help

World cancer day was yesterday.

The old me. . .

I would have posted about it. Said how horrible cancer is. Read a few blogs or stories. I would promise to do “something”….tomorrow or after the kids get up from naps.

Feeling a bit cleaner and like I did my part.

. . . and that would have been a lie.

This is not to put down anybody else. I know for many other people yesterday was a spark to action. But I can tell you for me. The 4 month ago me. . . it wouldn’t have been.

The new me. . .

I live it and will continue to live it. . . as is so well expressed by a father and husband of a new found friend. . . here. The new me is making preparations for when my daughter dies. . . to get her tumor donated to the hospital and drs at Stanford that want to find a cure.

I actually *think* I am not a fan of days like yesterday because I think they provide a bit of a ” get out of cancer advocate jail free” card. Everybody has been impacted by cancer on some level, it is a monster of epic proportions. .

So today. . . day after cancer day. Lets call it do something about it day. Write to your legislature. . . do it in pink for breast or purple for survivor or grey for brain or gold for kids. . to keep a color theme alive.  But lets really galvanize the efforts…..

Part of “The Thread” as I see it is this. Lets get all these grassroots efforts together. Enough threads can create amazing things.

And please know. I know how many wore pink for my daughter yesterday. It meant so much. Actually it MEANS so much….but just don’t stop with the sunrise.

*******

Jennifer got mad at me again last night. Pushing me away the same way she has been Jonathan. Its absolutely devastating. We have had to up her methadone and do adavan more often. She does not like the way they make her feel. She blames me.

Being a mother is the greatest gift.

You are their first friend, their first teacher. . . you are supposed to be their protector.

. .  and you are always their punching bag.

She is mad. It comes out on me.

I get it. But its devastating.

When did she lose her smile? I can’t really be sure the last one.

I dont want her to go. . . but what kind of life is a 6 yr old living void of her smile?

I have always lamented the not knowing of my childrens impending lasts. Not knowing when the last time they will want a tuck in, or fall asleep in my arms……

I am losing so much of her piece by piece.

……day by day.

Today she sleeps next to me. A drug induced fretful sleep. And she wakes to vomit up water or bile. She tried to speak but can’t find the vocal strength. And then sleeps again.

I think its just the drugs right now…..and so selfishly I hope it is

My sister gave me a cuff bracelet yesterday. It says “God doesn’t give me anything I cant handle, I just wish He didn’t trust IMG_3773me so much.” quite true. The inside says “fuck cancer”

So very true.

She noticed it and I read it to her swapping fuck for “cancer sucks”. She tried it on and settled on pinkie wearing it.

For her even more true.

I wish I knew what it felt like to be her. So I could do better and be better . . I always wish it was me . … But sometimes I even wish to die like she is. To truly understand what it is like for my daughter.

IMG_3775                              My boys just came for a visit. And to play in snow in Gilroy. They came in. Jonathan taking the lead showing Nicholas how to be calm and quiet. Nicholas left quickly and Jonathan sat by her bed…then on her bed to give her just one hug mommy.

I took Jonathan aside for another talk. About all of this. Talking with him more about how her body is not working well anymore and that’s why she is so sleepy.

 

 

We shared some gluten free watermelon candy and talked about heaven and God.IMG_3777

If you feel pulled by this blog and my words. If you feel helpless…

help.

Not my child. . .for my baby its too late.

But the one being told today that they have cancer.

Our power to stand up to cancer is in our power. To control how OUR money in the government is spent.

So I ask you now to write….and keep writing… share my video or my words if that helps. . you can even tweet through this site.

http://www.opencongress.org/people/zipcodelookup

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30 Responses to “help”

  1. I am going to write to congress for you and your family and for all others out there. If it’s possible do you know where or who to direct it to? I don’t know you but you are an amazing woman. I’m hurting for you and your family and am praying all the time for you all. Please let me know what else can be done to help.

  2. Yes. To everything you’ve said. Yes to standing up and continuing to help. Cancer makes me angry and “our world’s” response to wear ribbons and think that’s enough makes me angry.

    There are ways for people to make differences today– whether it’s sharing Jennifer’s story or their own story… whether it’s giving what they can to research… whether it’s signing up to a bone marrow donor (that’s my work life)… DO SOMETHING. There are ways to help but so many sit back and wear stupid ribbons. Those same ribbons aren’t stupid if action follows…

    I am angry for you. No mom or dad or brother should have to live the story you are living today.

    I pray others jump up and down with anger too… and then act.

    1. Each person deals with death differently. I have lost both parents and two of three children to cancer and heart. Ribbons make some people feel closer to the ones they’ve lost. I agree we need to all do something to help find a cure but for many, Ribbons help. So no ribbon or anything that helps wight he grief is stupid if you look at things this way.

      1. I am sorry that I didn’t explain myself clearly enough. I will wear a ribbon for her every day for the rest of my life…

  3. I promise, with tears running down my face, to write. “Write” is part of my screen name, and if that is what you ask of me, I will wtite, and keep writing. Sometimes, my sweet granddaughter Aubrey will write with me, because she is carrying a load of grief and anger right now about what is happening to her friend, JLK. It seems so inadequate, but Libby and Tony, Aubrey and I will write.

  4. I have written my senators and congresswoman with your video link and definitely encourage others to do the same. They are lawmakers and budget makers and are supposed to represent the interests of the people. Let’s force them to do their job! I stand with you in this fight. Cancer has taken too many people I love. And for others out there picking a color, purple also works for pancreatic cancer and turquoise is the color for ovarian cancer. Thank you for this call to action. You are a leader and an example and I so admire you for that.

  5. I’ll fight with you. If not for you, then with you. I’ve written, but I’ll write again. I will challenge everyone I know to fight with you.

    Hugs, love, prayers .. Always.

  6. I will be writing Libby. God bless all of you right now. As a mom, my heart is breaking along with you. And jonathan… Bless him right now- he just wants to love on his sister. I read the blog everyday praying for some sort of miracle. I wish she wasn’t in pain, I wish she could eat- I wish she wasn’t pushing you away but it’s not her in those moments- I have to reassure you of that. SO much love to all of you right now…

  7. We are your soldiers on this fight and I am taking action! I have written to my officials and shared your video. I am here to continue to fight! Praying!

  8. Libby, I’ve “known” about you and JLK for a long time without actually knowing you. We share a wonderful, mutual friend, Sarah.

    I think about y’all everyday.

    It reminds me of what my family went through. My dad lost his battle to brain cancer 10 years ago now. Not a day goes by that I can’t believe it’s been 10 years. I’ve watched “the end”. Granted, it was my parent and not my child which I know is completely different. Either way, it isn’t easy to watch someone go when you feel it’s way too early!

    Although, I disagree with Jill. I wear my gray ribbon everyday. And I have for 10 years. Ordering different ones when one finally gives out. It’s my daily reminder of my dad with me. People ask what gray means or why I wear it. I get to share my story, enlighten people on brain cancer. I participate in any brain cancer function near me, which is far and few between! But I still keep my dad’s memory alive and am able to share his story. Others who know what gray means are excited when they see my ribbon because we “know” and we can share our stories.

    Please know I am forever grateful that our lives were linked together, no matter the circumstances. I wish you and your the best! I will continue to think of y’all daily.

    While “national cancer day” is one day or just another day to some people, it is an everyday for you and me and many others. A daily, constant reminder of one day, one MRI, one diagnosis changing the rest of our lives, never to be the same again.

    Much love and MANY hugs!
    – Courtney

  9. Your strength inspires me and I can not express how much I admire your strength. I hope that our support, from so far away, gives you a tiny bit of peace.

  10. Heavenly Father, Almighty God, may heaven be moved by this simple prayer. Lord, may your will match our hearts’ desire that Jennifer be healed. Cover this family with your peace. Take away Jennifer’s pain and nausea. Give Jennifer her smile back – return each piece that has been stolen by cancer. In the name of Jesus we pray. Amen

  11. I have been praying for you. For JLK. For this nightmare to not be true.

    I will fight with you. And I will write… Today I did write. To my senators. To congressmen. I will continue to write or call. And if I can figure how how to write the President directly, I will. Tomorrow, and the next day, and the day after that, I will fight with you.

    You are always in my thoughts and my prayers.

  12. I wrote to my congressman today. I mailed it today. I’ll do it again too. Today I did it thanks to you. I wish I could do more for you.

  13. too bad i cant yet doing some funds to help cancer organization.. but if i can i promise will do it someday.
    for now i just hope everyone including lovely Jennifer would be less hurt and be in peace.
    And Jonathan is amazing. Sure he would be a great brother and leader someday 🙂

  14. one thing i would add.. afterall.. this not that bad because heaven is really amazing and world is full of stress hehe so Jennifer is one of a kind who can live at heaven in such young age.. so lucky.. yes she is so lucky to have a wonderful family & wonderful experience in world and then moving to heaven. :’D yes she really deserve it…

  15. Libby,
    It’s been such a long time since we’ve talked and I was so excited to find you after all these years. It was not long after, that I became aware of Jennifer’s declining health. I’ve been following your blog and JLK…my heart breaks for you and your beautiful family. You are so strong and brave for that little girl. Thank you for letting us into your world and realizing the frailty of life.

  16. I have read your blog and I am heartbroken for you. What a sweet angel you have. I have volunteered at camp sunshine in Maine as a counselor for children with brain tumors and I have seen how horrible cancer is. I can’t even imagine what you are going through.

    I want you to know I am and will continue to pray for your little angel and your family. You are in my thoughts and prayers.

  17. You are amazing me with your love and strength. Cancer sucks. Your family is beautiful and your daughter is inspiring. I am so sorry for this.

  18. I lost my third child, my 8 year old son to cancer. It’s the hardest thing I’ve ever dealt with..Both my parents passed before I was 21 years old. I had already lost my daughter to a heart condition. I became so depressed I didn’t give my surviving son the love and attention he needed. Please, as hard as this will be to the family. Be sure to get closer to your other children. Before my son passed away he told me “You know mom, everything you love dies or goes away, but someday When God is ready we’ll all be together again”. When God is ready is the key. My son was 16 when his brother passed away and he has grown into a wonderful adult. But he missed out on so much.
    Just to let you know. My son “seen my mother and daughter in his dream and described them both even though they both passed Before his birth. There is life after death, something that keeps me going. I hope this helps you in some way, someday when the time is right. Cancer sucks

  19. I wrote both my state senators and my congressman. He’s an idiot, but I wrote him anyway. I’ll nag the hell out of him.

  20. Your family is so strong! I’m moved every time I read a new blog. I’m friends with your Fairy and I will write to my congressmen and senators!
    I pray for your family that you are wrapped in comfort. I have 2 boys of my own and can’t even imagine. Libby you are a fierce mom (even though we’ve never met). Your kids and hubby all are amazing from what you share and please know that my family is praying for yours every single day!!!

  21. I sent a message and a link to your youtube plea to two senators, my congressman, President Obama and the White House (organizing for action) on Facebook. I don’t know if it will help, but I pray it does.

    My heart goes out to you, your family and sweet Jennifer. I have no words to comfort you. But know that I am praying for her pain to be eased.

  22. I wrote my congress woman. I appealed to her role as a mother and why she should understand the pain we are living. I am going to wait and see if she contacts me back. Your son is so beautiful. His love for his sister is palpable. I am praying for all of you.

  23. Thank you!!!! I feel the SAME! I honestly couldn’t even be on any social media because it was everywhere! We fight this everyday. Not just one day a year where we change our picture to purple for a day. EVERY DAY. It should be cancer awareness day every day. ESPECIALLY for our children. <3 Praying for your family and we fight with you xo

  24. I don’t know you or your family, but I am so sad for the pain you are goibgvthrough. Life isnt always fair and this is terrible what your daughter is going through. I will write whonever I need to, to try to try to make change.

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