jello

This grief.

Its so different than I thought it would be. Its so different than any other grief I have ever experienced. One where the color can break through. . . This time it doesn’t. .. I have my doubt that it ever truly will.

Tony and I talked about this on our trip. How is is not how we imagined it would be at all.. It is both easier and harder.

In the past, with the worst life had thrown at me.. I hurt.. horribly at times.. but then would slowly rebuild… never able to fully return to the deepest point of that hurt.

This time is so different. I am not just broken down ..

I am dissolved.

Wildly differently than I have ever experienced or could imagine… more like .. like jello I guess.

I can be a solid, albeit a jiggy solid, when needed to be.. for my kids or with other people or in public…a food with little nutritional value…that looks filling..until you look closely and realize you can see right through it.

Looking at the world through jello you see its distortion.

.. .left alone in the heat it melts down again.. like me back to my original state … liquify.

I hurt completely.. totally. Always.

But much duller than I imagined I would. When I read stories like mine I thought.. if it was me I wouldn’t be able to manage. I would be curled up in a ball.

..waiting for my death.

But I’m not.. well not outwardly at least. I think thats the core of me .. curled in on itself.. waiting for death.

Its startlingly how quickly it hits me..turns me back to the liquid state. For me its the moment she died in my arms. For Tony its a different moment that plaques him..

. .. our individual ground zero of anguish.

Its harder because it hasn’t gotten any easier… in so many ways it gets a little harder and more real every day. Its harder because its forever… and more truths of what that means are seemingly constantly revealed. Today it was interviewing babysitters and having to say 3 kids.. since thats how many they would be watching..After saying it once I knew I couldn’t say it again and I found a way around it..

K-2013-05-26-23

Its harder because life has lost its color. .. my heart is broken.

Its easier because I am functioning. I can smile and socialize and care for my living 3. I could even pass for normal..

. . i’m not. never will be again.

Its easier because . .I’m still so very numb. I never realized how the mind can protect itself so well.

I share this.. my innermost pains. The ones you could never see by looking at me so people know. . .. The truth of what its like to be .. I shouldn’t say a bereaved mom…so I will simply say this bereaved mom. Hopefully it can help others in not only their grief cycle but also those surrounding people in the midst of it. You can know that even though they look ok.. even though they seem to be “getting over it” and doing “surprisingly well”. They probably aren’t.

That’s the way it comes to me now..my jello analogy..exhausted from a late nights with severely interrupted sleep.

Nightmares are plaguing this house. Charlotte seems to wake up often now. Not in pain or hungry. But from disrupted sleep. Last night she was up every hour.. so I brought her into bed with me. She still woke up and I was able to watch her.. the way she lurched awake.. not something I have seen from any of my other kids before.. I have seen it in my husband when he is having a nightmare. Poor Nicholas too. Woke up crying and just needed to be held.

.. .and my nights..

why did I want to remember my dreams? I want to forget them again.

Little things pop up .. like emails from the girl scouts about camp. .. reminders that its time to re-order her favorite gluten free bars. I try to unsubscribe.. but it doesn’t always work.. or I didn’t think of a website. I hate it. That surprise smack.

. .i kinda like the sting though.

The reminder that she was here. That she lived. One day it will all be taken care of.. no more of those reminders.. That will be a whole different kind of smack won’t it?

On my computer I usually pull up the “last 12 months” album. It hit me last night that one day I will pull that up and there will be none of her. She will be erased from that seemingly mundane thing.. from our history. I hate that.. . that I am constantly losing her in little ways still

have been since before she died.. her personality changed.. our lifestyle changed… her body changed.

Its not just a one time thing.. not something I can get over.

Its a daily..hourly ..

.. .seconds sometimes..

type of thing that I am constantly grieving in different ways and different states of being.

Its a life long journey.. one I am only a few weeks into and already growing weary of it..

… easier and harder.. and somehow so much longer than I realized.

.. . this grief.

**glitter time** let it stick to you and pass it on

– When you read a survival statistic touted by our government and the American Cancer Society know survival for our children is considered 5 yrs.

– Two-thirds of children who do survive suffer from long term effects, such as loss of sight or hearing, heart disease, learning disabilities and infertility to name just a few.

-Also they are at an increased risk for secondary cancers. Girls treated with radiation to the chest are at a increased risk for breast cancer as women, comparable to those with BRCA mutations (thats the one Angelina Jolie has).

Gilroy Family Photographer | JLK Glitter Shoot-21

 

46 Responses to “jello”

  1. My heart breaks each night that I read your story. As a mother of two boys I can’t even begin to imagine what toy ate going through. I pray every night for you and your family. Btw, will you be sharing jlk’s service video? I Would have loved to attend, but was unable to do so. You, your family and Jennifer are always in my thoughts and prayers.

  2. Libby, the picture of the four of them is my favorite picture yet. Jennifer is right in the center of them all…as she should be… as she always will be. The center of your world. I think i read every line of tonights blog twice. I had to. I felt the need to soak it all in. Soak it All in. Even turned off my t.v. …. I just felt your words. With all that I am Libby, I am sorry. More than sorry. I am changed. I have said it on here, to you, several times. But I am. For the better. A better nurse, a better mommy, a better wife. I owe you. I owe JLK. Today, at the grocery store in was asked if I wanted to donate to St. Judges. I usually would push that little “no” button. Not today. Not ever again…..

  3. I remember my mom looking into my eyes, I could see her pain, I could feel her pain. She was so sorry for the words she was about to say. She pathetically said to me “I just want to die”…
    I remember feeling empty, so deeply saddened that she was in that much despair. That she could look into my eyes, one if her living children, and tell me she wanted to be with him more than me….
    How could she want that? How could she want to leave us?
    Only a mother who has lost a child knows why. That pain is forever. The loss is forever. But the disparity isn’t. I’ve witnessed it with my own eyes, you will not feel hopeless forever. The day will come when your children will show what life is about all over again. A beam of light will shine onto your dark world, and your new beginnings will start.
    Love and light, Sarah

  4. What a beautiful picture of all 4 kids.
    Jennifer is beaming with love and happiness.
    My prayers are with you and your family.
    Jennifer is loved and missed.

  5. I went through a traumatic event a year ago (although not on the level of losing a child) and I agree that many times I feel I am almost going backwards. It’s as if it hurts more as times goes by. I will think I’m getting beyond it and then bam! Im right back there and more upset than I was before. I totally related to your post “Slap”. I pray you begin to have more moments of feeling relief from the weight of the grief. Sending love to you and the entire family.

  6. While emails for her may stop showing up, she will never be gone from your family. Not if you all don’t let her. We talk about my brother all the time. At every single family gathering. We laugh about stories about him. Sometimes they are the same stories over and over, but that’s ok. We cry together about missing him, and not getting to ever see him get married or become a dad. I tell my kids about him, so my 4 year old tells people (all on her own) that she has 3 uncles on earth and one in Heaven. JLK will live on in your family, with your friends, and in your community. Glitter sticks. I was talking with my friend at church last night and she commented about how impressed she is that I have taken up this challenge of pediatric cancer without having it effecting my own family, and I referred her to your story. It is you, your precious baby, and these horrific statistics that make me fight.
    Life feels like jello now, but it won’t always. There will be good days again. There will be really hard days, too. You are already doing a great job of honoring her on those hard days. Give yourself some grace….you can’t just “get over” this kind of grief like others. You just learn to live with i tm

    So many prayers today.

  7. Jennifer Jennifer Jennifer Jennifer. Saying her name for you. It was so poignant to see the black and white photo: color has washed out of your life. Nothing will ever be quite as bright again for you and the people who read your blog and emote with you. But pink will always be glittery…. <3

  8. Your strength gives me strength. You may not see how strong you are, but daily you & JLK inspire me to be a better me, even if it is just 1 thing I do different. But please know that you don’t need to be strong now….that is what the universe is for niw, to hold you up when you need a break.

  9. How could any mother be whole again really? I think you will get to a point where you will enjoy life again- it’ll just be different. It makes me sad that the kids are so sad. I wish so much this wasn’t real.

  10. Send you love and hugs. You are so brave and I hope you know how much you have impacted all of us. We pray for you and your family every day and send you our strength, which I hope helps.
    Vansssa

  11. You said that perfectly Libs… It will never get easy, you never get over it… you just learn to now live with it. for some its easier to hide it, keep it to themselves… but you Libs, i am so freakin proud of you for this blog… you hear it all the time, but you are amazing my friend and Jennifer is so proud of you..

  12. I love the picture of the four of them! Jennifer…right in the center…with her dark hair and beautiful smile…surrounded by the three blondes…My heart breaks for you! Thinking of you all…everyday…

  13. Your e-mails may stop, but we will always remember JLK. The beautiful glitter girl that has changed all of our lives!
    Hugs, love and prayers!

  14. Libby,

    Just another unknown person reading your blog. I feel compelled. If you are brace enough to share it – I should be brave enough to read it. You and the rest of the family are daily in my prayers. May Gods love surround you as you grieve.

  15. 10 years ago today I lost my son Will….the sadness never goes away. I thought as I was in the shower this morning that 10 years ago today I felt for the first time what TRUE sadness is like and I was forever changed. It does feel a little less “jello” like as time passes. …I am so deeply feeling your sadness Libby. You and your family are in my thoughts and prayers everyday.

  16. I am sorry for your hurt. Jello is okay. Don’t be hard on yourself. I am so proud of your courage and strength. Sending love and hugs!

  17. Still here, reading and weeping, broken-hearted with you, wishing I had encouraging words. You remain covered in prayer, and I can’t wait to see how God uses all of this and how He remains faithful to his promise: Blessed are those who mourn, for they shall be comforted. Holy Spirit come and comfort this beautiful Mommy. Amen.

  18. First and foremost….that first picture is absolutely STUNNING, and I am so glad that you have it.

    If reading this blog helps in even the tiniest way to take just a little pain off your heart, I am happy to take it, and carry for you.

    In my opinion, every single thing you write about seems like it must be perfectly understandable. I cannot imagine any grief that is even comparable to the grief from the loss of your child; a piece of you; a piece of your heart.

    I am just so very sorry for you all.

    Love,
    Diana

  19. You are still in my heart everyday. I have been listening and loving. Greif is surprising and painful and important and yours. Your strength and bravery in the face of it is an inspiration. That may be little comfort but it is none the less true. Sending extra love to Jonathan, Nicholas and Charlotte.

  20. Your glitter, sticking with me in action. I received a donation request for cancer research at Stanford and instead of just sending in a check, I stopped and contacted them to see if their funds support children’s research specifically. I eventually got routed to Jenny Bailey, Director of Development Service at Lucile Packard. I was pleased to find that you can in fact earmark Stanford donations specifically for children’s leukemia, leukemia and lymphoma or cancer (general). However, without taking the additional step of contacting them to figure out how to route it, my donation would have just been sent to the adult fund. Anyway, I just want you to know Libby that slowly but surely, your story if making a difference for us all. I believe it will make an impact on children’s research in the near future. Thinking of you today.

  21. Dearest Libby . . . .

    I’m still reading every post. I try not to rush into it, as I used to do, because I know how your words make me feel and I need to prepare my heart and let God fill me with His strength, so that I can be there for you.

    Please understand, Libby, that this is not a complaint. It’s not even about me. I just want to try to explain how deeply we, your glitter gang, “feel” you and carry you on our shoulders all day, every day. That’s part of God’s plan for his kids . . . . He tells us that there will be hardship and pain in this world, and we won’t understand it. But He also promises that He will never leave us . . . . And He gives us one another to help bear the weight of grief when it threatens to drown us.

    What a privilege to feel your pain as deeply as I do, and to be able to lift you up in loving prayer.

    This is already too long, but I have one more thing to tell you.

    Yesterday I realized just HOW brave you are. It was like a revelation of the incredible risk you take each time you pour out your heart and soul to all of us, the majority of whom you may never meet.

    There is no way to know the ripple effects of what you are doing, but I just want to say you are my hero. I admire you, and I know Jennifer is so very proud of her mommy. God bless you and your family.

  22. I miss her so much. A little girl I never met but have grown to love through your blogs. I pray for your family through out the day. I’m so heart broken for you. I can’t wait to meet her in heaven some day.

  23. Perhaps another contact on the road to raising money for your foundation… saw Cindy Campbell on Katie Couric’s show today talking about raising funds for pediatric cancer research. She lost her beautiful young son Ty to a brain tumor not very long ago and started MuddyPuddlesProject.org and TLCFoundation. Raised over $500,000 in the first year. Maybe she would be willing to share some of her hard-earned wisdom with you.

  24. Jennifer is my Glitter Angel she will never be forgotten and already in my heart.. you can be sure of that, I think of you both on a daily bases and pray for you..Jennifer will always be with you Libby in your heart..

  25. That black and white photo is simply beautiful. I am sure that is how JLK looks as she is watching over all of you from Heaven.

    Although I don’t know you personally, I live in Gilroy and my heart smiles every time I see one of the Love 4 JLK ribbons on the back of a car.

    Are you still planning to post the video of her services? I wasn’t able to attend but would really love to see the celebration of her life if you are still wanting to share.

  26. While survival is the goal… I think many people don’t understand survival stats. Survival for many… perhaps bordering on most in the world I am most familiar (bone marrow transplant) is complicated with long term effects…

    My point– better therapies are needed… to bring children to a place of a beautiful survival.

  27. There is so much I wish I could say to help but I know there are not even words to do so. I have been praying for you and your family and will continue to be your supporter even though I am a complete stranger. You are amazing Libby and strong and you are doing the best you can. You are in my thoughts everyday. Xo

  28. Jello. great analogy. i appreciate you, your writing, and how that transparency has let us in to experience the depth of your pain and your love for your family. crying at the damned unfairness of this f***ing disease. hugs to you and your sweet loves.

  29. I wish I could be more eloquent but I can’t find the words that adequately tell you how much I hurt care and pray for you. I am forever covered in JLK’s glitter. Lifting you up to God

  30. I randomly saw your blog shared on a mom Facebook group two months ago and I felt compelled to read it. I haven’t stopped reading and I won’t until you stop posting. I initially felt connected to your story because my son had Retinoblastoma, a pediatric cancer of the retina. Those months of chemotherapy, blood and platelet transfusions, life with a port…that was the worst year of my life. I’d never even heard of Rb. I’d never heard of DIPG until Jennifer. I want you to know how deeply I understand that it’s not fair that my son gets to survive and live a happy life as a three year old while your daughter tragically passes away. Why did it work out for us? Why did my 10 month old get diagnosed with the “better cancer to have?” No parent should have to even be thinking about these questions. I am behind you 100% in regards to funding research for pediatric cancer. I will be following to see how I can help further. I think of your family daily and pray for peace for all of you. Especially for those precious little boys of yours. – Jennifer

  31. Today I had a tender moment or a JLK moment (as I choose to call it if you alow me) it’s
    Related with gift that a frind gave me tonigth, a Elmo’s cup, it’s simple and made me happy;) and somehow it bring her to my mind (and sparkle into my eyes)
    I can’t even imagine the magnitude of ur pain or your desperation
    But I know Your little J is with you, when you feel strong or like a jello mom
    She is the light she has glitter inside
    She has sparkle 😉

  32. Today I had a tender moment or a JLK moment (as I choose to call it if you alow me) it’s
    Related with gift that a frind gave me an Elmo’s cup, it’s simple and made me happy;) and somehow it bring her to my mind (and sparkle into my eyes)
    I can’t even imagine the magnitude of ur pain or your desperation
    But I know Your little J is with you, when you feel strong or like a jello mom
    She is the light she has glitter inside
    She has sparkle 😉

  33. My heart aches for you and the grief you are going through. Jello what a true analogy. Your words will help others and by sharing them I believe it will help you too

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