. Frankly, things I didn’t want to know. Now that you have opened my eyes, I want to help. I am still paying attention. I am still thinking of you. I am still thinking of Jennifer. I am with you & I am not going away. It’s a small consolation I am sure, but here I am.

  14. libby her death matters and impacts people way more than you can imagine, myself for example. her death,her loss will not be in vain i promise, there is a porpuse of why i hurt so much for her loss and i will never forget jennifer!!!

  15. I doubt that anyone could ever forget Jennifer. I found out about JLK a week ago, and I can’t stop thinking of her and how precious she was. I don’t know what she was like in person, but from the photos she just always seemed so happy, the love that she had for her family and her darling siblings radiated through the photos in such an inspiring way. what a brave little girl.. I feel so inspired by her.. and i think that is a big part of her legacy, one that touches and will touch the hearts of many people for a long time coming. TOday at the gym, I heard the song Roar by Katy perry, she was the first thing that I thought about. So don’t worry about sounding selfish, because you don’t. not at all. I have no idea what it feels like to loose a child, and I hope that I never will. My heart breaks for you and your family, but thank you very much for sharing!

    much love, from New Zealand

  16. Her life will never be forgotten. You have reached me all the way in Australia. Her death will always be wrong but I think her life has lasting meaning and I pray daily that her tumor will make the difference you hope for too. I can’t see anyone who loves your baby ever forgetting her

  17. The pictures of your sweet angel are beautiful. Thanks for sharing. I am proud to wear my love4JLK shirt:) Hopefully someday there will be a cure to beat this monster.

  18. Maybe the trip to Washington D.C. didn’t yield immediate results, but I have to believe the work you did there has planted a seed that will grow and have an impact. Things may be happening already. I just wish the trip hadn’t made you feel helpless and disconsolate. Jennifer’s death matters–oh, it matters. She matters. Your grief matters. This community will always stand beside you and your family.

  19. I will never, ever, EVER forget your special angel girl, Jennifer. This precious child, whom I only met so briefly one time, as she was still waking up from anesthesia in the cafeteria at LPCH, has made a HUGE impact on my life. I talk about her, and her loving family, all the time. And I always mention what I have learned about the terrible inequality of the funds raised for pediatric cancer research. JLK never quit, you will never quit, and WE will never quit…….or forget.

  20. It’s ok cuz you are helping us understand your hurt. Jennifer will always be remembered and missed. We all need to share your pain…you can’t do this alone…hugs and prayers daily sent your way.

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