Read personal stories from our founder and Jennifer's mommy, Libby, along with other Warrior Moms and news from our Unravel team.

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What’s it like- living with child loss

June 18, 2017

Whats it like? What’s it like to be you?

I see it. I think that is probably the number 1 question I see burning behind people’s eyes that is never asked.

Though it’s hinted to… in the escape of words like I can’t imagine. ..

So I’ll tell you..

It’s showing up to drop my son off late at school.. walking him into the cafeteria to get one last hug as he drops off his lunch box. Something is going on.. lots of kids and fun. Its seeing a mom who asks if I am ready for the craziness.. It’s asking what and hearing that its the 3rd grade arcade day. Its the wonder for just a moment.. until you can feel the ground move beneath you.. She should be in there.. And the gym that was moments ago just 15 feet away somehow becomes miles away.. at the end of a impossibly long tunnel. .. one that you know if you don’t run from will close in around you.

First day of school.. They changed her class after we took this pic. . To end up in the right room with the right friend.. That would lead me to the mom that would truly know and carry me through.. Thank you Brecken.

It’s struggling for weeks.. trying to figure out what to make your husband for fathers day.. Something that includes all our kids.. Without being too sad. Its calling on a friend to help you create something.. because I am too scared I will break apart and ruin the moment for my surviving children.

It’s most days not knowing or recognizing myself.

It’s a casual conversation .. Being complemented on my parenting and making jokes.. It’s being reminded that I haven’t killed one yet.. It’s trying to keep the conversation going and worrying about the person who said it.. If it’s hit them yet who they said that to.. And it’s worrying that if they have.. that they know it didn’t hurt.. It’s statements like that making me wistful for the old Libby. .. the one who used to say the same damn thing.

It’s jealousy. It’s bitter and it’s sharp.

It’s wanting to shake people to make them remember her.. Really remember her. And me. That so much has changed in these 3 years.. and also not a god damned thing. That I am so much stronger and fuller than I was.. but also .. That a piece of me.. A real, a true and important piece of me is holding her lifeless but still warm body. .. and wailing..

It’s visiting a friend at her home. It’s telling my kids where we are going.. That the girl was one of Jennifer’s friends.. It’s the simultaneous chorus of YES and NO. It’s trying to balance two boys with different yearnings. . and their own swirls of emotions.

These boys.. so different and so united.

It’s going there. Its seeing that girl across the island in the kitchen. Its watching her with my entire self. Its a moment that seems to last forever.. And a desire from my depths to just touch her.  To feel the weight of a girl that age, the placement of her head against me.. The length in her limbs..

It’s a howling and insurmountable wondering.

It’s guilt for having not truly visited my grief in far too long. It’s wondering how long it will take me to recover.

It’s loneliness. It’s hating that loneliness. And it’s loving it. It’s needing it.

And it is guilt and regrets.

The perfect message on a birthday card I got recently. Sums it up.

And then its the complete opposite of all those things too.

It is being able to physically feel my love for my children coursing through me.

It is a pure gratitude for every morning that I get to see my children. To touch them.. talk to them.. to know them still..

It is respect for the man that I married weathering the power of this storm we will always be in. It is a safety I never knew possible in his arms.

he adored her .. that’s truly the best word to describe it.

It is finding out I can actually make the gift for him.. One that included all of our children.

It is certainty and it is knowledge.

It is faith.

It is learning and accepting this new me more than I ever have been able to before.

It is truly looking forward to all the things that come next.

It is a drive to simply do good and be good.. Its failing at it but trying again.

Because it is love with such depth and clarity.  Beyond words.

And its questions.. Its me wondering.. what’s it like to be you?

Those reading my blog. That meet me for the first time when I am looking for a babysitter.. or attending one of our events.

What’s it like for you? My friends.. the new ones.. That have come to me since she left me. Whats it like to not know such an important piece of me? What’s it like for you when I mention her?

What’s it like to question if you did say the wrong thing?

What’s it like to know I hurt so much and not be able to touch it?

What about you? Friends that knew her? Ones that have chosen to step out.. Whats it like when you see my posts?

What’s it like when I talk about her? When I insert her into conversations?

What’s it like to read my words.. and know you were standing in that kitchen with me?

whats it like sissy?

to be you.

right now.

…until there is a cure..



  1. EMailman says:

    I will always regret not getting to know you better before leaving Gilroy; I knew we were simpatico. I feel lucky I experienced Jennifer and I have a few memories I will never forget. I feel the honor and responsibility of holding those bits of knowledge of who she was. I will share one here. I was leaving your house and as you opened the door you paused because Jennifer was laughing and you said, “Doesn’t she have just the most amazing laugh?” and I smiled and agreed. Such a proud mama! So much love that girl was showered with!

  2. Sandy says:

    I’m in awe of your ability to out pour your heart in writing. Reading your words I can vividly feel the agony with you- and I’m overcome – JLK will for ever live in our hearts.
    I’m so happy to have known of her and see her gorgeous eyes in the many pictures you have shared. I will always pray for you.

  3. Malina B Finnerty says:

    Write a book – (if you haven’t already, if so write another).

    Your words inspire and give strength beyond your imagination. Across the ocean moms read your posts now and then and it gives so much.

    I don’t know what to say – I don’t think there is anything to say because I cannot imagine I cannot understand. But what I can do, is tell you that I appreciate my kids more, deeper because of your story. I do truly wish you never had to write these stories, as do you, no doubt.

  4. JFP says:

    As a friend who knew Jennifer, I am glad when you talk about her. She deserves to be remembered and you deserve to share stories and your love for her.?

  5. Kimberly R. says:

    I remember the determined and Happy-Go Lucky Libby. The one who could do it all. I remember baby Jennifer. Your journey to get her. Your happiness at finally being a mom. I just wish she were still here with you. I never know quite what to say. XO.

  6. Kristina says:

    I’ve never met someone (I actually haven’t even met you!) who can literally make my heart feel like it’s in my throat. A mom so I try to imagine, as cruel as that sounds. Because how can I make a difference if I don’t understand?! I know I don’t have to understand to CARE. To give a damn. But I always feel like I’m too little too late. Sure, care now that someone from your home town threw some glitter your way and you can’t wash it off. That’s Jennifer to me. Glitter that I can’t wash away even if I wanted to. She stuck right there in my heart and it’s all because YOU, Libby. Because of you and your words. Jennifer dying isn’t the reason I care. Jennifer LIVING and you sharing it with me (us) is why I care.

  7. Katie Scheid says:

    I didn’t know you then but, I remember seeing you on Jennifer’s first day of school and just being in awe. Such a beautiful family. Joy is what I saw that day. The amazing thing for me is to see you have joy now too. Showing your living children that is an awesome gift.

  8. Leah says:

    I find such power and strength in your blog. Your love is palpable, inspiring. And your capacity to capture the depth and complexity of emotion is striking. I feel it in my body, in my bones and heart.

    Sending love.

  9. Crystal says:

    So I don’t know you.. However I’ve followed your journey this entire time. Since December 2013. I’ve had 2 dreams about you. The first was that Jennifer and the family came over my house, that she never died. She still had the tumor but you and your husband were there with her and all of this had been wrong she was alive and living with the tumor. The second was last night. It was just you and her stopping by my house to say hi. She was still doing well. In both dreams there was a sadness knowing that the end would come, but you were happy to still be fighting. Weirdly I’ve followed a lot of kids with DIPG via social media. Jennifer is the only one I’ve ever had a dream about.

  10. Cheryl says:

    I’m sorry about your loss. Maybe this information will help someone.

  11. Crystal says:

    Miss your writing Libby. Hope all is well.

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