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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 It is warmth. It is joy. It is full.

September 13, 2017

I’ve always known .. well I guess not always since I never in my wildest fears imagined this being our life.. But since she was put on hospice care I knew our kids would each take their own paths on their grief journeys. I remember them teaching us how our kids would each re-live the loss of their sister as they hit new cognitive and emotional milestones..

So I’ve know it.. It should be no surprise ..

but it always is.

I share all of this now for them.. An addendum to my letter to them.. (shared here) for them to know what I know.

We were recently talking about the girl I believe to our Jennifer’s best friend. How it was 11 years since her family said their final goodbye to her. We talked about what we could do to support Brecken’s family.

It brought to the surface each of my living childrens current stage of understanding and ache..

As the 4 sat eating breakfast across me from at the bar.. I learned so much about each of them. ..

The emotion Charlotte feels is true and strong. But she lacks the ability to understand it. My girl that cries at characters sadness in movies.. She simply cried real and genuine tears.. She told me how she is scared to die. Scared to leave me. No matter how much I tell her I should die first.. it doesn’t seem to sink in. All she knows is how very much she will miss me. And that she misses Jennifer. She wishes her big sister was here..

Bridgette… Just watching us all. Eating and watching. Absorbing everything going on around her.. But still protected from the emotion by her innocence.. I wonder for her though.. what will it be like. This sister we all miss.. that she knows only through pictures. 

 

Nicholas.. asking question after question.. The unrelenting power of his what if questions.. What if we wont see her again? What if she is just gone? And in the end.. his fear of death. Of being alone.

Jonathan .. silent the whole time. His knees tucked in.. hugging them tightly.. And listening .. to every question and answer. Watching me with such intensity as I hugged his younger siblings. Tears simply overflowing and falling down his cheeks. Silent. Not saying a word.

I was most worried about him in that moment. But as it often seems in parenthood I was wrong..

It was Nicholas.

I guess I should have known.. He is now the kid always wearing sissy shirts.. making sure she is included in pictures.

Soon after this conversation he would start kindergarten.. and he was finally excited for it. He was so scared for so long. Hating her school.. blaming it for killing his sister.. Swearing to me he would just skip kindergarten.. watching Jonathan like a hawk during his year in kinder ..every morning walking to class.

I turned into the skid.. Instead of denying what I think he already knew I embraced my own desire for him to stay home with me forever.. I told him he didn’t need to read or learn.. I told him he could just not go to school.. Stay with mommy forever.. And as is true Nicholas he revolted against the idea. He wants to learn.. wants to read.. And he became excited about school.. Her school.. her uniform..

but it was simmering.. until it boiled over inside of him.

He called for Tony. They never do that. He called for his Daddy to come talk to him privately at night. He was scared to sleep. Scared of the nightmares about dying.. and the monsters that were coming to him. His Daddy did what he is so good at. He gave his son the power and confidence to be bigger and stronger than those nightmares.

Their love for each other.. was pure goodness.

The next night.. it was me he needed. (YEA!) As I tucked him in he stopped me when I turned off the light.

I’m scared mom. . Scared of dying. . not just as a child, not like I have heard from many of them before.. But also scared for the promise of death even in old age..

I learned so much about my son over the next 45 minutes. he finally learned what crying was..Replacing the past confusion of the “water coming from his eyes” was a anger at crying.. A need to not have it happen without his ok.

His fear. .. It was so much. So deep. What if it’s just dark? What if it I have no voice box and you can’t hear me? What if I am stuck? What if there is no heaven? In the end what if there is no God?

what if.. what if mom..

ok.. ok mom..

but mom.. what if..

He seems to find the most signs from sissy.. And always requests his picture to be taken with the signs.. (a heart shape in his food)

I laid with him. I touched him when he let me.. I listened and I spoke the utmost truth as I know it. Truth I never ever would have imagined sharing with my 5 year old child. Truth his older brother has never needed. ..

I don’t know. There is so much I don’t know. So much we don’t know. .. A lot I believe.. a lot I have faith in.. But I can’t tell him much with absolute certainty.

Except this.

I will share here what I shared with him.. Mostly for them. For my four living babies… To forever know what I know with absolute certainty.

There is something after this.

Son I know. I know this more than anything I have ever known.

There is something after this. It is warmth. It is joy. It is full.

That’s it. That’s all I know with absolute certainty.

I shared some of my secrets.. secrets that now only he and I know of her final moments..

Yet still.. what if mom??.. what if???

I held his hand. I held it tightly and I stroked it gently. I asked him what that hand would look like when he was an adult. He couldn’t be absolutely sure.. but he could guess..

I asked him what it was called.. I asked him what if it was called his foot.. But its not. He just knew it wasn’t.

I never let go of his hand and he let me hold it this whole time.

I told him that’s just what its like for me. Because I know.. just like he knows its his hand..

It is warmth. It is joy. It is full.

So many other things.. everything in fact are things that  I think ..that I believe. But those 3 things I know, to my absolute depths.. I know.

It is warmth. It is joy. It is full.

And when he is scared he can look at his hand and remember what his mommy knows.

I have learned so much recently about them. About the new levels of grief and understanding they are achieving.. And I have learned they are listening and hearing us..

In their own words echoing back ours when I need them..

The first day of school this year was hard for me.. we went to sissys places.. and Charlotte was witness to my tears.

Not afraid of them she boldly steps up to them. Hearing that I miss sissy she happily responds she is always here.. Always with us somehow. I try to explain how I just wish I could reach and grab her.. touch her and hold her.. And she reaches her arms up to the sky.. Like this mommy you do it just like this..

Jonathan reassuring Nicholas that death isn’t scary..That night of our talk when he comes back to their room for his bedtime. He asks what we have been talking about. Nicholas allows me to tell his big brother.. So I do. That Nicholas is scared of dying .. And big brother tells little brother confidently not to be. That mom and dad and maybe even he will be there waiting for him.

Its well past bedtime now.. So I promise we three can re-visit tomorrow if needed.. And they each get a final tuck in and kiss.

As we went to bed Tony and I saw something new. For the first time in their short history my boys successfully shared a bed. .. I only found out later how.. Jonathan crawled into bed after Nicholas fell asleep.. just in case he had a nightmare.. so he would know he wasn’t alone.

i knew i couldn’t raise them without you

i know i’m not

i know.

i know you are still here.

somehow .. someway..

with all of us.

..until there is a cure..

 

  1. dd says:

    thank you for this, Libby.

  2. Lois Tefft says:

    This is so beautiful. Thank you.

  3. Emily Civiletta says:

    Thank you Libby for sharing over the years. This is such a powerful message for me. Thank you from the bottom of my heart. It is warmth. It is joy. It is full. I must never forget your lesson tonight.

  4. Heather E Atzbi says:

    This meant so much to me today…to read this. I can’t explain it, but just know that it has. Thank you. ♡

  5. Shelly says:

    Tears flowing freely, through your family’s horrific pain is so much love, learning, understanding, love.

  6. Charlie Gaulke says:

    Such a beautiful moment to share. Thank you.

  7. Crystal says:

    Poor kids. There is something after death. Tell Nicholas everyone knows. Deep within everyone knows this is only the start of our story. Tell him a mother from Massachusetts agrees with you. I was thinking, or more wondering are the boys afraid we’ve forgotten Jennifer? We could send cards at Christmas time. One for each member of your family. Jennifer included. Just to remind them that millions of people KNOW there is something after death. We know Jennifer is still there.

  8. Toni says:

    This is amazing. Thank you for sharing. Always remembering your Jennifer.

  9. Abby M says:

    Beautiful post as always. I’m sorry if this isn’t appropriate to say, I debated whether or not I should share this with you but I’m honestly just trying to make sure one less child has to deal with the same feelings I did. Basically when I was six years old I lost someone close to me and developed a crippling fear of death. It started with me crying every night because I was terrified I wouldn’t wake up in the morning and turned into an anxiety disorder that still affects me today. I really wish my parents would’ve gotten me professional help when I first started showing signs of it.

    • Unravel Pediatric Cancer says:

      You reached out with obvious kindness and genuine want to help! So thank you. And we do have professional help for our kids!!!

  10. Silvia Cummings says:

    ❤️❤️❤️

  11. Jessica says:

    That was so beautiful.

  12. Janeel says:

    Wow Such amazing, emphatic children. All 5 of them!! ‘Reach up just like this mommy!’ You’re doing a great job. I can’t even…… Love4JLK!

  13. Wendy says:

    Thank you for everything you share. Tell Nicholas that you knowing is like the wind… you can’t see it, but you know it is there…
    ❤️ For JLK

  14. […] how she feels.. I know. Of course I know. .. I shared before the depths that I know, she is ok.. ..(Read this. Know what I know with […]

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