no word

I can’t stop crying. And thinking. SO much inside me desperate to pour out.

I try to go on facebook to numb my mind. And I see her everywhere and I am thankful. So eternally thankful.

. . . and gutted.

And scared for it to end. One day everybody will start to move on. You have to. It natural.

I can’t. Ever.

I felt something with her. A connection and a warmth together in the final moments. And its gone.

Its all fucking gone.

I am so lonely. Surrounded by nothing but love and prayers.

I am so lonely though.

It defies all logic.

But then again so does the death of a 6 yr old old. My 6yr old.

Muscles in my body ache from the voraciousness of my tears.

I had a nightmare last night. One I am too scared to share. And one that has made me too scared to sleep tonight.

I’m scared of the dark.

Tony snored last night and I freaked out. I cannot hear it again. That noise so much like the one she made. I can never forget that sound.

I watched the news program about our family and our donation of her tumor. I got a email from the dr in charge of DIPG research at Stanford.

We did good Jennifer. Really really good. There are only a handful of DIPG strains on the world. You my darling had a lot to give.

Instead of parenting and celiacs magazines on our coffee table its urn and coffin magazines.

. . .for my Jennifer.

Our Jennifer.

I thought I would dive right into planning services. Like I have for everything. Every miscarriage jumping right into what comes next. Never pausing. Or falling

. . .or beaten.

Til now.

I am battered. I am twisted.

I am . .  I am Libby. Wife of Tony. Daughter of Mary and Bill. Sister and Aunt to many.

Mother to 4.

and . .

. .  . .

. . .well we all know their is no word for a parent that’s lost a child.

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112 Responses to “no word”

  1. I have shed many tears because of your beautiful girl….What an amazing beautiful girl she will always be. I want you to know that while you feel as though you are not making a difference and you dont feel like you are an inspiration you truly are…..your perspective has given SO MANY of us the ability to love harder than we ever knew possible. Your beautiful testimony is so raw and so meaningful that if a person even read one post they would be forever changed. Know that while you feel the world is moving on…you have a band of ‘nestie moms’ that have vowed to support you in the days, weeks, months and years ahead. God bless you Libby. JLK WAS AN AMAZING GIRL…BECAUSE HER MOMMA WAS!!

    1. So very well Said! I couldn’t find the exact words to describe what Libby’s blog has given to every person who has read it! Libby, Tony, children family and friends, I pray for strength and healing in this part of your lives. Libby you are the strongest,wisest,most caring, remarkable person I have ever had the pleasure of getting to know through your blog. Jennifer was an amazing lil girl and that’s because of you! Your grace is definitely a gift from God! You in so many ways are a gift from God even if you don’t know it…we all do.
      I am a better person having read your thoughts. I want to try harder and love better and be courageous and strong and even though I have so many things going on that are hurting my life it’s nothing compared to your lives and truly I am grateful for my many blessings and it was your world that made me realize life is short and I need to give more of myself to others and to God and be more like you so very unselfish. Sending our love and prayers and thanks for letting us be part of your lives!

    2. I am so very sorry I teard so much listening and reading your story my heart is heavy and I can’t understand why your little angel had to leave you but I pray for you and your family no words can express the pain and hurt you feel and I know god is watching over you and he has gained another angel..♥

    3. Ok ok …. let me try this……..
      I do not know you. But your pain is real.let me tell you
      in a horrible. Horrific day on jun 3 My life endeed as I new it
      my beautiful best friend mentor, soul mate, perrfect person, my mom passed of a massive heart attack .yes in front of me scream my name Rebecca!!!!! Rebecca!…. like she was fighting her soul leaving her body. In a panic I tried to hold her up just then the sound.!!!!! The sound !!!! She was ask I had I had no siblings. She lived with me and get grandchildren. It Was a horrid nightmare. What im saying is the pain you are fesheeling is real. The pain is like a knife diggy deeper every time you breath. The kids of a very wanted child is profound. Imbrase her death. Remember every min. Your daughter was placed here for a reason. Her life was gave for a reason. Her death for a reason. But your sick of hearing that shit. Your more like that was my Daughter You assholes.!!!!!!. Your pain is your new best friend. You wanna stand in your house screaming fuck you! !!!!!. YOU START TO TWIST YOUR THINKING .death uou long for do you can see her one more time. Touch her one more time. Smell her. This my dear imbrases your every thought. But in time my LOVE the days keep going things become easier. Your little jen starts to come to you in your dreams. So now that you invest the time to sleep. The sun will shine so bright in your face you have pull your car over. Your heart will mend. Jen lives on in you just like she lived in your womb. She is so at peace. Your not. She is. Your peace will come trust me. Your smile will come again. In time you well be with your baby girl again.but now your job is here. She wants you to know that. ….. She was gave to you and took from you . Her life dose go on. Your life will go on Jen well be right there next to her mommy. You where there at frist breath and last. Now imbrase what your feeling. And again you will no how to breath………

  2. There are no words. Thank you for sharing your heart. I just wish to Hod this hadn’t happened to you. With ever fiber of my being, I wish it wasn’t true. I am so sorry.

  3. I so badly wish I could bring her back to you. I know that there isn’t anything that anyone can say to heal your brokenness right now. So for now, I just cry with you. Jennifer consumes my thoughts all day, every day, and I will never forget her. Never.

  4. It’s ok to cry and it’s ok to mourn. All the people, who read your blog – including me – without even knowing you and your family cried many-many times and mourn. And try to find the logic (can we even call it like that?) in what happened to your family.
    Remember when you wrote about seeing God’s will in this like a child-parent relationship….they don’t understand why we don’t allow them certain things and make them do things they don’t want to. I struggled now for a few days (since I’ve started to read your story on Sunday) to accept Jennifer’s fate…accept the unacceptable about children dying. It made me scared, I also have 2 children and worry all the time about them.
    What I think is making us so desperate to hold on to our loved ones is our own fear. Fear to be alone, fear to live without love, fear to not having that love again, fear of that this is it and anything beyond this life is non existing and bad and dark. And most importantly feeling helpless that I as a parent could not protect my child.
    I read somewhere in one of the posts about 2 books recommended to you and because my word was shattered by sorrow – yes the sorrow of you and your family – I chose to read the one called “Heaven is real”. By now I just got through a few pages but it already gave me a strong believe that heaven is real. Maybe it is too early to read for you Libby, maybe you need to cry a few more days or weeks before you will be able to stand up again. You don’t need to be strong now, let others be strong for you. But that day you stand up again try to look up this book written based on the words of a 4 years old. Children don’t make up such stories, I do believe all written in there is true. You need to believe that THIS IS NOT THE END. That is the only way to go through it and to live again. To live again the life down here which will take you closer to the life up there. I hope I don’t sound like a religious freak to you or to anybody, because I am not, I have my doubts all the time, but….Heaven is real and there is no pain in there. Jennifer is happy there and praying for you to stand up and smile one day again at your family, husband and children. They love you very much and we mothers who read your blog look all up to you! Please don’t forget that! xxx from Dubai

  5. Just wanted you to know that I hear your words and am thinking of you, here in this stupid quiet and dark in the middle of the night.

  6. The Grievers Prayer

    Dear God,
    Please hear my prayer
    My body is numb
    and my mind is racing
    My heart is shattered
    and my world is upside down
    I am hopeless and scared
    So many memories but not enough
    The world keeps moving and I am frozen
    I feel connected to nothing and no one
    There are many around me but the only one I desire is not
    I feel cold, lost and purposeless
    I am so tired but unable to sleep
    Please hold me, hold me tight. The color of my world is
    gone. I cry out to you in despair. Oh God! Why?
    Please God, I will try to rest, close my eyes, find courage
    to fight another day. Find purpose in my life.
    Find hope again. Please hear my prayer…

    Written by : Angie Cartwright

    Libby – praying for you and your loved ones.

    Lord hear our prayers…

  7. Libby

    You are the most courageous woman I know.
    You are the most courageous and loving mother Jennifer has.
    I use has because you will always be her mother a mother of four.
    I know there are no words to ease your pain just grab her blankets and stuffed animals tightly for ever if needed and hold them as if it were your baby girl. I am sorry Libby

  8. I will always where my bracelet for JLK , in remembrance and support. We love you! And we will always be here when u need someone to talk to.

  9. How can you move and jump into anything when you’ve never taken a step in this new world of loss your living in ? Be kind and forgiving to yourself. You will find your feet, and you will find steps in Jennifer’s honor. Just take your time, don’t pressure yourself to jump too fast .. I’m always praying for your strength.

  10. I am so incredibly sorry for your loss. I do not know you nor did I know your daughter but she has touched my heart in so many ways. As a parent I can’t imagine the pain you are going through. There are no words that feel adequate enough to write but I just wanted to know your daughter has left a lasting impact on so many lives. Thank you for sharing your journey, although it is a journey I am sure you have wished and prayed many times over that you never would have had to endure. You are in my thoughts and prayers not just today but for years to come.

  11. Libby, my heart breaks so much for you. What you have and are enduring is tragic, and beyond comprehension. I wish so much that there was something I could do or say to take all of this pain away from you.

    Please know, your grief right now is your “doing something”. It is so important that you allow yourself whatever space and time you need to grieve. There will be plenty of time for doing other things later. But right now, honoring your grief is most important. It will allow you to be stronger later, to have allowed yourself to be “weak” now. Let others do the other doing for you now. JLK will have wanted that.

    Huge, huge hugs.

  12. You and your family have been in our hearts and prayers since your sister in law shared Jennifer’s story with us. I have read your blog, attended fund raisers, written letters and above all, prayed daily for you. You – who is living through something none of us even want to allow ourselves to think about. You – who has allowed us to share these past months with you and made us aware of what needs to be done NOW to help. Every blog has left me in tears, but also amazed at your strength and fierce love for your girl.
    But now You need to do what You need to do. One moment at a time. Be gentle to yourself. Know you are surrounded by so much love and prayer.

  13. Oh, Libby. I wish I could somehow say something that would ease even a little of your pain. I cried watching the news segment. I’m praying so hard for all you, including Jennifer.

  14. precious, beautiful, strong, amazing, incredibly powerful mother of 4 we cry with you, we mourn with you, we feel you, the world from Dubai to India to Australia is mourning this untimely horrific loss. The world has learned so much from your writings…we are grateful to know you through this blog…You are God’s special blessing to this Earth.

    Big Hugs “Jennifer’s mom”
    Prabha

  15. I want to start off by saying thank you for sharing your journey, and continuing to share because I know the journey for you does not end with her passing.

    I am a firm believer in God’s plan and timing. We may not understand the whys or hows, and it is definitely fine for you to rail at him right now because it is so unfair. Jennifer was put on this earth for a purpose, as we all are. Some purposes are short. In her 6 years she made you and Tony parents and opened up that part of your lives. She also made you advocates for pediatric cancer. Through her, and you, more people are aware of the lack of funding for research. More people are raising money (including people like me who are strangers) and sending letters to Congress to change this inequality. And, hopefully, by studying her tumors, progress can be made in eradicating DIPG forever. She had a purpose. Your glitter girl continues to shine even after death.

    That being said, I know my words are no comfort to you right now. Don’t be afraid to be weak. Don’t be afraid to hold onto her clothes and blankets and toys just to smell her. Don’t be afraid to spend as much time as you need remembering her. Go through all of the stages of grief in your own time, and know that others are fighting for you right now. Love your babies, love your husband….that’s all you should do right now.

    I am so very sorry for your loss. A friend of mine, who lost a child and husband in one year, said this, “You never ‘move on.’ You just learn, very very slowly, to live your life with the hole in your heart and numbness in your soul.” I will continue praying for you and your family.

  16. Libby,
    Say what you want. Feel what you have too. Jennifer is living through your love for her, and the love we all feel for her; even those who’ve never met her. We will all continue this journey with you, beside you. We will see that Jennifer lives on forever…because that’s the kind of angel you’ve raised. Love and prayers to you and your family…I’m always here for you.

  17. Oh Libby, my heart aches. You were amazing and strong for Jennifer. No one expects you to be strong now. Grieve. We are here to listen and support you in any way we can. Love and hugs.

  18. Dear Libby, you have a world crying for you and sweet Jennifer. While the world may grow quieter one day so many of us are forever changed. I promise you that the impact of Jennifer’s short life will last in communities everywhere. I will forever be a better mama to my sweet little ones because I realize that how precious and fleeting their lives can be. I am also committed to supporting brain cancer and pediatric research in ways I has not anticipated. I am a pediatric cancer survivor against tough odds but until I saw Jennifer’s plight did I realize I have a duty to do more.

    So while one day Jennifer’s picture may not be all over Facebook, her spirit is etched on many mamas hearts and we vow to do more in her name.

    Holy Spirit, I call you to blanket Libby in your warmth and peace and be a comfort in her dreams.

  19. I’ve been at such a loss for words these last couple of days. Even now I wish I had something I could say that would comfort you, but I can only imagine that this pain you’re feeling right now is completely untouchable, so instead I’ll offer you my love, (all of our love, since I know there are so many of us), and pray that it wraps itself around you and holds you up when you don’t think its possible to even take one more step. We are here, we are not leaving. I am so grateful for you and your beautiful family, and for sharing your precious, precious girl with us. Grieve the way that you need to, don’t hold back, and for all of those moments in between, when you can’t figure out what you’re supposed to do next, please, please, please keep writing. And lean on us. <3 Always <3

  20. Dear Libby, thank you for sharing with us. Tears, tears, and more tears. You are right, there are no words, and when then are no words, just say Jesus. We will continue to lift you up in prayer. Holy Spirit, come.

  21. Libby~ I am so sorry for your loss! I cannot even fathom the grief and pain that you are going through. I miss Jennifer also and I dont even know her. I have been praying nonstop for you guys. Someday I may meet you, I live in San Martin, until then I pray…
    Just know that we are ALL here for you. God is wrapping his mighty arms around us through this tragic time. God has a plan even though you may not know or understand what that plan might be. He gave you Jennifer, even though it was a short period of time, he knew you were the one to raise her up and be there with her through her short 6 years.
    Your experience has taught me to be a better mom. You have taught me to savor every moment of every day not knowing which will be the last with my babies and I’m thankful for that. It’s so hard to know why this ihas happened to you but I pray that you get peace and understanding.
    This is God ’s Word… “I know what I’m doing. I have it all planned out—plans to take care of you, not abandon you, plans to give you the future you hope for. “When you call on me, when you come and pray to me, I’ll listen. (Jeremiah 29:10-12 MSG)

    With all my love!

  22. My heart hurts for you so much, i just cant imagine. May god be with you during this difficult time, i send all my love and prayer.

  23. Libby, my dearest,
    I wish I took take all that pain away from you. I get it. I feel you. I’m not moving on from you. I’m here for you now and later. No you never leave your lost child behind. You just pray for strength and peace and we all pray it for you too.
    Love,
    Corrie

  24. I keep trying to type but I don’t know what to say.Life is just not fair.I feel or have felt all the feelings your feeling.Nothing anyone said to me at the time of my daughter’s passing helped.It’s been almost a year for me and I still have bad days.I think that our little girls are free from pain and happily playing in heaven.Your baby will not be forgotten you have done a beautiful job of making sure of that.Prayers for you and your family in all the hard day’s ahead.

  25. Libby,

    Jennifer’s memory will be alive in all of us who were touched and changed by her courageous and short existence, even if we never had the honor to meet her. All the love and care you gave her made her the special being she was. You fought with her, hurt with her, suffered with her. She made you strong and you were her rock. I hope that gives you some comfort during this difficult time.

    My heart breaks every time for you and your family.

    Jennifer is an angel, and her glitter wings are now shining bright in God’s glory.

  26. I have read your entire blog in 24 hours and cried and cried and cried. Please know that the world is crying with you. We love you.

  27. I am at a loss of words, but I want you to know I am thinking of you. My heart is with you. You are so right- Jennifer did give and is giving SO much to this world… as have you. I realize that doesn’t take away the pain. Feel as you feel, grieve as you grieve…. there is no “right” way to be. <3

  28. Libby –
    I cannot truly fathom your loss. I have cried for you, for Tony, for Jennifer and her siblings! I can tell you, although not at all the same, I too have lost – my son-in-law – to suicide – 8 months after marrying my beautiful daughter. He was my ‘SON’ for 9 years. I remember vividly those feelings of anger, sadness, emptiness – so many questions! Again, not at all like what you are enduring, but it HURT – the desperate phone call from my daughter in Florida – I was in Illinois – helpless to be there at that moment for my daughter, who so desperately needed her mother. She was a widow at 24. Everything you are feeling is normal….you WILL go on…. you WILL move forward…. When? How?… in YOUR own time. Jennifer would want YOU to give her brothers and sister all the love THEY deserve, YOUR heart will always be filled with Jennifer’s love…therefore YOU will give your other children Jennifers love as well – EVERYDAY – ALWAYS! That is what Jennifer would want…..I truly believe that! Praying for you, Tony, and all of those who loved Jennifer with all of their hearts! God Bless!

  29. We will all move on, but none of us will ever, ever forget. Those of us (the MANY!) who have been so incredibly touched and profoundly changed by your experiences and Jennifer’s life will never, ever forget her. Some souls and stories last a lifetime. Hers will. Yours will.

  30. Libby,
    I lost my dad to cancer almost 5 years ago. I have two boys, ages 5 and 6, so I know that losing a parent can in no way EVER compare to losing a child but I wanted to share some things with you that I wish someone would have said to me when my daddy died.

    YOU DON’T HAVE TO BE STRONG RIGHT NOW. People mean well when saying “we’re so sorry, you’ll get through this, just stay strong.” Well I did stay strong. Took care of all the paperwork and arrangements, and blah, blah, blah. And guess what… To this day I still haven’t grieved for my dad the way I needed to. So Libby, DON’T be strong! Not yet. Cry as hard as you can. Scream until you can’t scream anymore. Break shit. Curse. Stay in bed if you feel like it. And hang tight to your sweet Jennifer until YOU are ready to BEGIN to let go. Your family and friends will hold it together for you and your kids will get their mommy back eventually but until then they will be ok. Kids are incredibly resilient and you know they’re in good hands. BE SELFISH!!!! Please. I wish I would’ve. And hey, if you ever feel like yelling and swearing at a complete stranger just to get it out of your system, feel free to email me and I’ll give you my number. You don’t know me but I’m here for you if you need me. We all are. And we’re not going anywhere.

  31. RAGE….
    Rage Libby, kick, scream, punch, sob, weep, and in between smile at the beautiful thoughts of JLK. I am so angry. You were robbed. Tony was robbed. JLK’s siblings were robbed. Damn it all.
    We become mothers way before our children take their first breath. We imagine all that life is going to bring them, all your hopes and dreams are stored up in them like Tupperware just waiting to be let out, right? We mothers prepare for everything. Keeping ipecac in the house (never used it, but had it!), colds, choking, runny noses, hurt feelings, BandAids but damn it not cancer.

    As a mom you protect, shelter, comfort, hug, cuddle, feed, cheer, cry, chase away the bad dreams, create magic in Santa Claus and the Easter Bunny and most importantly you are always there so that your child should never be alone.
    You continue to do that Libby, for JLK, for your family.

    Jennifer had the BEST of her mom, she got the parts you didn’t even know you had.

    We moms want to hold our on to our children and surround them with security and love far longer than we are allowed. You did all of that Libby. Jennifer knows it, she felt it, she sought comfort in it.

    Rage on….and when you are ready, I believe, you – via sharing your raw inner self with us all and most importantly sharing JLK with us all (thank you)-just may unknowingly built an army to fight this complete and total injustice. Let us know what you need and when you are ready – if you ever are – and I assure you there are people, like me who you don’t even know, who will fight right along side you – even if it is just to get through the day.

  32. I guess there are no words big enough for a parent who has lost a child.

    take the time, there’s no hurry. How could you not be broken?

    you will start stitching this new quilt back together that is your family when you are ready.

  33. The world may never notice
    If a rosebud doesn’t bloom
    Or even pause to wonder
    if the petals fall too soon.
    But every life that ever forms
    Or ever comes to be
    Touches the world in
    some small way for all eternity.
    The little one we longed for
    Was swiftly here and gone
    But the love that was then planted
    Is a light that still shines on.
    And though our arms are empty
    Our hearts know what to do
    Every beating of our hearts says
    We will remember you.

    – there is no word for a parent who has lost a child. It is a pain like no other. But our hearts are their home and they live there forever.

    My heart breaks for you all.

  34. Dear Libby,
    Take one breath at a time. For now, that is enough.
    I’ve been reading your story the last few weeks. You are in my prayers, you & your family. God is with you, Jennifer is in Jesus’s arms!
    Keep blogging!
    Love & Hugs sent your way!

  35. sorry if this is a duplicate – tried to post on another post but it didn’t seem to work.
    Libby & Tony,
    No earthly words can console..only Him. In the depths of grief I know it is hard to pray, so as the Body, Karl and I (along with countless others) stand in the gap. We stand (an active posture) in (suggesting the hole that is in your heart and lives) the gap (the space between you and the Lord – if it is tiny or miles long). We pray “Dear Heavenly Father, your word instructs to first in all things, give thanks…so we thank you, authentically and specifically for the gift that is Jennifer. We thank you that you knew exactly who to send – to call out of eternity to make Elizabeth and Tony parents, to teach them to love..to truly love. Love which suffers and is sacrificial. You know the sacrifice of a lost child. The experience may not be what the world or our human expectation would want or even be equipped to bear, but we are not made for here. Bear it with them, for them. This is not our home, Jennifer is home! We are thankful that she is with you. Yesterday, the sky and clouds were iridescent and pink, I gave thanks for the reminder that Elizabeth and Tony’s glitter girl is with you. Also,for the reminder to look up and to Lift up. Lord, forgive us if we try to fix this in anyway, anything we say or do in earnest may be wrong. So I pray we remember to lift up our precious friends to you, ask for your comforting arms and spirit to hold and console. For your words to speak and your LOVE to always be demonstrated. Thank you that you have perfectly orchestrated the people that will surround the Kranz, Scharrenberg and Calcagno families in your LOVE. So on the humanely created day of LOVE, we remember. We give thanks, and we remember that your body and blood was for such a time as this…that when nothing else can penetrate or repair… only you Jesus, Amen”

  36. I want to start my saying the impact you and Jennifer have made in my life is incredible and I promise Jennifer will never be forgotten..there’s no time frame on how long it takes to mourn the loss of your child, so you take as much time as you need to and remember we’re all here to listen and try best to comport and pray for you. I can honestly say I’ve never cried as much for a child and family I’ve never met, but for some reason I feel like I know all of you..I will continue to pray and make sure Jennifers memory lives on..I’m here’s to help in any way I can, please count me in..prayers and big hugs.

  37. Libby, there are no words….I have to say I’ve selfishly been needing you to post something. It’s like we’ve heard your voice every day & then all went silent, as of course it would. You don’t know me, but I feel like I know you and I want to take all of your pain away. How is this even fathomable? Your story of motherhood & love has inspired me in so many ways. When I’m doing menial stuff & want to complain, I think of you & Jennifer and keep pushing….the mere fact that you are ‘surviving’ is proof of the love around you. You may not be able to take in all of our replies, but know you have people in many areas with open arms & hearts for you & your lovely family. Xoxo

  38. Happy Valentines Day to you Libby and sweet angel Jennifer… I know your up there dancing and sprinkling all your beautiful GLITTER upon us..I promise you will never be forgotten..

  39. Libby,
    Jennifer’s memory will be alive in all of us who were touched and changed by her courageous and short existence, even if we never had the honor to meet her. All the love and care you gave her made her the special being she was. You fought with her, hurt with her, suffered with her. She made you strong and you were her rock. I hope that gives you some comfort during this difficult time.
    My heart breaks every time for you and your family.
    Jennifer is an angel, and her glitter wings are now shining bright in God’s glory.

  40. Libby,

    I fell in love with your daughter the first few seconds I started to read about her. She is beautiful. Reminds so much of my daughter. I also have a 7 month old. I vision myself in your situation on every new blog I read. I put myself there in your shoes and it hurts so bad.I feel a connection. Here I am weak as can be sobbing over YOUR baby. And here you are continuing to talk about her. I am not that strong. You ARE strong weather you believe or feel it now. No one said this was gonna be easy. CRY! Let it out, heck we all are. But I NEEDED you to know that since I’ve read your blog only a short 4 days ago I have become a different person. More patient with my daughter. I want her to be around me all the time, I want her close. You and Jennifer did that for us. Thank you JLK We have so much love for you!!
    MAD love for JLK <3 <3

    It makes it easier for me to think of her running around like a spazzy 6 year old-like most are ;), in the sunshine, glowing. In glitter.

    <3 Nikki

  41. Thinking of your family everyday since I read your blog. Please stay strong and I ammonia sure that Jennifer is an angel that watches over you,

  42. Say what you need to say. Share what you want to share. Every single photo of Jennifer is leaving a memory on hearts everywhere.

  43. I’m so, so sorry, Libby – for the loss of your girl, and for the reality that is dipg. I wish I could help you in some way. I’m praying for you.

  44. None of us will move on and forget, Jennifer is a precious symbol, she is EVERYBODYS daughter! In her short life, and as you can see from comments that are sent your way from around the world…JLK is not an anonymous little girl with an unfortunate fate, she is MY daughter, my neighbors daughter, the daughter of every mother…because any one of us could one day be in your shoes and that is why you are truly Gods blessing to us. You have no idea how sorry I felt for myself that my husband and I have struggled these past few years financially, we are those boomerang families you read about where a college education has not helped us provide for our three children all we hoped we could afford them. I went to Gofundme desperate to find some way to get us out of this hole, that is when I found your story and after reading through your blog, I felt ridiculous and ashamed, and that I owed God an apology for my ingratitude! I have a 6 year old daughter and after reading JLKs story I realized that I think I wasted so much time worrying about things that are temporary and eventually work themselves out…that I never stopped to really pay attention to the details, to the life inside of my children. Now I really pay attention, to every strand of hair, the way they interact with each other, faces they make, their silly moments, the sound of their laughter, how they look when they sit to color or play with a puzzle…little things, precious nuances that I once took for granted.

    Thank you for Jennifer, she has opened up my eyes to the true meaning of life, of motherhood, of Almighty God, of gratitude and joy! I know you prefer her here, with you, in your arms…I would too, a million times over. Yet I hope one day, when the tears turn into sweet reflections of her sacred memory, that you realize how your little girl awoke my spirit and that of so many countless people…to appreciate the glitter that surrounds us everyday, to toss it up in the air and dance…dance…dance…because someday, sooner than we think, we will pass on to return home to Jesus, and I want to be able to say that I didn’t waste my time wishing my life away. A little angel named Jennifer taught me a big lesson and the moment this happened, she became more than just a little girl who died of cancer, she became a vessel of our Lord Jesus Christ, how blessed are you to have been the lifebearer of such a special, amazing child. <3

  45. She is not gone, JLK will live on in every child cured of DIPG. You have reached so many people, and I truly feel that for the rest of time, someone will be thinking of her. People you will never even know.

  46. I have no words, just tears, love and prayers. Many many prayers for sweet Jennifer and your family. Thank you for sharing your story with us. I am forever changed, a better person and mother, because of you and Jennifer. I am so sorry <3

  47. Jennifer is a hero to so many who could benefit from her giving of her tumor. What a precious gift that is. Libby, we’re here for you. To always listen, and never forget.

  48. Libby – Unforunately there are no words I can say to make you feel better. I have a little girl almost the exact same age as Jennifer (my daughter Katelyn was born on 9/25/07). I can’t imagine the loss and emotions you’re going through.

    All I know is something deep inside me wishes I could knock on your door and just give you the worlds greatest hug.

    So from me to you here is a giant HUG! Thinking about you and sending you an embrace to hopefully ease you for even just a second.

  49. Libby . . . I hope you read this. I hope you play the song. It is what you are saying, writing.

    For the last few months, I have been singing it, shouting it, crying and aching for you, dreading this moment, but knowing it is for you.

    The song is “I Want You Here.” The artist is Plumb, and she has a God-given gift for identifying with those in pain, and helping them to express their deepest agony. Scream it with her. For as long as you need.

    http://www.youtube.com/watch?v=SyAN-c9k9HA&sns=em

    An ache
    So deep
    That I
    Can hardly breathe
    This pain
    Can’t be imagined
    Will it ever heal?
    Ohhh. ohhhhh.

    Your hand
    So small
    Held a strand of my hair
    So strong
    All I could do
    Was keep believing
    Was that enough?

    Is anyone there?

    I wanna scream
    Is this a dream?
    How could this happen,
    Happen to me?
    This isn’t fair
    This nightmare
    This kind of torture
    I just can’t bear
    I want you here
    I want you here

    I waited so long
    For you to come
    Then you were here
    And now you’re gone
    I was not prepared
    For you to leave me
    Oh this is misery

    Are you still there?

    I wanna scream
    Is this a dream?
    How could this happen,
    Happen to me?
    This isn’t fair
    This nightmare
    This kind of torture
    I just can’t bear
    I want you here
    I want you here

    God help me,
    God help me,
    God help me
    Breathe

    I wanna scream
    Is this a dream?
    How could this happen,
    Happen to me?
    This isn’t fair
    This nightmare
    This kind of torture
    I just can’t bear
    I want you here
    I want you here

    An ache
    So deep
    That I
    Can hardly breathe

  50. I read somewhere that the Japanese have a word (phrase?) for it and it roughly translates to “hollow” or “empty” with an indicator for “great sadness” but those words are all inadequate, aren’t they? But I am convinced that the words for JLK now are “guardian angel.” We’ll continue to keep you in our hearts. And we light candles for her.

  51. Like so many others who have read your blog, you don’t know me. I have kids at St. Chris and a daughter who is Trent’s age so I feel like I know you. And like so many others who have commented, I feel I have no words to comfort you and your family. I just wanted you to know that you are making a difference. I talk about you and your family with my children daily and you have created awareness for this horrible brain tumor. I pray for you and I feel sad along with you. Thank you for sharing your pain and hopefully the small army you are gathering can make a big difference! Virtual hugs, tears, and prayers are being sent your way.

  52. Holding space for you, Libby. To grieve, to mourn, to feel, to be numb, to scream, to do whatever you need to do to survive. One moment at a time.

  53. Libby- I have been silent because this brings back so many vivid and heartbreaking memories. I grieve with you! If you ever want to talk to someone that has been THERE, please contact me anytime. I know there are no words to comfort you but please know your not alone.

    From one gutted mom to another.

    Connor’s mom.

  54. You are a beautiful , stong, but yes, beaten down woman. You will regain your strength as time passes. Truly you will. Love, light and strength coming your way.

  55. We’re right here with you, Libby. Yes, the world will move on, but many will stay behind to comfort you. You will find steadfast friends who continue to support you. I did.

  56. I still Remember:

    Daniel

    Steven

    Ericka

    Jeremy

    Tatiana

    Jennifer Foster

    And now JLK

    I have been forever changed by these babies. Their parents heartache. Your heartache. I don’t ever want to forget. I can’t explain it other than that’s how I help their parents. They deserve to be remembered.

  57. Libby,

    My heart is heavy. It hurts for you as a mama. My daughter is a patient at the Bass Center as well. Those walls you describe, I know those walls and their uncanny comfort they share. I cannot stop thinking of you. Praying for you. Shedding tears for you and your sweet Jennifer. She will not be forgotten. You and your family are such an inspiration. Truly. In your raw, messy, think you are being selfish, but you aren’t, real way you are a reminder to me. To climb into the bathtub with my clothes on. To be present with my girls. To show them extra grace and love even when I am tired and have nothing left to give. I know I am not the only one inspired and reminded by you. So thank you, thank you for sharing what an amazing mama you are. Thank you for that reminder that in our imperfections, we are great and mean the world to someone else. In your despair it is ok to take some time for you. You will never be the same, just as so many will never be the same simply by reading your story. I know I am a stranger, but if there is anything I can do to show you and your family love, let me know. Know that you are loved, prayed for and thought of constantly. <3

  58. Tears. Praying for you. The only thing I can think to say is, if you have no words just offer up this prayer, “I give it to you God.” He will take care of you.

    1. Libby, I am Karen’s cousin, and I do not know your relationship with Christ, but please know he suffered more than any one of us might just so we might be saved throu his grace. He loves you more than you could ever know. He gave you Jennifer to begin with. If he has taken her away just like he was taken away, it is for a reason just as his death was for a reason. Please know will not force himself on you, but maybe through Jennifer, you will come to know him. Cry out to him now to come to you and be with you and fill your void to help you have understanding that Jennifer is with him. Scream at him if you want, but he will come to you ONLY if you ASK. I know first hand through experience of profound loss, that he exists. He is thee only one that can fill your loneliness and give you peace. My prayer is for you to be able to have strength though these following months to do what Jennifer would want and be the same incredible mom to your 3 healthy babies as you have been to Jennifer. They need you desperately to be there for them every day, because they not only lost Jennifer, but they lost a part of you that died with her. Love surrounds you in these posts and will help carry you through these days and through this valley. You will find a new normal and you will be okay again. You have an amazing life ahead of you, but now is your time to grieve and recover from the survival mode you have been in for months. God bless you Libby. I know you do not know me, but I live in Gilroy and I have been to your fundraisers and read your blogs. My family knows your family and I have never posted until now, but I felt moved by the spirit tonight to do so. Take care of yourself sweet mama. You have done an amazing job and it is time for you to take a rest. With loving prayers for you and your family-Donna Banister

  59. Start small. It’s a new world that you fortunately and unfortunately will learn to navigate. I think there will be many sad firsts and many firsts that hurt. You have experienced some of them already. Some day there will come a good first – the first funny memory that comes back to you and you laugh without feeling guilty, the first happy memory that comes without feeling pain. It may take months or even years to get here but there will be good firsts again.

    I also want to say thank you. Thank you for being brave and donating to science. Thank you for being brave and showing others it’s okay to hurt. Thank you for being brave and getting up today even though you knew it was going to be painful. I send you my prayers and love as do we all.

  60. There is Nothing that I can say that will bring your daughter back. I so wish that I could bring her back for you.
    You and your family are in my thoughts and prayers.

  61. Libby..You really are truly amazing and in time your light will shine very bright ..for now cry..scream …rage…write..seek help from friends and strangers who now are lucky to call you a “friend ” thou we have never meet face to face !!! They say time heals all wounds don’t know if I believe that when it comes to the death of ones child, but I’m sure time will help you find a new “normal ” for now do what makes you able to cope !!!!much love

  62. Dearest Libby, I know words don’t provide comfort but you should know that there are thousands of us out here who have never met you but are so heartbroken for you and wish there was something that would ease your unbearable pain. I will move forward, forever changed, and will always carry Jennifer in my heart. I will never forget her. I vow that I will continue to write to Congress, spread the word for the need for equal share of funding and will keep the story of your amazing glitter girl alive.

  63. There is no word for it. My mom says it’s like joining a club no one wants to be in. You feel a kind of kinship with others who have lost a child but at the same time, don’t want to because why do you want to hear their sad story when you are busy living your own.
    As a child of parents who lost a child (the favorite child), I can say that their love for the rest of us is appreciated. Losing a child can break some people, I pray that you are not among them. I can see their struggle to continue living their lives and loving their remaining children in the same way they did before and I am grateful for that. I can also see, at times, that they wish it had been a different child they had lost. That is ok, honestly, I sometimes feel the same.
    RIP beautiful JLK, perhaps you are being entertained in heaven by my goofy, wonderful baby brother, Ethan.

  64. Dearest Libby-
    There are no words to express how much my heart aches for you right now. I lost my first son 3 years ago and not a day goes by that I don’t think about him. Someone passed this poem on to me and I want to pass it on to you:

    “As I sit in heaven
    and watch you everyday
    I try to let you know with signs
    I never went away
    I hear you when you’re laughing
    And watch you as you sleep
    I even place my arms around you
    To calm you as you weeep
    I see you wish the days away
    Begging to have me home
    So I try to send you signs
    So you know you are not alone
    Don’t feel guilty that you have
    life that was denied to me
    Heaven is truly beautiful
    Just you waitn and see
    So live your life, laugh again
    Enjoy yourself, be free
    Then I know with every breath you take
    You’ll be taking one for me”

    I did want to share with you that I purchased a necklace that is “cremation jewelery” that is a beautiful heart. I have my sons hair in the heart and I have worn it every day since I got it. I kiss it, I hold it, I rub it and it offers me some comfort.

    I believe our children are up playing in the clouds, laughing, singing and dancing the day away!

    xoxo
    Jennifer

  65. When I read your post of her passing, I didn’t shed tears that day…I sobbed…really sobbed for a family I have not met. I sobbed for you as a mother and the gift of being more “humble” you have taught many of us through your words. Cry and be mad, you should be…because you lost part of your heart. Write and let it go. Do what you need to heal and take all the help you can get, because I can read how strong you are and how it bothers you to ask for help, just do it because it is your turn to be cared for. You are so amazing and all that amazing you have in you will continue when you are ready. Libby, you spread passion and courage, it’s a gift. When you are ready, you have this soldier on your crew.

  66. I hear you.

    I mean I really, really hear you.

    Your words resonate and I feel each one of them. Again.

    I felt them years ago with my own precious Olivia. Fuck you DIPG.

    I’m listening. And I’m so sorry. For our children. For our hearts. For the world’s loss.

  67. I wish I could wrap my arms around you and give you a big hug! I can’t imagine the pain that you are experiencing right now. My heart goes out to you and your family! There is “No Logic” with the loss of your daughter. I don’t have the answers, I wish I did. I lost several babies. Our little girl lost her heartbeat in the womb. It doesn’t compare to what you are going through. One book that helped me was, “Heaven is For Real”. When the time is right for you, I think this would be a good book for you. It will help give you some peace and comfort.

    Thank you for sharing your story and your emotions!

  68. You loved her more than the very breath you breathe. Just breathing now is being strong. I wish I could ease your pain. But I do send thoughts of comfort and peace, and hope one day you and Tony and your 3 little ones find peace and keep it always with you.

  69. Losing a child is the most F’ed up thing in the world. I watched my Mom lose my Brother to cancer. I held his hand as he took his last breath, we did hospice, and morphine and all of the horrible things that come with cancer. I know how you are feeling and you are right with the way you feel. It’s horrible. Wishing you and Jennifer and the rest of your sweet family love, peace and comfort as you navigate through this devastation.Deep breaths.

  70. You are so strong, Libby. So, incredibly strong.

    There really are no words. Nothing (for the time being) that anyone will say will help the ache, the anger, the uncertainty, the fear, the sadness, the darkness…

    But there is light..you will start to see light again one day.

    My mom and I were talking about your story today. I told her I could not imagine the pain that you are going through, and that I do not know how it is possible to overcome this. My mom said, “I don’t believe you do. I think you just allow time to pass in between.”

    Time heals slowly, but JLK will never be forgotten.

    You are so strong, Libby. <3

    We are all crying with you. We are all praying for you.

  71. Father in Heaven, please carry Libby and Tony through this journey. A journey no parent should have to embark on. Please give Libby a sense of peace knowing she is in the right however she grieves. Please give her a sign that her Jennifer is okay and home with you. Please fill her with understanding that the only person that could love her just as much is you Father and that their family will be whole again one day. How we ache with you Libby. How we feel robbed…

  72. My mom lost my brother to brain cancer two years ago. A middle son. Her baby boy nonetheless. She and I put flowers on his grave for his birthday on the 10th. He died at 41. He was the adventurous one, but out of four children, he was her best friend. She cried and we talked of how we are still in shock it happened at all. I have a 6 year old boy and ten year old daughter. My sons birthday is a month after sweet Jennifers. I ache for you both as a mother, caretaker, and sister in Christ. Just breathe and keep cussing! We cuss cancer a lot! Feel it all sweet mama. Let others do for you as much as you can. And know that all of us strangers will take some of that pain for you when you can bare no more. I miss my brother terrible but, her siblings will remember all the love, grumpy sibling rivalry times, and experiences as a family they shared. Not just the sad times. Sounds will fade, slowly it will seem. Nightmares will come and ease to sweeter ones. My siblings and I dream about my brother more then my mom still but it is easier for her that way. Listen to those sweet little ones when they tell their dreams to you. Love & Blessings to you Libby and family.

  73. Fuck you cancer! Go to hell! Stop robbing innocent lives and families from being whole! I feel angry now. Something has changed in me in the last hour. I am so angry for Jennifer, for Libby, for tony, and the two brothers and little sisters. They’ve been robbed and I am just angry. This should have never happened! I never met Jennifer but I feel like I have- such a beautiful, innocent child full of life. This is bullshit. I want to take this pain from
    Libby and I can’t… Maybe that is why I am so angry. I feel just as helpless as Libby did in Jennifer’s fight and I just want to break things and scream.

  74. I am so deeply sorry for your loss. I remember reading something from a family who lost their little boy to cancer. They said that they have to grieve him as fiercely as they loved him. I wish you as much comfort and peace as possible right now. Sending love.

  75. I read this tonight on the couch with my six year old daughter by my side. I’ve known the sting of death of losing siblings to cancer and SIDs and AIDs. The pain of each one comes rushing back as I read your story, Jennifer’s story, and tears roll down my face. My daughter wanted to know why I’m crying and we look at beautiful pictures of your sweet little Jennifer. And then look at pictures of my beautiful siblings who have gone before her…David, Ashleigh, Derek, Ariana, Yolanda, Perry, and Alyssa. They have all been made whole through death and for that I am thankful, yet I will never forget the lives and especially the last moments of each and every one of them. And now your sweet Jennifer is up there having a princess party with all of them. It brings joy to my heart to imagine the scene and yet sorrow to my soul to know the sting of death. I still cry all the time, although I try not to do so in public. You do not walk alone in this world or the next. I pray for you and your family, that you would know that Divine peace, because it’s the only way we do feel peace amidst the pain. God’s peace to you sweet Christian sister!

  76. Hi Libby, I just wanted to say that as many others I am here and listening. And going through some of this nightmare with you. It is beyond words horrible what had happened and is happening in your life right now. I don’t know you and only know your story through this blog but I feel like it has changed me forever. My kids are the same age. (a 6 year old girl and two younger boys, no baby). And the fear of losing them is very strong. I can only imagine that I would completely fall apart if this happened to us. Not sure how I would go on. These words are probably not helpful at all, I just wanted to say that I hear you and understand you. And I will continue reading what you share with us.

  77. So much love to you, Libby. I just want to wrap you up in the biggest, warmest, never ending hug. I wish I could take some of your pain. No I wish I could take all of it.
    I have a vivid memory of you wearing Jennifer when she was a teeny tiny baby. I think you we’re cooking dinner. You were radiant. You are radiant. It has always stuck with me. I will carry you and Jennifer in my heart.
    And I will wear my Love4JLK shirt until it disintegrates. I send you love and prayers and hope for peace. And I’m sending you my biggest, warmest, never ending hug.

  78. I was in a car accident along the north coast many years ago. I was waiting in an ambulance near the entrance of the emergency room. I was ok. But the ER was busy. You see there had been another car accident on another nearby two lane highway that day. A teenage girl was driving. Hit an oncoming car going around a narrow twisting turn. Killed instantly.

    I did not see the girl. But I saw her mom near the entrance of the ER. Their priest had come to walk in with her. It had not sunken in for her fully what had happened. She was saying louder and louder until she was screaming, “Where’s Tiffany?”

    And then screaming, “No. No. No. No. No. No…” It was like the shaking scream of an animal, primal and haunting. She fell to her knees. Fell down in front do the ER door. Afraid to go in. That screaming… They got a wheelchair for her. I could feel her grief and shock from yards away. It haunted me for years.

    Libby a mother who loses a child must feel a pain that no one can ever understand. It must be worst there ever could be. Please be gentle with yourself. No room for guilt. Everyone else can take care of everyone and everything else. For as long as you need. Easy for me to say.

    I am so sorry.

  79. I’m so sorry for the pain you are experiencing. Please know that we are all crying with you. Your words express your emotions so well it’s so hard to read because I can feel your grief. Your blog has taught me to love more and cherish each second with my 2 girls. Since I’ve started reading this, I hug my girls so much tighter at night because you just never know. So thank you for that. You and Jennifer have given us all more than you even know. She’s a real angel, just like she’s always been.

  80. Thinking of you Libby… Praying… Crying… I have a 6 year old and I hear you I hear you… I cry because I feel your pain… I’m so sorry Libby, sending you lots of love… #love4jlk

  81. Libby…I just want to say that in a strange way it seems right and eloquent that there is no phrase or wording in our language for when a parent loses a child. It’s bigger than words. It’s holier, too. Love is surrounding you. Glitter too. There are no words to express my deep sadness for this terrible journey you’ve been on. ~Beth

  82. This is so heartbreaking, but I pray that you find comfort in this – from the Bible in Matthew 19 verse 14 Jesus said, “Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these.” – your sweet girl is free of pain, suffering and tears and she is whole and happy – probably bathed in glitter and dancing like a princess! She is loved by her Almighty Father and while I cannot fathom the pain you are enduring, she is surely in heaven and may this offer you a small bit of peace and comfort to know she is OK. Truly – so sorry for your loss. Her larger than life personality – just glows through her pictures. I can’t imagine your heartache.

  83. Libby and Tony. I know it’s been a long time. I don’t know if you remember me, especially with all you’ve been through, but that isn’t important… I just want you to know that Jennifer has made such an impact that she is even well known way over here in Australia. You have so much love and support, all over the world. I am lucky to have met you. All my love to you and Tony and your gorgeous family.

  84. We will be here now and forever on your side as we join your crusade to balance children’s cancer research funding. Right now it is impossible for you to sleep and that is normal. At some point your body will let you do what you need to do for now: survive for your family that is here now. Jennifer is by your side and still giving you her love from Heaven. We all love you and will be here to support you and your family for as long as you need us.

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