so i lied

I try to be honest. Especially in this new life we have been handed.. But I am finding I have to lie sometimes. To the outside world and my kids. With a smile that covers up the falling apart happening inside at that exact moment..

The surprising hard moments are often times the worst ones. The ones I am not ready for or expecting..

When the school year started. I used to walk Jonathan in every day. We would wait during assembly and watch him walk to the classroom. .. But the weather got colder and he wanted to be dropped off so we transitioned to that.

Yesterday Nicholas asked if we could go in again. And Jonathan liked the idea so we did.

I hope they don’t ask again.

Two lines behind him I saw these kids.. The ones that are all strangers to me… but I know their faces. The ones that were classmates of my Jennifer. They have all changed and grown up so much. I found myself desperately staring at them and I felt that familiar sting return to my eyes.

I was grateful for sunglasses in that moment. Because I felt so tiny and fragile.. vulnerable.

These kids.. that I know nothing about now.. That are only vaguely familiar strangers.. Exactly the same as my own daughter is now.

2 years. 2 years since I touched her.. heard her voice.. got to tell her I loved her. Jennifer is now foreign to me. Somebody who I know her face.. but so changed.. And I have no idea how.

My should be 8 year old. My should be 2nd grader.

forever 6.

I have no idea what these 8 year old girls were talking about.. or what they like.. I don’t know what their days look like.. These vaguely familiar children.. That I should know.

but don’t.

My Jennifer. I have no idea. None. What its like for her where she is. She has become foreign to me, for some reason that thought has been haunting me the last two days more than it has before.

Yesterday playing with the kids in the dance room. .. I stared at her picture over their shoulders and I just stared. At all of her little features.. the tiny mole she had on her cheek.. The things I took for granted getting to see every day.. I just stared at her.. Trying to pull her out.. or me in.. Just back to a moment with her again.

The kids will switch what picture goes in front.. The one of all the first 4 or one one of just her..
The kids will switch what picture goes in front.. The one of all the first 4 or one one of just her..

I can’t.

Then today. I watched these children march past me and wanted to scream. I wanted to beg them to remember her. To breathe her into life still. She mattered. Damnit my baby mattered.

But only one or two of them know who I am anymore. In the classroom every week for such a short time in their school careers.. But I know them.. vaguely. .. distantly.

The one field trip we got to go on .. She was so well liked..
The one field trip we got to go on .. She was so well liked..

..just like you. you are so like them for me now jennifer. i hate that. so much.

I can’t decide if I am excited for them to graduate and not have to see them.. Or if I will find comfort in being able to be a silent observer in 6 years.

Something struck for Nicholas too.. Again he said he wants to go to their school. But not kinder. He won’t be a “koala like Sissy or a kangaroo like Jonathan” I will just go to another one.

We got in the car and he asked questions again. About her body. About what she looks like now. And why we don’t have our bodies. Today I had better answers I think. That maybe we do have legs and arms.. Just not these ones. Better ones. And we imagined how Jennifer’s heaven legs might look.

And he told me how scared he is to die. I’m not. Not even a little. Holding her as she moved to heaven was the most warmth and fullness I have ever felt in my life. I just told him that. That the room was full of loving souls that I couldn’t see.. but I could feel.

I told him it was only me. And he whispered that he wished he had been there .. why didn’t he get to be there. ..

The truth is.. because there is no guidebook. No way to know what the right thing to do is.. For the child dying and for the ones that will be left behind.

Jennifer often would ask for me to take a picture of her with Charlotte. .
Jennifer often would ask for me to take a picture of her with Charlotte. .
..and now Charlotte does the same.
..and now Charlotte does the same.

And he asked if she was in pain.

so I lied. That I was confident she wasn’t. But I don’t know. I don’t know. I don’t know.

She cried that last day. I will never know if it was pain or fear. .. I know what I thought then.. but I will never know ..

This. This one question will haunt me the rest of my days. 

“I kept them alive” .. So often you see that posted by parents jokingly that their kids may be messy.. or had a bad dinner.. but they kept them alive. I used to do that.. but for a parent with a dying child.. our only job is to keep them out of pain.

.. and I don’t know if I did that. If I failed on all levels of my job. To keep her alive and in the end out of pain.

i hope so

i wanted to

i am so sorry

oh my jennifer

i am so sorry.

DSC_0356..until there is a cure..

 

11 Responses to “so i lied”

  1. Your picture of Charlotte sitting there and your words saying she says the same thing makes my eyes fill with tears. I often read your posts and think I wish there was something I could say or give her that would help heal her heart just a little bit because it’s so unfair. But I wouldn’t know what to send that could heal a broken heart or what to say. Just know that so many people are inspired to do good because of the honestly in your posts and I know many people….no matter how many years pass…will always remember Jennifer and her story…and yours xoxooxoxoxo

  2. My heart breaks with this post… all of them really… but this one… tears. I cannot imagine. I think of Jennifer so often… I looked at my 5 young kids today and soaked them up knowing that nothing is certain. I appreciate them more now than I did before I knew your story… when I thought I appreciated them as much as I could. You’ve created a lot of love out there. Jennifer is remembered by so many and has brought so much good to the world. Thinking of your family.

  3. Such a heartbreaking picture of Charlotte sitting at her sisters headstone:((. This just makes me want to work harder to spread awareness- and I will continue to do so.
    So much love and prayers sent your way Libby.
    I am looking forward to MNO to hear you speak- LOVE4JLK always💗💗

  4. I think her tears were relief, in my honest opinion. I wasn’t there, so I cannot say for sure and I apologize so much if I am overstepping by saying this, but Libby, I truly believe you made her as comfortable as you could and her tears were her transition into her heavenly body. Her tears were the result of her feeling nothing but pure euphoria. Still here reading, sending you love and support as well as trying to continue to spread the glitter.

  5. I truly had to just stop reading this post for a few minutes, I couldn’t see through the tears. That picture of Charlotte wanting a picture of herself with her big sissy’s grave stone, that just tore me apart. Weeping for a family I’ve never met…but somehow feel so connected to. Your baby mattered. She still does. She always will.

  6. My heart aches for you. Sadly, I also resonate with many of these words, particularly the words at the end…of the end. When my husband and I received the news of our baby’s two life-limiting conditions hours after a traumatic birth, we talked to each other (through some semblance of cognition) about how we didn’t want our daughter to be in pain. We barely talked about the details of the multiple surgeries that would be required of her, but the other reality was unspoken. What it would be like for our firstborn daughter to “live” on maximum life support in between each procedure, with her entire small torso ripped open in various places. I didn’t wish for pain for my baby girl in those scenarios. But I also similarly struggle with doing my job of keeping her away from the pain she might have already have been in during her only seven days on this earth. Oh sweet, Jennifer. Sweet, Leona. I hear your heart, Libby. Our daughters mattered! Leona and Jennifer always will.

    1. I am so sorry you know this pain. But thank you so much for sharing your daughter with me. Leona is a beautiful name.

  7. my belief is she cried because she knew how much you all would miss her and the pain YOU would have. I believe she and others gone much too soon dance and sing us beautiful songs and praise Him every day.

    my friend’s son died yesterday and my heart hurts for them just like it aches for you. I will do my best to let her know I am thinking of them often and just be there for her.

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