20 weeks

We got the mission statement completed. I should feel happy. I should feel relieved. One thing off my plate. ..

But all I can think is 20 weeks.

Tomorrow is 20 weeks. ..

I have never been so sad.

I never knew sadness could permeate to these depths of a person without destroying them. I hurt. I ache with such a fierceness I feel like I might be ripped apart from the inside out.

**21 weeks ago**
**This photo was taken 21 weeks ago**

 

20 weeks..

why? Why did this happen? Why are we allowing it to still happen to 7 more kids today.. and 7 more tomorrow. Gilroy Family Photographer | JLK Glitter Shoot-9

I have people from our glitter squad calling Senator’s offices to ask for the specific aide by title that we should write to about the lack of funding. And you know what some offices are saying.. No. We won’t give out there email address! I am so frustrated, disappointed, angry ..

hurt.

I hope this has the same impact on anybody reading my words. I hope it is a motivation to get angry and stand up and say this is not acceptable. I am tired of our emails going to a general inbox and getting canned replies.. Our government has the financial capability to save children..

save.  children.

The capability to heal children without drugs so toxic that their side effects kill kids like this 11 yr old boy who was at the time of his death was cancer free … so not counted as 1 in the 7 on May 31st

Gilroy Family Photographer | JLK Glitter Shoot-1013,500 diagnosed yearly

**my head is swimming and I was worried I would be wrong on my stats.. so I did a quick google.. and the top item was from the NCI. The arm of our government that provides.. or rather withholds funding from pediatric cancer.. “Although this makes cancer the leading cause of death by disease among U.S. children 1 to 14 years of age, cancer is still relatively rare in this age group.”**

Number one disease killer and rare .. that doesn’t seem logical to me.

 

20 weeks…

I don’t have the answer.. but I am willing to work to find it. I want to work with other organizations .. to band together. This is proving to be harder than I would have thought. And that breaks my heart in a way I cannot even begin to explain … I get it.. I understand these organizations are all started like Unravel.. . because of our child’s time with cancer either as a survivor or victim. But I know with every ounce of my being it is the only chance we have. We just have to find the right way to do it.

DSC_0067

 

I was so inspired being at the Lincoln memorial.. looking out at from those steps and imagining what the March on Washington looked like.  How people banded together.. both those directly impacted and those that were just tired of seeing the inequality .. People uniting together can make a difference in this country. It’s been proven time and time again. I don’t know how to do it .. but these minds and passion united can figure it out.

20 weeks.

Its been 20 weeks since she died.

and I have to admit. .. though it is so hard to do ..

 

I am tired.. I am scared I am missing moments with my living children for nothing. Spinning wheels and not making a difference in this epic battle for our kids..

actually

in a lot of ways I feel like I am in this for the parents.. the ones that I want to prevent from living this never ending nightmare I am trapped in.

I am so grateful for the help.. for the people stepping up to help Unravel..to help me.. To take the reins when I just need to cry and be a mommy grieving her daughter.. a mommy to four minus one. DSC_0036

because I am just so sad.

35 weeks since I became a cancer mom.

wow.

.. that’s sobering. I haven’t even been in this world of cancer very long.. let alone one of the losers.. I don’t even know what made me want to do that math..

but I can hope it was her. Reminding me to give myself some grace. To allow myself to pull a flower from the grieving garden and breathe its scent.

20 weeks tomorrow and a new month begun today.. another month without her.. my internal countdown to the 12th of July is instinctively turned on. .

The longest 20 weeks I have lived.. but I know not the longest 20 I will ever live. They all will be the longest..

til its my last 20 weeks.

 

Gilroy Family Photographer | JLK Glitter Shoot-11

..until there is a cure

36 Responses to “20 weeks”

  1. Libby,
    Don’t give up hope. Don’t give up the battle. Jennifer’s memory is alive in all of us that hurt for you. We won’t give up either. Hugs….

  2. Yes, give yourself grace. Your words are working and reaching us, inspiring us to act. Hugs to all 6 of you!

  3. You can’t give up someone has got to hear you and hear the cries of all the parents who are dealing with this it’s Just not fair….. Jennifer’s memories will live on forever.. we need to fight, March, protest, picket,speak out, Im here to help you fight…Big hugs for you.. Love4jlk

  4. I think and pray for all 6 of you daily. Such an unfair nightmare…it literally knocks the wind out of me…

  5. We will not give up. We can’t. Change will come. We love you all. All 6 of you. Jennifer will never be forgotten. Her memory will live on forever in so many people’s heart’s including mine. I love you all. ♡♡♡♡♡♡

  6. Libby, we are standing behind you and will help take a stand, either through Unravel or through our representatives. Hugs.

  7. All of these stats are so sobering and frankly, it’s ridiculous the way the government is responding (or NOT responding)…I hope Unravel can change that! Any way I can help, I will.

  8. It’s has to change. There has to be more we can all do as parents. It’s so wrong, so unfair to our babies. Please Lobby message me if there is anything I can do. I know your doing so much but if there is anything I can help with please message me don’t hesitate. I’m so sorry for your pain. Love4JLK always she will never be forgotton.

  9. Libby, Unravel is going to make such a difference. I am here, standing beside you, ready for the fight! You and JLK have already made such an impact on me. I follow a few DIPG Pages now to get more knowledge and it’s heart breaking to see kids getting a DIPG dx. Rare??? Really? That makes me so mad!! How can they still think DIPG is rare??? Kids are still dying daily from this monster and they have the nerve to still think it’s RARE. We will not give up and keep trying to make our voices heard. xoxoxo

  10. If anyone has the strength, bravery, persistence and compassion to do this it’s you. It will take all of us to make a difference but you are a natural leader and always have been. You inspire others but also are not afraid to call people out and make them do something! I believe in you and in this cause. When I am called to action, I will answer!!

  11. You keeping inspiring me and everybody else following the blog, daily! You’re amazing, Libby. Keep fighting.

    Hugs and love to all 6 of you.

    XO

  12. It is so good-hearted of you to continue to fight for other parents. You are strong, a great leader, a wonderful advocate.
    Following your lead, we will make a difference.

  13. The photos always touch me so deeply…. Fancy Nancy. And your love for each other. Counting the days with you. As always, prayers sent to Heaven for you to feel and see the signs that she is with you. Hugs.

  14. Tony Stoddard posted today that the first step is more awareness. Awareness leads to funding for research which leads to better treatments. I agree whole-heartedly. When my aunt caught breast cancer 16 years ago, her prognosis was dim- stage 4, in her lymphatic system, 25% chance of survival. She was involved in a clinical trial that she swears saved her life and is now a common treatment for it. Breast cancer awareness has done so much to raise funds etc. You are, if nothing else, raising so much awareness. It is the first step. There are already drug companies looking specifically into pediatric cancer treatments. CureFest will be even bigger this year than last. Action Days at least get our elected representatives to listen. What I’m getting at is don’t lose hope. It’s a frustratingly slow process, but it isn’t hopeless. There will be a cure. And, in the meantime, Jennifer’s cells and Unravel will help make strides in that direction.

  15. I second what Emily said. It’s slow. But it’s only been a generation or so since parents lost children to diseases like polio and diabetes. These aren’t death sentences any more, and some day, maybe not in our lifetime, but some day, our children’s children will look back and remember the brave ones who fought for research and saved a generation.

  16. Hi Libby I meet you today at the dentist office I know you are very sensitive today therefore didn’t mention much because I did not want to make it any worse at the dentist’s but I think you can see my email on your side I would like to let you know that I am game for anything you need to fight this monster illness. Feel free to let me know what i can do to help.

  17. My heart breaks for your entire family. Jennifer’s life has touched so many people. I was just looking at the glitter pictures. She was so happy and beautiful doing them. If anyone has any connections with a fingernail polish company, I bet they would be more than willing to use some of her beautiful pictures to advertise their product and would be willing to give a percentage of profits to pediatric cancer. A good dose of PR goes a long way. Libby would you consider it? If so, does anyone have the connections?

  18. Libby, I have been following your blog for months as I had seen your posts through friends in Gilroy. Many times, I have felt compelled to respond to your blogs after reading, and crying and knowing that the sadness I felt in that moment was not even a half of a percent of what you were feeling. You have made me hug my children harder, turn more no’s into yes’ and force myself to be in the moment with my children. You have also made me aware of where money goes in terms of cancer research. I am so amazed by your strength and ability to express yourself in such a raw and real way that has forced me to make changes in my own life. I have young children. I could easily be you and I thank God that I’m not. But I know it could be my best friends kid, a coworkers kid, a family members kid and I want to put effort in research and prevention now. You and your family will be in my prayers.

  19. No matter how busy I get, I always read your blog. I Always forward the events on Facebook and the blog posts I feel are especially impacting to the public, not just us that (I feel) know you. You are SO very loved. Jennifer is SO very loved. It’s unacceptable you cannot get a simple email address. God forbid they have to actually work. My boss may possibly have some sort of connection in California at least. I will see if he can get an email or some sort of connection. I pray for you, Tony and all four kids. Much love from our family to yours.

  20. I’m sure you have, but I just learned about St. Baldricks this week. Do you know it. They seem pretty big and ONLY fundraiser for PEDIATRIC CANCER. So awesome. They have events that allow people to gather donations for them to shave their head! I think the genius is in how those people feel, something physical to do that is obvious, that makes people ask why they did it, to spread awareness. To have something that doesn’t just go away the day after the fundraiser. I immediately thought of you…

  21. The March on Washington….I think you’ve hit the nail on the head with that one. We need to organize a huge event with EVERY organization/foundation fighting pediatric cancer – all banding together – and taking on DC. You are entirely right about what it takes to make real change in this country and it’s time to stand up and show Congress, the President, the WORLD, that this “group of parents” will not go away. I would be honored to be a part of something like this and I think it’s (PAST) TIME this happens!!!
    Much love to you – always reading, following, being inspired by JLK…

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