a new year

Happy new year. . this year 2015..

.. just one more thing Jennifer will never get to experience.

Last New Years Eve. Silly string battle. She didn't have the strength to pouch it with her hand... she never complained .. only improvised.
Last New Years Eve. Silly string battle. She didn’t have the strength to push it with her hand… she never complained .. only improvised.

And I am hurting over it. So much. So much more than I expected to. We are all sick. It feels like we have been the whole fall/winter season and I can’t help but wonder if heartbreak can do that to a person.

Daddy and Jennifer watching some horrible dancers and easting smores.. One of her favorite treats.  Daddy and Jennifer watching some horrible dancers and easting smores.. One of her favorite treats.
Daddy and Jennifer watching some horrible dancers and eating smores.. One of her favorite treats. 

To watch your child struggling with cancer. Its a helpless feeling. To hold her as she gets sedated… and watch as they bolt a mask over her face to the table she is sleeping on. To watch her struggle with horrific headaches and unstoppable throwing up. .. Its so hard. But I was right when I said it will get so much harder.. This is still one of my telling and long lasting things I have written .. how right I was .. for then and for now.

This picture is one of the final days on her Make a Wish trip. It was supposed to be such a fun reminder.. instead this outfit reminds me of being so scared. This was the day her vomiting started to take over.. be out of any of our control.
This picture is one of the final days on her Make a Wish trip. It was supposed to be such a fun memory.. instead this outfit reminds me of being so scared. This was the day her vomiting started to take over.. be out of any of our control.

This. Right now. Its so much harder. This pain I feel. Missing her. To my depths.

Looking around my kitchen and knowing I have expired food in the pantry that I can’t bear to throw away because it was hers.. The 4 stools we bought .. and designed the kitchen around for the 4 kids that were supposed to be filling them. There is so much to go through .. to touch and try to organize. And much that really does need to be thrown away.

She loved to eat.. final meal in DisneyWorld was whipped cream and bacon. So thankful we let her have those days.. her final days of eating to just enjoy it.
She loved to eat.. final meal in DisneyWorld was whipped cream and bacon. So thankful we let her have those days.. her final days of eating to just enjoy it.

But I can’t. I am frozen. Thats probably not fair to the rest of my loves that share this home with me and her memory. I hope they can all look back one day and know how hard I tried. Know that I failed more often than I succeeded… but that I tried. So hard.

Her time capsule of a room. The sound machine still playing.. so there is always life and sound in here. Her princess back pack still filled from all the things she wanted on the plane ride back from DisneyWorld. And her bed. The one we got just for her to die on. Big enough for both of us to lay together with any equipment she might need.

13301780804_3854dbdb8d_o

Those memories.. of her final days are starting to flood me. Overwhelm me every moment they can. If I steal away a minute for myself for a shower.. or even just folding laundry while my youngest 3 play.. they find me.. and swallow me. Whole.

were you hurting?

were you scared?

im so sorry baby

i am so sorry

Jonathan too. He is waking up every night now crying. Sometimes he can explain it.. and sometimes he can’t. We figured out what started it for him .. Baggo night at the same place we had her services. Something got off kilter for him then. And we haven’t been able to bring him back on track.  Its so helpless.

I do my best. To give them all of me. To let them see my struggle too.. with missing her. But also the fun and the joy they so completely deserves. Jonathan wants to also. He wants to have fun and find ways to incorporate her. A perfect example was yesterday he wanted to build a fort. He got out all the blankets. And they all had to be hers. I added in one that was just laying on the couch and he wanted it off. He wanted her to be in the blankets. So I embraced it.. walking that fine line of not encouraging it… but accepting it. Because I know.. he is 5. It won’t always be like this for him and I never want him to feel like he is letting me down..

We had a picnic of all the foods she liked. And we shared a few silly jokes. I yearned for her. To have her in that fort with us again. All of her.. not just the symbol of her covering us overhead.. but inside sharing in the moment.

ny5 ny6

The thing that struck me most as we transitioned from 2014 to 2015 wasn’t the changing of the year like I expected.. (though that has been tough)it was the realization that with 2015 came a new month. January. Last full month before the one year anniversary.

A sleeping baby Jennifer
A sleeping baby Jennifer

no. no. no.

Charlotte slept in my arms that night. She and Jennifer are the only 2 that I sleep well with. And I cried myself to sleep going into that first day of January. Because this is the beginning of the end.. The final month of firsts.. until I am stuck only with the rest of my life. .

..without her.

no.no.no

My favorite picture from last New Years Eve.
My favorite picture from last New Years Eve.

I am trying to figure out what is best for all of us. Again I know I don’t want to be here. Though I love our home… I know its not where I want to be when the anniversary hits. But I don’t know if I want to be with just Tony or us and the kids I am forever grateful for. I am looking up and coming up with ideas for each possibility. .. But frankly I am paralyzed with fear. Of wanting to do what is right for all of us. Sometimes things come to me.. and I just know.  I feel so lost in this thick fog.. unable to see.. I don’t trust myself to  do anything right.

I know I seem powerful and steadfast in my opinions. Sometimes I am. Surprisingly often in this journey both before and after I have been able to trust my instinct. But right now I am shaken and full of doubt.

  I am so full of self doubt right now I can’t even see my feet.. let alone the direction they should be moving…

..Because the most important part of my Mommy title was to keep them safe. I have failed.

failed.

And right now I am struggling so desperately to not continue failing them all. So now I crawl. I fall to my hands and knees and I crawl. Finding my way.. our way .. simply through touch.

help me buggers

i need you right now

mommys aren’t supposed to need their daughters like this

but i need you

your strength and your sight

help me jennifer

and please

forgive me

ny11

…until there is a cure..

16 Responses to “a new year”

  1. Libby,

    Your pain rips into my heart & soul. I often cry just wanting Jennifer back…especially after reading each of your posts! I don’t understand why she had to go and why it had to be permanent, it just doesn’t seem right. I do know that you didn’t fail her or your other children. You can’t fail at something out of your control. you did the best for Jennifer & her siblings. You’re a wonderful mommy! My children are better off because of her & you!
    All my love! ~Melanie

  2. that’s amazing it has nearly been a year. it’s such a hard year for you. please be kind to yourself. you fought for her and continue to fight against this insane disease. so unfair and painful. sending hugs and wishes for you and your family to feel her touch in some way.

  3. I miss her everyday. There is not a day goes by that i don’t think about Jennifer and about all of you. It’s hard to believe it’s almost been a year already. I’m sorry Libby. I wish so much she was here with you. ♡

  4. I obviously have nothing that I can say that will help take away the pain. Just know that there are people all over America (and the entire world I’m sure) praying for you and your family. I have thought of Jennifer every single day since I first found your blog early last January. I speak her name often. My own daughter (age 4) talks about her. She knows the reason her mommy wears a love4jlk bracelet everyday. My own heart is broken from losing my mother (and my very best friend) a little over a year ago. I understand the pain of losing someone so close to you that you do not physically believe that you could ever survive. The days when even though you see the sky is blue, it is truly black. The thought that really helps me to go on with my life is this: our earthly lives are but a blink of an eye in Heaven’s time. Years…a whole lifetime here living in pain on the earth…it is but only a teeny tiny moment when compared to our eternal lives in God’s house. You WILL see her again, and to you it will seem like a long time, but it truly is not. One day, one beautiful day…you won’t even remember the pain of the past life you lived on earth. Remember, every day you live is a day closer to Jennifer. Try to hold on to that truth, God’s truth. Love to your family always.

  5. Libby,
    There are no words to comfort you! Nothing right to say. I think you are nothing short of amazing, brave and one of the absolute best mothers there has ever been. Your sharing your most private thoughts is creating a revolution! It is motivating. Of course my heart breaks with every post, but today’s might have moved me the most. You never let us forget to fight or to be grateful or to not take for granted our tomorrow’s. I thank you for that. It is like a shock back into reality, when I sometimes let my mind obsess over dumb trivial things. Just know so many of us are still here, still reading, still fighting, still remembering your beautiful Jennifer. You have changed me in so many ways. I wish I could take some of your pain. I pray for you and your entire family for peace and strength, until you are all together again.
    Please trust yourself, you have the best mommy instincts and take extra good care of yourself. Grief absolutely can make you sick. I know those beautiful children and Tony need you, just like you need them. I only wish I could help more. Wishing you all the best!

  6. She loved you. She loves you still. You will ALWAYS be her mama. I believe that in heaven God lets us know truth, fully, gracefully. She knows with her whole self that you love, love, love her with every ounce of yours. She knows God’s plan because he pulled her in his lap to whisper it to her. She knows when she will see you again. And love will fill all the time in between. Peace to you, living loving mother of four. We all love you, too.

  7. Lots of prayers for your entire family. Again, I have to take a deep breath after such a heartfelt yet heartbreaking post. LOVE4JLK always

  8. I am sure some would say its impossible, but I swear Jennifer and Tony have the same profile in that s’mores photo!

    It must be incredibly difficult to not trust your ‘mommy instinct’ when really that’s all we have to guide us. There is no book on parenting, or loss, or grief. You just have to sort of make do with what you’ve got; and that seems so incredibly difficult to do. I don’t blame you if you have days where you just want to throw your arms in the air and sort of question God. Why are you doing this to me? Why aren’t you stopping all this hurt and pain? I cannot imagine the pain and grief you deal with, Lib. I know you don’t feel strong right now and that there is honestly nothing we can do for you. But know we are all here, sending you as much strength as we can. I know that’s not enough. It will never be enough. I am so sorry.

    1. The looked so much alike. She was actually the spitting image of one of my nieces. Like eerily so. ..

  9. There is so much pain described here (and received here) I have nothing to say.
    Thank you for telling us your journey and thank you for sharing your daughter with us.

  10. This doesnt matter in your pain but you ate an incredible writer. I cry every time i read your blog. You really really need to consider wtiting a book. I know it would be a top seller and get the word out about DIPG. Much like Comfort, Journey Through Grief. It could be fiction, memior to Jennifer, anything. Your incredible talent shouldnt go to waste.

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