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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January 15, 2017

I am out of control.

Watching Jennifer struggle. Witnessing her slow and painful death.. I learned I have no control…

And now.. I constantly feel like I am being battered by wave after wave of emotions.

I wish I could control my mind better… I wish I could control the triggers.. know when they are coming.

..But mostly I wish I could contain them better like I used to..

It seems like its getting worse now in that aspect. That when I used to carve out time daily to write I could control the anguish better and keep it locked up until I was ready to take it out and examine it behind this keyboard..

But it seems along with the growth I have talked about recently is this new thing. .. my loss of control over the triggers.. And the way I am reacting to them.

I have found lately that losing Jennifer seems to permeate its way into happy moments.. it seems to seep in and tarnish wonderfully delicious moments with my living children ..


its not fair.. and lately its been happening more and more.. so my frustration.. and frankly my fear over possible emotional landmines makes me want to lock inward more and more. .Trying to protect all of us from the outside world.

I find as my desperate sadness seems to not be as constant,  the sharpness of anger.. my jealousy.. my fear seems to be turned up in strength and volume.. 

Time is passing and as my living children grow it seems to be going faster and faster..

mercifully.. and cruelly so, depending on the angle I am looking at the passage from.

I am anger.

I took Charlotte on a walk/bike ride and I watched her ride ahead of me.. I thought of how next year she would be in preschool a few days a week and the year after that she would be in kindergarten. I thought how quickly this time is passing .. watching her grow smaller as she rode out ahead of me I thought this is exactly how it was supposed to be. That we watch our children grow out and beyond us.. And I was sad at how soon it will be that she isn’t a constant in my every day..

and then my stomach lurched forward.. I felt my whole body tense up.. And I wanted to scream. I remembered having such similar thoughts with Jennifer.. but going in a completely different direction.

The realization that Jennifer would never grow any more.. that I will never get to watch her ride away to the rest of her life.. and that gnawing fear that what if I don’t get to with Charlotte either. ..

It erased a beautiful moment with my daughter. .

I am jealousy.

The other day scrolling through FB I saw a birthday announcement for a just turned 6 year old little girl. One whose family used to be part of our daily until Jennifer got sick. . Too much for them to handle. I couldn’t believe it was possible this younger sister was actually 6. And I was mad. Jealous really.

Why my daughter? Why were we told she would die on her 6th birthday? And other people just get to celebrate… And move on with their lives. .. When we are forever changed.

I am fearful.

Jonathan learned how to make snowflakes at school and its become his latest and greatest trick.. I find them constantly stashed all over the house. . So they typically end up in the trash. This one was headed to the same fate.. but as I went to throw it away something from my depths screamed out.. “wait. stop. think.  you would want this” ..”imagine how you would react finding it”..

So I stopped. I held it me and rocked the crumpled paper and pleaded silently for this not to be a premonition.. I am now so many things I never ever imagined I would be. ..

I am a mother to 5, I am fearful, jealous, angry. I am a bereaved parent and a working mom. I am broken and forever incomplete. I am grieving and I am surviving. .  I am..


i am

your mother

for the 6 years 3 months and 15 days i got to touch you


for the 9 years 2 months and 19 days

i have loved you.

…until there is a cure..


  1. Aimee says:

    You are forgiveness. I hope to read this blog soon. Forgiveness allows us to have joy. I have not lost a child. But I have lost loved ones close to me. I have stood by and watched them suffer. But our loved ones want us to forgive ourselves and have joy.

  2. Meg says:

    Sending you love Libby. I can do nothing for your pain. I can’t even comprehend it. I wish I could wipe it away as I could tears. I wish so much, but it doesn’t help you. It doesn’t bring Jennifer back. But I am so sorry. And I am here, if you need me. I am here, with love.

  3. Terry Tafoya says:

    You have managed to put into words the very pain my mother must’ve felt when she witnessed my sister battling for her life with pediatric brain cancer. My mother has passed on as well and your words have helped me reconnect with her. I stand with you.❤

  4. Melissa says:

    I have no adequate words to describe the pain my heart feels for yours…how I wish so badly that Jennifer could come back. I am angry for your sorrow…angry that your life has been turned upside down in every way. I don’t “know” you, but your words resonate with me and my own battles with grief. Forever sending you my love, and a promise to not only be “sorry” but also very active. The number one thing I long to see in my lifetime is a cure for DIPG, and all pediatric cancer. Too many broken hearts have been caused…I am so very sorry that monster stole your darling JLK.

  5. Zuzana says:

    Dear Libby, It’s not a premonition just a an artwork you will be happy to find when Jonathan is 30 and you remember him as a child. There are 2 types of people, the ones who process things fast and the ones who analyze, remember tiny details, hang on to the past negative experiences and think over and over again about the why and how could I have done differently. They relive the pain they felt back then over and over again and it takes years to move on. I am the latter. And it is so difficult to live with this. Maybe you’re similar…and a pain from child death is a million times heavier than anything else. How could 3 years ever erase or ease it? Noone can blame you for how you feel and pls don’t blame yourself. But maybe a professional could guide you through it. Sending love and remembering Jennifer.

  6. Leah says:

    Sending love.

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