I am a living breathing nightmare.

“I’m sorry you are living this nightmare” 13301784634_a78ab51758_b

That’s the only words I have for other parents when their children die.. I can even say it when its been years and years .. I am going to venture a guess.. by the hollow I see exposed when they know that I truly know.. think its still so very true.

Kids were really tired tonight so they all went to bed early. Gave Tony and I a chance to just watch some mindless tv..

or not.

**looking at this picture.. I realize the bag I have stuffed full in my closet of her death memories is this bag**
**looking at this picture.. I realize the bag I have stuffed full in my closet of her death memories is the bag behind her**


Modern Family.. a comedy. Little girl wearing the same Belle costume my Jennifer wore on her birthday.. the one I had bought and saved for her.. knowing it would be the perfect birthday present. The day we found out she would die.

Then Criminal Minds… a character close to death.. I can’t help but tell him to go.. Tony can’t really get mad that I say it.. we both feel it.

Every night I nurse baby Charlotte to sleep and think (sometimes say) one day closer to you Jennifer. It actually helps to look at it that way. Like every contraction in labor … is one less you have to endure. Thats what life looks like inside my head.

I love my 3 living so I feel horrible admitting that.. .the pain is just so awful it makes me that selfish ,I would take her back.. in pain.. and I would leave them … in pain losing me.. the ache is that intense.

Sometimes though.. my mind wanders past my one step closer  to her… amazing how songs constantly change.. That day. Listening to these lyrics before speaking at her services it was a song that spoke to me of strength.. now it speaks to my agony.


.. and when my mind wanders. And I think about how many more years.. years piled on top of years..

I’m terrified.

Last night after support group we went out for our usual dinner together. It was good. I was feeling really ok. For the whole day I had been feeling ok. Which was a complete high after the lows of mothers day, the 3 month anniversary and charlottes birthday.. as well as the anticipation of those 2 days… I was emptied.. and after that buoyed.. just above the water.

..til dinner. That young girl that I saw the first time we went out..she had a feeding tube and a bald head. Last night .. a shirt that proclaimed her use of radiation.

I so desperately wanted to go to her parents.. to connect.. to say I understand .. I am part of this cancer parent club.

I can’t.

I am their nightmare.

What could I say.. my daughter had cancer. .. oh what kind? DIPG. How is she?

dead. ..

So I sat. And cried.. lamenting that I was forced to join the ranks of these cancer parents.. but am unable to commiserate with them.


I lost so much of my identity when she died. Mom of 4. Adoptive mommy. Celiac mama.

Jennifer caused me to join so many clubs..the best one ever.. the most important one I have ever and will ever be part of..she made me a Mom.. Then adoption. . then celiacs. I was always open about our journeys.. always noticing other families in the same situation. Happy to share stories. It helped .. to connect.

Now .. this new club. Cancer mom.. I feel like the black sheep. I feel like I don’t fit in anywhere anymore..

I’m not just a mom anymore. I am a mommy whose kid died. I used to be a person who people came to.. for advice with all of the things we experienced. . and for raising 4 wonderful kids.. But not now..

..see now I am mother to dead kid.

That changes things.

The one thing we are supposed to do…the most singularly important job of a mom . . keep them alive.

Outcast in the cancer world..

and the real world.

.. . damn.. ..

I’m not just cancer parents nightmare am I

.. I am every parents nightmare . ..




48 Responses to “nightmare”

    1. Libby, you are strong! Stronger than you can remember at this time! Love and prayers to you <3 keep getting it out, we are here to support you!

  1. I usually have a great big sigh when I’m done reading your thoughts for the day…..and then I pray. The fact that there is nothing to say to make it better, always brings me back to sighing and thinking about how much bad stuff there is in this world, and we are all hoping and praying it doesn’t happen to us….. or anyone we know….. Or at all…. I do know one thing for sure though, and that most of us listening to you, praying for you and just plain sighing for you, know that you the ability to make a difference in the future for someone else……and you will be their angel.

  2. Your story is every parent’s nightmare.
    But you?
    You are one of the only reasons anyone could feel any hope in an impossible situation! You are amazing! You have done great things already! Jennifer is amazing! She will continue to do amazing things! Thank you for sharing yourself, and your beautiful girl with us. We are all changed because of her!

  3. Libby, you are a certified, card-carrying VIP member of The Moms Club. We would shun you never…In fact we are honored and inspired by you.

  4. Libby, I had to read every line of tonights blog twice. I had to soak in your words. Gives me such a heavy heart to hear you feel this way….but I completely understand how…..not as a mother to a child that has passed, but as a mother whose nightmare, yes, you are living….I am more than just sorry…

  5. You want to die, but yet you still have so many reasons to live! Such an unfair balance for a mother. You are most definitely not alone. I see it in my own life with my mom. As one of her living kids, I both understand and hate that that is her reality! I want her to live! But she has lived through my worst nightmare, and if it was me, I’d probably want to die too. Please know, your not wrong, or mean or unreasonable. And you are most defenetly not alone.

  6. A horrible club to be in, but that doesn’t mean you don’t fit in the other clubs. So many parents, moms especially, look up to you and are being better moms because of you. I am included. I don’t think of it being like a curse that would rub off. I think of it as a blessing to be more aware. You still have those experiences as adoptive mom and celiac mom and cancer mom. You can and should still share them. As always, keeping all 6 of you in my prayers.

  7. Libby, you are not anyone’s nightmare. You are an amazing person going through and incredibly , words can’t describe , hard time. Keep on sharing. We ALL are reading and hurting in our sort if way with you. You will fit anywhere and be loved.

  8. Libby, you are not the nightmare, you are the brave woman, fighting the nightmare, leaving manna, tidbits of strength, for others thrust in a similar pain. I know the exhaustion and pain can seem at times to be unbearable, but I also know that your love will win. Keep fighting, keep loving, keep sharing….for yourself, your four precious, beautiful children, for everyone that loves you and hurts with you.

  9. Not even close. You are an inspiration. Cannot even tell you how much your courage and strength and your darling girl’s story have changed me. (hugs)

  10. Libby, I often feel the same way. I can’t stop talking about my son and his death, because it’s an integral part of me, and I am not exposing my real truth unless that is part of it. But I do sense the hesitation in people when I bring it up…the moment of…not poor mama who’s baby died, but their first feeling before they correct themselves. That they want to get away from me as fast as they can, lest they have to face a child’s death and a mother’s grief. It is everyone’s worst nightmare, and why some of us have to live it and some of us don’t will always be a mystery to me. Keep speaking your truth, because that is the way you will heal. And by heal I mean get to a point where you can get through the days a little bit easier. Call me anytime, sweetie. xoxo

  11. Although you were forced into this new, horrific club…I am honored to be a part of it- The Spread The Glitter Club. I will continue to spread awareness because of you and your sweet Jennifer. Hugs xxoo

  12. Libby, your journey takes my breath away. There have times I could not bear to think about how it would feel to be in your place.. You are right. It is a nightmare.

    Conversely YOU, not your journey, inspire me. You are strong and capable and honest. You love fiercely. I aspire to live life with such courage. You are a tremendous force

    While your journey or story may be a scary one, you have so much to offer the world. Never feel like you are what people fear….you are who we hope we could be in life (and deaths) darkest moments.

  13. Yes, you are living my worst nightmare. No doubt. But like so many others on here I have to echo, you are not the nightmare in my eyes. You are the inspiration within it. You were in my dream last night, we were talking as we went around your house and yard, about Jennifer and your family and this nightmare you are living. When I read your post today I had this weird sensation of feeling like I was still in my dream, it was part of our conversation. I understand what you mean about the clubs you belong to (I read about the club I am in, the unmothered, over the weekend) but outside of the groups, as one person connecting to another person, heart to heart, I am here with all my love and support. And as far as individuals go, you are one of the most amazing ones out there. And I am so, so sorry you are living this nightmare.

  14. If I am having a bad day I think of you. I think … if Jennifer’s mom can do it (get through the day) then I certainly can deal with life aggravation that comes along. You are in charge of the inspiration club.

  15. Two nights in a row, I dreamt about DIPG. Saw little angel faces dance across my mind. You are making a difference. You are making a profound, and I do mean profound, impact. You are still a member of all those clubs. You are still a Mom, an adoptive Mom, a Celiac Mom, etc. No one can, nor should they, fault you for finding some peace in knowing that you are one day closer to seeing your precious Jennifer again. I can’t imagine a one of us, if put in your shoes, not feeling the same way. Continued thoughts and prayers always! I am, and always will be, so very sorry that you are going through this. That this is your new reality.

  16. I don’t always comment, but I always always always read. I don’t know if that information brings you any small measurement of comfort, but I hope it does – to know you have an army of people who read and love you. Sending you peace and love today. xo

  17. True, 46 year old hospice nurse here, many stories and witness to lots of grief and pain. BUT… you sharing these unfiltered raw emotions is helping in so many of our lives. I am applying your insight to help others. The unspoken words that may be in their mind, I now can anticipate and comfort without being obtrusive and assuming, and not relying on textbook knowledge for an A-Z approach, I am thinking og your daughters beautiful bambi eyes and pausing. Your story is deeply affecting me, a total stranger. I moved to a street off longmeadow yesterday, and as I pondered how your day might be going, a white SUV drove by with Love for JLK on it..don’t know if it was you or someone close to your family, but I just wanted you to know, I am in “the Club” that loves a little more deeply, because of you, Because of JLK.
    BTW, as a Hospice nurse, we are all a bit strange to others..thinking of the “beyond” and looking for spiritual signs etc. I KNOW beyond a doubt, I have been at the edge of what comes next..your precious baby girl IS more than ok, and she wants her siblings and Mommy and Daddy to keep the focus on Life, not death..HEAVEN IS FOR REAL”

  18. Libby you are not a nightmare you are a grieving mother who’s lost her child, please don’t think of yourself like that. Were all still grieving the loss Jennifer. Theres not a day that goes by that I dont think of your beautiful Angel she’ll be forever in my heart. I’m here for you Libby for the long haul…big hug and Angel kisses

  19. You and your family have made amazing strides in such a short time! You are not a nightmare you are a wonderful caring grieving mom! Hugs and prayers to you Libby!❤️

  20. Libby,

    Like many women have said already, you are not a nightmare, what you are enduring and will continue to endure is the nightmare.

    We all wish that we could take that burden away, give Jennifer back to you…if only.

    You are an amazing person, mother, wife and will continue to be.

  21. Wow, that post definitely made me think. Think about your pain, your love, your life, your fight, your heart, your grief, your soul, your faith.

    What a tightrope you have to walk everyday with every person in your life. I am so glad you have this blog so you can write your true feelings.

    I dont always comment, but I am always reading your blog. Standing beside you even though I am often times physically far away. You are not alone. Even in your darkest moments you are not forgotten. Sending you love and strength and hopes for a someday peaceful heart.

  22. The situation you are living in is nightmarish, yes. But you are not a nightmare. You are nothing short of inspirational and heroic.

  23. You are amazing. You have shown true courage thru all of this. You are not a nightmare but however going through one. I wish with all my heart Jennifer was here with you. You are an amazing women and so is the rest of your family. You dont know me, but I am here for you and your family. I will always be. For anything at all. I think about you all every single day, especially your beautiful beautiful Jennifer. She is on my mind every single day so much. You and Jennifer have inspired me so much. Made me try harder to be a better mommy. To appreciate the little things more. Thankyou Libby. Thankyou for sharing Jennifer with us and continuing to share your journey. I will be at the run/walk for Jennifer on sunday. I hope I have the honor of meeting you and your family ♡

  24. My words are insufficient. I have tried to leave a message 3 times today and always delete what I’ve written. As others have said, you’re an inspiration. Please know that you are and will continue to be in my thoughts and prayers. As will Tony, Jennifer and your youngest three. Sending love and virtual hugs your way.

  25. The dragonfly necklace. I remember you writing about its symbolism. That is an extraordinary photo–as all of them are. I love looking at her. She radiates so much tangible goodness.

  26. LIbby you are hope to those now and in the future. your making a difference in the world that one day children will no longer get cancer and there will be a cure. You are part of a fight club because you won’t quit. You are inspiring. God bless you.

  27. I am a ten year member of your newest club. I now wear that label proudly, but still, extremely sadly, as well. People don’t look at me with pity as much now, but I still will see that “oh, you’ve actually lost a child” look from time to time. When I tell them it was from cancer, they either ask me more questions or come up with a convenient excuse to walk away. It’s all okay, I get it. Learning that information is tough to hear. I feel much better, but I have changed dramatically and I just accept that this is the new me…and “eff” anyone who judges…I really don’t care. Odd to say, losing a child is in some ways very liberating. You just live and you don’t care. I am praying for you.

  28. You are not a nightmare. Your situation is. I am sorry you are feeling so alone. Thinking of you. Don’t know what to say. No judgement. Just sadness and compassion for something I know nothing about.

  29. Your feelings are so pure so intense that my heart explodes with pain for you.. That you have been forced into such a club is unjust not just for you but for all parents that have lost a child to cancer, disease , abuse, accident just anything… It is wrong it is so wrong but you are not alone and always know you are so loved and so much admired for your strength.. Yes strength!!! You are an amazing mother to 4 beautiful children you will always be an amazing mother to 4 beautiful children xx

  30. Libby, are you familiar with Archbishop Tutu’s Forgiveness Challenge? It’s happening right now (not too late to join) and today was about grief…

  31. reading your blog & so heartbroken for you all. no-one should ever feel the pain of losing a child.

    Thank you for reminding me to stop, hug & breathe in my daughter when she interrupted my busy day, to savour her laugh, to not say no so often & remember what is important in life.

  32. Thinking of you all…..all SIX of you. Big hugs and thoughts of comfort. I’m sorry you have to experience this terrible nightmare.

  33. Dear Libby- your story is a nightmare. but you YOU are anything but that. You are a beautiful person who is gracious enough to share your journey with us, you are a strong mom to your surviving children, you are the best mom Jennifer could have had. You are not a nightmare, please dont let yourself believe that, Sending love, hugs and prayers always <3

  34. Remember your courage to share your journey and decision to donate the tumor, that inflicted your daughter has given other families hope, a chance…a chance at Life…


    Thank you…

  35. Libby tight hugs and prayers go out to you.
    Jennifer what an amazing little girl she is missed.


    Don’t Tell Me

    Please don’t tell me you know how I feel,

    Unless you have lost your child too.
    Please don’t tell me my broken heart will heal,

    Because that is just not true.
    Please don’t tell me my daughter is in a better place,
    Though it is true, I want her here with me.
    Don’t tell me someday I’ll hear her voice, see her face,
    Beyond today I cannot see.

    Dont tell me it is time to move on,
    Because I cannot.

    Dont tell me to face the fact she is gone,
    Because denial is something I can’t stop.
    Don’t tell me to be thankful for the time I had,

    Because I wanted more.
    Don’t tell me when I am my old self you will be glad,
    I’ll never be as I was before.

    What you can tell me is you will be here for me,
    That you will listen when I talk of my child.
    You can share with me my precious memories,
    You can even cry with me for a while.

    And please don’t hesitate to say her name,
    Because it is something I long to hear everyday.
    Friend please realize that I can never be the same,
    But if you stand by me,

    You may like the new person I become someday.

  36. My hope for you is that you quit beating yourself up and realize that you had no control of Jennifer’s illness. You could not prevent it nor stop it. It was not God’s doing because God would never give an innocent child a death sentence. It is not God’s will that you lost your daughter to cancer. God is not cruel that way. It is life. And it sucks. Jennifer’s gift to you, in my mind, was allowing your body to accept babies. Three. Living. Incredibly. Awesome. Beautiful. Children.
    It saddens me that you continue to beat and batter yourself like you had a choice. You didn’t. Nor did your girl. You were cheated. As was she. As were we all. But you Libby, did NOT fail. You can not allow Jennifer’s death to define you. You are a young, vital, beautiful woman with a huge giant life ahead of you. Waiting for your next child to die is like waiting for the next 9.2 earthquake: You miss LIVING! You have to live. You have to make memories for your ‘living’ children. I hate that ‘living’ children part. You have to make memories with your family. It’s really that simple. You have an amazing spirit with you. Always and forever.
    That spirit will NEVER, EVER fail you 🙂

  37. You are a role model, a hero, an inspiration, a fighter, a survivor. You are not a nightmare. You are who I hope I would have the strength to be if I were ever in your shoes. <3

  38. I agree with Kristen…inspiration. I hope u can feel the love I’m trying to send you. In my prayers at about 8 o’clock last night at grocery store. Always reminded to pray you up at the store.

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