dark side

Here is the dark side of what I am feeling and experiencing.

So bitterly jealous.

3.5 months. That’s all we got.

So many other families get so much more time to know…to pack in life…to get things in order.

I know we are making a difference. But how great that difference that would be if I had time to be better prepared? I was just starting to line up things for the foundation…

This was supposed to be the honeymoon period. She isn’t supposed to be gone yet.

And I know..

I know so many families get less time. So many children lose their lives suddenly with no warning. So I get that I am lucky in that sense

Thats why I called this the dark bitter side. I am not proud of it.

But I thought it was the trade off…The trade off for watching her slowly starve and lose all body functions. The trade off for her knowing that the death was coming was the time..

Time to cram in life experiences. Over half of the time we had was spent in the hospital.

…the trade off screwed us.

I feel like having a huge temper tantrum….because

Its just not fair…why do the other parents get more time…

least proud post to date

…dark side…

68 Responses to “dark side”

  1. Libby your feelings are real. Real for a mother that has lost. Real for a mother that has loved. I couldn’t imagine that you would feel any other way. Many of us have voiced how you have changed us. How you and Jennifer have changed us. How your relationship with Jennifer hss ultimately changed ours. You have every right to feel jealous of those that were granted more time. That’s not being dark. That’s being real. You have every right to feel that way and its justified.I guess when we continuously tell you, thank you, for the way you have changed us, I guess we are kind of saying we are jealous of the relationship you had….and their is nothing wrong with that! You are amazing.

    1. Absolutely Melissa….again I agree! Libby you are totally justified in feeling this way. ((HUGS)) The darkness is something I still experience. Its a part of who you and I are now…and I love you because I’ve spent my time in that place too.

      I’ll sit with you quietly….just know I care!

      Kristin

    2. Dont feel bad for your feelings. You are amazing. I pray i am half the mother you are. As a mother of a terminally ill child I have been feelling so bad. I feel guilty that Johnathan is doing so well while I watch so many of my friends babies pass.
      We are praying for you and your family.
      Love Rebecca

  2. I love you. You’re so strong, even when you claim to be broken. You’re an inspiration to me and so many others. You have such a loving heart… I wish I could think of something cleaver to say but nothing comes to mind….
    Rip sweet angel baby Jennifer Lynn

  3. Libby, I think this feeling would not change even if you have had 5, 6, 12 months or 3 years ahead. Because we don’t want to accept limitations on the time we want to spend with our loved ones and definitely not on the time to be spent with our children….we are supposed to go first…that is all we know. The feelings you have are natural, you miss your child and you wanted to have more time. I guess a mother who loses her child in a traffic accident suddenly is jealous of your 3.5 months and would give anything to have that at least….it is just how a mother feels:don’t take time away from me. Maybe she would have suffered way more if there would have been a longer time… Time is endless in her world now and one day you experience this endless time too…until then it is ok to feel jealous. Don’t forget you did what you could as a mom and Jennifer knows that. Dark side’s are there for a purpose, it would be difficult to know the bright good side if there wouldn’t be any dark one.

    1. Beautiful Zuzana. Libby I hope her words help. You are moving through the stages of grief in your own way and quite gracefully. Your family is blessed to have you as was Jennifer.
      I know each and everyone of your followers would do anything to ease your pain. Please allow our words, caring thoughts, love, support and concern be what you wrap around yourself in those “dark”, sad, lonely
      times.

  4. Don’t be less proud of this post. It’s raw & honest and it’s part of the unfair truth of what you were dealt. I am so very sorry that you have to grapple with these feelings. But I want to encourage you not to stay long with these feelings. Libby, through this whole journey, you have been extraordinary in your strength & ability to remain in the present and enjoy the life that Jennifer had left. I believe you found meaning & beauty with your daughter in even the smallest moments – whether it was in the hospital or not. It would not be fair to any of those truths to “Monday morning quarterback” your choices now! Try to remain in the present and protect those memories of JLK’s final weeks as they truly were – a Mommy fighting so hard, to do the very best you could possibly do. Sending up prayers to comfort you and your whole family.

  5. There is never enough time to prepare for the loss of a child. And while we can be confident your daughter is in heaven rejoicing with God that doesn’t remove the pain you and your family are experiencing. Every day since I’ve come across your blog I’ve prayed so sincerely for your family. There hasn’t been a day that I haven’t cried tears for you. Everything you are doing to fight for childhood cancer is so amazing. And your blog is so powerful. My prayers have become so much more genuine for people who are experiencing loss and I have been compelled to do more . I join you in this fight to raise more awareness and to fight that the government spends more. I’m so sorry for your loss.

  6. Libby of COURSE you feel like this. I haven’t lost a living child, but I’ve had five pregnancies and only 1 living child. And I tried for so long to hold the bitterness and jealousy off, I really did. But then I finally gave into it for awhile. A long while. And I still struggle sometimes. I’m not saying this to say that I know exactly how you feel because of course I don’t. I’m just saying that I think these feelings are completely natural and to be expected. Not that it helps you right now because words can’t help but just know you are so cared for and loved.

  7. Libby, your are entitled to these feelings and I wouldn’t have the ounce of strength and grace you have. It isn’t fair and it sucks. Everything about this is the dark side and I am so sorry you, your Family and your sweet Jennifer are going through this. All my love.

  8. No time would have been enough. Your 3.5 months were a blessing and a curse. A blessing because you got to live life experiences with her, hold her close, show her just how much you love her, and you know she isn’t suffering anymore. A curse because it was so incredibly short. No time will ever be enough. Love and prayers your way.

  9. Don’t be ashamed for what you feel. Honestly I am sure most of us in your community feel the same way. I know myself I keep saying in my head “Wait what happen to 9 months” . It’s crazy that 9 months seemed so short, now so long. Your not minimizing anyone’s experience by feeling sorrow for your own. Of course no time is enough, but when you prepare your head for a certain amount.. And then it’s so much shorter..your right it’s not fair.

  10. There is no amount of time that would have been better if the result was going to be the same. But I can understand desiring to have more days to “pack it all in”. A lifetime of memories into a few, cruelly short months. In your position I would have sold my soul for my daughters life, as I’m sure you would have, and you did what was right for your child. Your plan, absent a miracle, was the perfect one for Jennifer.

  11. Libby,
    I think a lot of us have thought “Why couldn’t Jennifer have more time?” It’s not fair. None of this is fair. Your feelings are your own, and there is no shame in wondering “Where did the other 5 1/2 months go?” I wondered the same thing about Jennifer. I think all of us who prayed and begged God to save Jennifer wondered why. So you are not alone in this thought. You have made Jennifer real to us all and we love her because of you. As you grieve you will probably wish it had been some other kid, it’s nothing to be ashamed of. We are parents and none of us wants to lose our own child. We love you and your blog, and we expect to keep it real. Real means what you feel may seem selfish, but it’s not selfish at all.

    Crystal

  12. I’m all for temper tantrums !!! You deserve to be angry as hell, Libby. It’s NOT fair. It will NEVER be fair. Anything that might help you is perfectly fine, as far as I am concerned.

    I had mentioned Kate Leong in my previous respons on your last blog. She is an amazing women, who lost her son, Gavin, very suddenly last fall. I know for a fact that she would be there to talk or listen or whatever you need. She is an amazing, sweet, strong woman 🙂

    Much, much love to you Libby <3 <3 <3

  13. you have done right,andyou should fell everthing your feeling its ok.. i have read your blogs and cried at each.. your daughter is so beautiful just like her mommy.. wish ther was something to help your family at this very hard time…hugs

  14. I see nothing wrong with a huge massive toddler style temper tantrum. Go chuck ice, scream and kick into your pillow, whatever it takes. And do it again later if that helps you in some way.

    There’s no rules in grieving the loss of a child.

    Be kind to yourself. 🙂

  15. Hi, I just wanted to say that your feelongs are so incredibly natural and you are brave for being so open and raw. Although you do not know me, and I don’t know you, you hsve made such a difference in my life. As a stay at home m of three I’ve taken time with kids for granted. This weekend my daughter asked me like always to spend time with her. In her six year old mind I’m sure she thought I would say not now, later.I’m busy. Instead I got down to her level and said, absolutely let’s go. I wish I could say its normal behavior for me. Its not. I wish I could say I did it on my own. I didn’t. I did it because of you. Because your story is a gentle reminder in my head. Because your six year old culd have been my six year old. I just wanted to share with you how you have changed me forever. As a mother. So you go head and write anything you need to. Hugs.

  16. Scream cry and stomp your feet-because at the very least you deserve to that. And please know that if this is your least proud moment….YOU ARE AMAZING! You are feeling all of the normal-HORRIBLY NORMAL feelings a parent who loses a child will feel. We are here to support you-even if its from a distance. Many hugs!

    Erin

  17. Libby, all I can say is I don’t think there is anything wrong or shameful about what you are feeling. And I know you said this is your least proud post. But to me it is raw, real, and honest. All my love to you and your family.

  18. Still supporting you through all the seasons. I’m just knowing that you are making a difference, as your daughter still is too.

  19. Libby, you totally got screwed. No doubt about it. That’s the one thing I would love to understand about DIPG is why some cases are SO aggressive and others just aren’t. It makes no sense to me. You’re feelings are completely “normal” under these circumstances. I’ve felt them too. They don’t make you a bad person Libby…they make you normal…..
    Nikki

  20. Libby, As a spectator to your story, I asked the same thing to God. Why did she have only 3.5 months. I counted Oct-Feb over and over… she was suppose to have nine months. I know the docs just give the best information they can.

    Jennifer was cheated out of so much.

    And you were cheated out of the limited time you knew she was going. Why??

    I just continue to pray that she is dancing and you find peace through the Holy Spirit.

    Many blessings…

  21. You have every right to feel cheated, jealous and extremely pissed off. Everything about this situation is so unbelievably unfair. Be kind to yourself. Many would be handling it so much more graceless, myself included. Grief is an unpredictable monster.

  22. Libby it is ok to have these feelings and to be mad.This disease is so unfair and unpredictable.I’m sure you feel extremely cheated on the amount of time you had.I can tell you I was one of the lucky ones, I can only say that now after reading yours and others stories.It doesn’t make it any easier when you lose them later in the disease.I had twenty six months and I was no more prepared than you.Like a lot of parents I thought mine was going to be the one to beat it.I don’t understand why some make it longer than others. I get mad just like you thinking I put my poor baby through all of this thinking that in the end it would all be worth it.I was able to have lots of good times with mine but the last six months of her life were horrific to watch.We shouldn’t have to lose our children at all.Sending prayers your way.

  23. You have every right to feel that way. It is not fair. My heart goes out to you. You are doing great things. She will be so proud of you. But dammit, it is not fair. It sucks. I continue to pray for you and your family.

  24. You have every right to feel cheated and angry. I feel it too. You were cheated. Jennifer was cheated. It’s so unfair. So very very unfair.

  25. My girlfriend and I recently had a conversation about the good and bad regarding a loved one dying suddenly, opposed to having time to say goodbye (a diagnosis with a predicted amount of time.) I lost my mother suddenly, finding her passed away in her living room. And the thing is, either way, I wouldn’t want her gone. I feel like there are things to be grateful for. I didn’t watch her suffer, she didn’t have to be afraid of her impending death. AND mouring starts right then, it isn’t drug out. But at the same time, had we known we could have said things, IMPORTANT things that we wanted to say. Hugged each other more… I don’t know. Losing your heart f-in sucks no matter what. You had some time to make magic for Jennifer, and while your heart has been ripped out, and her dying is about as wrong as anything could possibly be, at least you did have that. I don’t know what it is, but the picture of Jennifer with the fairy god mother at Disney World just makes the tears spill. There is something so deeply moving about that moment.
    Libby, just feel what you feel. I’m sure you’ve got a universe of swirling, sickening, beautiful, angry, and miraculous emotions going on inside that mama mind of yours right now, and I know that NONE of them are wrong. <3

  26. Your feelings are absolutely valid. It’s not fair, it’s horrible and unimaginable, the pain of losing your little girl; with warning or not. Be angry, feel jealous and cheated, it’s okay. Your journey is your journey. I understand feeling guilty and shameful, it speaks volumes to who you are as a person and a mother. Just please know that nobody is judging you for being angry. We are angry too. We are angry for you and with you. Know that it’s okay to let the guilt and shame go. You have enough to shoulder without adding those feelings to the pile.

  27. It’s going to be dark. It’s gonna get darker before the sun shines again. Nobody’s gonna fault you for writing what you feel. (Or if they do, well – whatever.)

    *Just so I don’t get beat up, I speak from experience – having lost my own daughter to a DIPG.

    There’s only way to get through it. And that is through it.

    I wish we could go around it…but we have to go right through it. We’ll be here holding on to you as you do.

    No judgement. Just love.

  28. It is very unfair, you didn’t get enough time with her 🙁 but I am glad you packed in as much heaven for her on this earth with the Disney trips and Santa rides, etc

    Love you mother of JLK and big hugs
    Prabha

  29. Gosh, you are truly too hard on yourself. Your responses to things all seem so reasonable to me. Stop beating yourself up for being pissed that you didn’t get as much time as you were hoping for. Stop being mad at yourself for being jealous that someone got more. It’s okay to be pissed. It’s okay to be jealous. It’s okay to not want to shower. It’s okay to grieve just as you are without feeling guilty that someone might be upset at you. They can figure it out and if they don’t then it’s not something you can fix for them. Grieve, without guilt, just be.

  30. I’ve had these exact same thoughts, and I don’t even know you or your daughter. I’ve looked at DIPG websites and wondered why Jennifer didn’t get her full 9 months. Or even a year or two. It IS unfair. You didn’t get the time you thought you would and you should not feel one bit bad about expressing that. I keep thinking, she was supposed to have more time, to have spring and maybe a little of summer. Please do not feel ashamed about anything you feel. You and your beautiful family have touched so many people in ways you can’t imagine.

  31. Libby, you’re entitled to whatever feelings you have, no matter what. There is no manual for grief and I wish you peace as you try to navigate your own way in this. Huge hugs. I wish I could give you one in person.

  32. I have so much admiration for you being honest and open with the darkness in your grief. I wish I had had the strength to do that. I did have the temper tantrum though! The anger that felt so physical I had to smash things just to release it. And your strength and openess and honesty have helped me to reflect on my greif and not feel so much shame about when it took a shape I was not proud of. If I could I wouldn’t take away your grief, not for a second because it is yours, but I would take away any shame or guilt you might feel about it at any moment. And I would replace it with love.

  33. Don’t you ever feel bad for feeling the way that you do. I think it is fair to say that most of us have had temper tantrums over FAR FAR far far less. Most of us have never been where you are, and if anyone would dare judge you for raging at the world right now, well, I would have to kick them in the shins. hard. There is no right way to grieve for your baby. Yes, other people have had it harder, but this is YOUR story, YOUR pain, YOUR life. My youngest was in the NICU for a brief time. He was fine. I didn’t think he needed to be there, and I was pissed off that our bonding time was being messed with. Then I thought of all the families that needed to be in the NICU and I felt like a selfish bitch because in the end, my baby would be fine. The nurse reminded me that I had a right to those feelings, regardless of what anyone else was going through. You most definitely have a right to feel your feelings right now. dark, light, whatever they may be, however they may come.

  34. I am so sorry. I can not even imagine. Have you talked to the Vogel’s of http://www.getwellgabby.org ? Gabby didn’t get much time either. They did the radiation and it didn’t buy them time. I remember them also being so hurt that she didn’t get more time.

    I am truly sorry for your loss.

  35. Libby I agree with you. How cruel life has been to your family. You are justified in every feeling that you have, no-one can judge you. There is a silver lining that Jennifer did not suffer for too long, but I can’t help but feel the bitterness for you too. Grief has no rules. You have outdone yourself as a mother, don’t regret any of your feelings. Jennifer and your other kids know much you loved her and love them dearly and that is all that matters.

  36. I thought about that too. But those 3.5 months were packed with such love and an awesome time of year! Her birthday, Halloween, Thanksgiving, Christmas. The time of the year when we celebrate family. She got to experience all that and feel the love. And her summer was spent swimming and loving life, and being a little girl.

    All that, a blessing and a curse. But yes, you were f’ing cheated.

  37. Libby you are totally justified in having a tantrum. You have every right to feel cheated- you were. Maybe the purpose of losing Jennifer has been addressed already- maybe it hasn’t. But you my love, need to address your grief, the guilt, the what ifs… However you need to do that will not be judged.

  38. Dont feel bad for feeling the way you feel as a mother you have the right to feel or say what you need to say or feel because its not fair for a mother to lose her baby. As a mother myself I share your pain

  39. I agree with other posters that guilt cannot play into this. You didn’t get enough time with her, and she didn’t get enough time with you. It is so dismally, enragingly unfair. You are completely justified in your feelings. Bitter, jealous: I feel these things too on your behalf.

  40. Libby – I hear your hurt. I hear how you are feeling. And we all acknowledge that is the way you feel. I want you to know that we do not judge you for feeling any way that you feel. And we do not judge you for the jealousy and anger – I understand those feelings. It is okay to hurt. More prayers and love for you and your family.

  41. I completely understand the feelings of being jealous. My mother died just over a year ago from cancer, and I am so jealous when I see mothers and daughters together, happy and healthy. It’s not that I want anything bad to happen to them, it’s just I so desperately want my mother here with me. Also when people tell me, she’s pain free now and no longer suffering, that really doesn’t help at all…I still haven’t come to terms with why she had to suffer in the first place! My heart aches for you and your entire family.

  42. You say it girl!! You are right!!! I believe in God but I do get mad as heck sometimes!! You’ve been ripped off!! He might of had a big purpose but why with her?!! After you fought so hard just to have her!! We are mad and jealous with you!! Know that in the deepest darkness the tiniest of light still pierces it. Your love is that light. Nothing can take that away. Nothing.

  43. <3 You're amazing for sharing this. And you're not wrong for doing so, so I hope you don't allow yourself to feel that way for long.

  44. Oh mama. Dark must surround you. How could it not? The grief you now carry is as great as your love for her. And oh what a love you all shared. You should have had more time. She should have had a long long life. Never this. Never ever this. Whatever feelings you have, may you never feel rushed to put them aside. Never. Not in 6 months, 6 years, or 60 years. I only wish that in the midst of the dark, a dark I can not even begin to fathom, may light and even a little glitter somehow find it’s way in.

  45. Thank you so much for sharing your experiences with me. I am horrified for your loss and for everything your daughter lost, and I am so glad that JLK had you for a mom. I am glad there are moms like you in the world. I am glad Jennifer was here, and so sorry that she is not here now. I am praying for heaven.

  46. I never knew Jennifer but through your words I felt I knew her. I first saw her on those truly magical glitter shots , in her pink dress. I saw your pain Libby, no mommy should ever feel such devastating, heart breaking , soul emptying pain. I fell in love with the narratives of her sweet, selfless nature, and that smile! Gosh , that smile (specially throwing all that glitter around)! It is OK to feel such incredible loss, you are her mommy, and I feel she was your little soul mate: a connection very few have with their own child. It is ok to be angry, jealous , dark , you have the right to feel and express your sorrow any way you feel is best. I am angry, am sooooo sad, my heart is heavy for you Libby .I cry when I read your mommy story and see the pictures, and because of your love and devotion as a mother I have taken my mothering a step higher(truly). Words mean so little, I will continue to follow your blog , please know that I think of your Glitter Princess and your family, you all are in my prayers.

  47. You are allowed your dark side! You are allowed your bitterness. You are grieving. Please be nice to JLK’s Mommy, she’s amazing. You are allowed all you feel and you have a place to share it and we read and we listen and we still love you!

  48. Libby
    I follow Huffington Post Parents and a mom just posted conversations she wants to remember with her 5 year old daughter, the baby girl she lost to DPIG. She is not quite as eloquent a writer as you but you may find some solace in her story.
    Thinking of you always.

  49. Dear Libby,

    🙁

    I don’t think its fair or right of me to chastise you for being mean to yourself, but I do hope that in this time of your incredible need you remember to try and be sweet. That Libby feeling these things isn’t trying to wheedle some toy or melting down over some innocuous slight, if ever there was a legit reason for a ‘tantrum’ its something like this.

    You mention not being proud for feeling intense rage, darkness, longing and jealousy, and the impulse to throw a tantrum…I can’t help but feel like most of that is what we’d be feeling with a loss like yours.

    I know I would.

  50. You did get totally screwed. And it is unfair. And it’s okay to feel that way. Only thing that makes you different than many others is that you are actually saying it. I highly recommend a bigass hissy fit if you need it. Sometimes they help a little big. <3 to you all and still sending up prayers.

  51. You are absolutely entitled to feel that you were robbed of her too soon, because you were! Thank you for sharing your beautiful Jennifer with all of us and we are all praying for you and sending you our love. God is watching over all of you.

  52. Praying for peace & comfort.
    It isn’t fair…not in the slightest. and there’s no answers to why. but dear sweet momma, you can feel any way. there’s no right or wrong way to deal with this. I’m sure I’d be jealous if I were in your shoes. I look at my children & wonder why your family. You use this as your outlet & never worry about how you “should” be handling anything.
    I pray for your family daily. I pray you cry out to Him during these hard times and He eases your burden.
    all of us out here send so much love & prayers for you & your family.

  53. When one of our children gets a little boo-boo and cries endlessly, we don’t tell them to stop crying or hurting because the kid down the street got hurt worse. We validate them. We kiss their teeny boo-boo and stick an unnecessary bandaid on it to make them feel better. Then we remind them how much we love them. We do this because we know in that moment, they are hurt. And without comparison to anyone else, they needed to cry about it and have someone fix it. In this moment, in YOUR moment, you are hurting and you are validated in that hurting. Unfortunately there is no bandaid big enough for this hurt, and for that, I am sorry. Sorry and helpless. But know that this whole community, this whole JLK glitter squad of followers on this blog, is like a mother standing in front of you, wanting to love you and make it better. We will sit here patiently, with love and without judgment, as you go through this. Because it’s not fair. No matter how many others are out there hurting, for YOU, this is not the least bit fair, and we’re all mad as hell.

  54. I don’t want to upset you but be prepared for this for a while. The bitterness will come and go, but you will be able to cope with it and understand it comes from a deep chasm of love within you, for your daughter. I will be praying for you.

  55. You throw that temper tantrum!! You scream at everyone who got one minute more!! You should be so proud of your willingness to be so very honest. It is what we would all say yet maybe not have the courage. When I lost my cousin and my dear friend’s sister lived I was so PISSED OFF!!! Are you kidding me!?!?! I didn’t want her dead but I wanted a fairness that just doesn’t exists… So I beg for answers and what I found in my faith was that all loved ones were sent here by their Father our God… He sent your baby girl my 5 babies, you, me, our parents… Everyone.. And there comes a time that He wants his children home.. With Him. I couldn’t find one word of WHY!!!! Why He would be so selfish when we want them here!!! And why do some get to stay like my best friend and 98 year old grandfather and some like my beloved cousin only get 38 years or like your baby girl 7 years… I came close to losing my first born to a stroke and menegitis… The pain was like your whole body being ripped apart limb by limb organ by organ but surely even that would have felt better. SO THANKFUL he survived can’t imagine enduring that horrific pain… Not for one minute longer. I did come to terms with life those weeks we waited for life to win. I loved it… I loved life and all those in it that I couldn’t possibly live without… But I do- sometimes… Sometimes I throw a major league temper tantrum and that is now part of my new normal with each person who beats what took my Carla… And I know her Father, our Father wanted her home… The street lights came on and home is where she went and she is with HIm now safe and happy and some days that works and others it does NOT!!! So be thankful when you can and ask for forgiveness when you cannot. Either way you are my hero and today because of you my 5 children will get a very special kind of love from me… The kind that we sometimes forget to share when we forget that “I cannot breathe I am dying” pain. I thank you for your God like courage… I have no words to share my sorrow for you. I with all my heart hope the lives around you needing you loving you are enough to keep you from dying of a broken heart… So thank you my hero and may God’s blessings nourish you and sustain you until you hold her in your arms again…

  56. Thank you for your honest words and for being an inspiration to so many of us. I cry every time I read your posts. I cry for your lose, for the beauty in your relationship with your daughter, for the strength you show in sharing your every thought. I cry thinking of my daughters and wondering what more I need to do to show them the same kind of love you have shown your daughter. Thank you for reminding me what is important in life. One of your friends stated you changed them for the better. We do not know each other but you have changed me too.

  57. Do not ever be ashamed of those feelings. It’s true, some families get more time after a diagnosis. Some families get a whole lifetime with no disease, and see their children grow to adulthood and give them grandchildren.
    People can say that the loss makes life more precious, or that pain makes us see the good things in life…but those aren’t the right things to say to a grieving person, even if you believe it.
    The only thing I want to say to you is that it’s not fair. It’s not fair and I’m so sorry.

Leave a Reply

Your email address will not be published. Required fields are marked *