the 23rd -12th-

12th.

I am supposed to be working right now. I have a follow up presentation at Genetech to prepare for next week.

January 12th.

Kids are at school and at my moms so I can write it in a solid block of time and get myself prepared. Its a big deal presentation.

1 month until THE 12th. ..

..again..

But I can’t concentrate. Its gnawing away at me. The time that I know is looming and coming too quick..
but also too slow. Because it feels like forever since I held her last. And its only been 23 months.. How will I last the rest of my life??

..how the fuck will I last the rest of my life????

A year ago we were all packed up for our make a wish trip. Unsure what to expect but so excited for the adventure. Right before we left though.. the first signs of how hard she was struggling just to live.. to survive this monster that never ever stopped growing inside of her. I will never forget this post.. the chilling forward for the book we didn’t know we were already writing.

Daddy's little girl.. The bond these two had.. how he was so completely wrapped around her little finger.
Daddy’s little girl.. The bond these two had.. how he was so completely wrapped around her little finger.

she never got a break. never had peace.. until she left me. I couldn’t even give her real comfort.. and I didn’t even know it. I didn’t know. ..

I remember seeing how she struggled to hug the characters. Thats what DIPG does.. steals from these kids one piece at a time.. Use of one arm.. and leg.. ability to eat and talk.. But they are always aware its happening.
I remember seeing how she struggled to hug the characters. Thats what DIPG does.. steals from these kids one piece at a time.. Use of one arm.. and leg.. ability to eat and talk.. But they are always aware its happening.

yes i did

… I didn’t WANT to know. Didn’t want to admit.. that she was going downhill. There were so many signs. But I just couldn’t face it.

Jonathan wanted to meet the Tangled princess so we used Jennifers special blue button to go to the front of the line. She was tired .. ready to leave but she did it for him. Only looking back at the pictures can I see how truly exhausted she was
Jonathan wanted to meet the Tangled princess so we used Jennifers special pink button to go to the front of the line. She was tired .. ready to leave but she did it for him. Only looking back at the pictures can I see how truly exhausted she was

I still don’t want to.. but the calendar doesn’t care..

Jonathan has outlived her now. That was a hard morning to wake up to. I was filled with incredible gratitude that I still got to raise him.. to have him.. to touch and smell him. And such sorrow that I didn’t get that day with her.

2 years ago my Jennifer was struggling. So much. And it just got worse. But she fought. She wanted to live.

damnit she wanted to live

She didn’t lose her battle. We did. She had no weapons against this invisible beast. It was never a fair fight.

What was she thinking.. as she suddenly couldn't sit up on her own anymore..
What was she thinking.. as she suddenly couldn’t sit up on her own anymore..
..and her Daddy quietly wept.
..and her Daddy quietly wept.

I knows she is at peace now. Not hurting. Not scared.

But I am. I am hurting. I am scared. And I selfish because I don’t want to hurt anymore. I just want her back..

Today I just want to run. And hide. And make it all not real. I want to get back to a place where I can feel her.. I miss that sacred time after she died. How desperately I missed her.. but also I felt her. I just didn’t know it at the time. But she was so big and full in this house..

how will i last my lifetime. 

Im scared. I am really scared.

Her absence is heavy and violent. Like a animal .. growing hungrier and bigger.. devouring me.. One piece at a time..

oh sissy miss

i don’t want to last a lifetime

but i will

i promised you i would take care of them

and i will.

just right now baby girl

right now

i really don’t want to.DSC_0565

…until there is a cure..

 

 

10 Responses to “the 23rd -12th-”

  1. it is so very sad Jennifer isn’t here. Libby I can’t fathom how you make it each day. Thank you for letting us walk this walk with you. As hard as it is and as many times as I cry reading these words I hope you know the awareness you are spreading is incredible. Thank you for the talks you give and the time you take to share Jennifer and your family with others.

  2. libby, i read every post.. i don’t comment because i always feel like what i want to say isnt helpful to you… that last picture you posted of her in the snow white dress… she seems to be answering you… to me that look says.. “you will last a lifetime because your strong.. and you will always take care of them because you are our mom…”
    every time i read your blog.. i ache for you.. but libby you were meant to be a mom.. it’s in your dna… and even though Jennifer was only here for too few years… they were years filled with love.. that’s why you, Tony, and Jennifer found eachother… at the very least her 6 beautiful years were filled with parents that adored her… love you guys

  3. My heart breaks for you. This brought so many tears to my eyes. We will never stop fighting. Fighting for Jennifer. Spreading awareness. We will win. Jennifer will always always be remembered. She will never be forgotten. Always in my heart and on my mind. For them because of her. We love you Jennifer. ♡♡♡♡♡♡

  4. I truly do not know what to say. She is forever in my heart because of you, your writings, your pain, that makes me want to help harder to fight the monster.

  5. <3. Still here… still reading every word… always will… she still is daily in my thoughts… love and hugs being sent your way. I will continue to keep all of you in my prayers.

  6. Libby, my heart just continues to break for you! i think of Jennifer everyday! Thank you for still sharing. I will never stop fighting, spreading awareness! Still praying for your entire family!

  7. I think of you often and so feel your pain as our own date looms ahead–for us, THE 3rd of February–will mark one year since we lost our sweet Kyanna. She had those same Mickey Mouse ears that are in the picture of your sweet girl.
    Know that you WERE able to bring her peace while she was still here. Just your presence, your love, your touch. I am sure of it. Our girls are playing together now, waiting and watching us; giving us strength to somehow take one day at a time.
    Hugs to you across all these miles.

  8. Words can never express the depth of feelings your words bring up. I have been sitting here for long moments thinking, crying, wishing it could all be different.

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