answers

I woke up feeling like I was hit by a truck… weighted down and sluggish.

Shoulda just stopped there.. but I didn’t..I went for a run. It was a crappy run.Oh and full disclosure since I hope to see so many of you at the 5k in May…I use the term run very loosely.. its more like a clumsy jog even on a good day!

Then we loaded up to go to my nephews birthday party at Chucky E Cheese.. There was a bar next door to it.. Shoulda just gone in there..

I couldn’t handle being there. My sister had Charlotte and Tony was with the boys somewhere so I walked out and texted him that I needed to go for walk. I felt totally overwhelmed…this feeling like I wasn’t fitting properly in my own body.. like wearing a flip flop on the wrong foot.

I wish I could handle this stuff.. I wish I didn’t hurt in a way that I cannot control around other peoples joy.. It feels so unfair to my boys to not go.. .but it also feels unfair to just bail out. Honestly I don’t care. I could have sat there and played and watched them and cried.. who wants that lady at their party though?? And Jonathan was having a good time, I know seeing me hurt like I was would have ruined it for him.

When it came time for pizza Nicholas was asking for me.. I hate that my misery impacted his fun. . . I returned at exactly the wrong time just before singing happy birthday.. I wanted to run..literally jump out of my seat and run away.. but I also didn’t want to make a scene… I did my best to stifle the tears and sing along.

Tony and I talked on the way home about me not going to these things.. but then I would have missed out on my living kids moments.. Charlotte eating pizza, Jonathan in the ticket blaster and Nicholas playing games…. even Tony got in on the action with Jennifer’s god father, my god son…

 

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one name missing.. I always feel like I am having a incomplete thought when I mention my younger 3 without saying something about her..

Jennifer.

Jennifer would have been taking pictures in the photo booth… and hamming it up on the rides.

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Now I can continue.. leaving her out would have eaten at me…

Then I walked. And thought about her… about how the hole where she is supposed to be, it is getting larger instead of smaller. That just doesn’t seem right.. .when does it start to like its healing some.. or at the very least not getting worse.

Does that ever happen or will I just become better at managing it?

I feel like a giant open wound walking around.. the slightest bump causing me to bleed out all over again.

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On my walk I found a perfect dandelion. Jennifer loved dandelions. Her favorite part of our family walks this time of year was finding them and blowing with all her might.  I debated picking it.. I had already done one.. this one was so perfect.. I did pull it and made a wish.. out loud special and private. .. hoping she heard me..

From the moment she was born I became Jennifers mom. A proud badge I fought so hard to wear. As our family grew so did that title. In some ways though it feels like now I am just forever Jennifers mom.. . in such a different way then with the other three… I never wanted it like this though.

I want my old title back.

I look around places like this.. filled with families.. smiling happy families and I cant help but wonder the question I fight against asking every day..

….. . why?

Why my daughter? Why my family? Why Jennifer? I look at all these kids with their parents and think how inexplicably lucky they are. . .

but then again maybe not.

…. 46 kids are diagnosed a day with cancer..

I had no idea. 46 kids.

I think, like they don’t know my story… I don’t know theirs.  A humbling thought …but short lived as I wonder again why..?Gilroy Family Photographer | JLK Glitter Shoot-3 Why couldn’t she have been number 47? The one that narrowly escapes becoming a statistic. Instead now I am knee deep in knowledge I never wanted to be sharing..

stuck to me like glitter.. you can see it.. something a little different about me..

loss of a child does that to a person.

Gabriella Miller  died 2 days before Jennifer was diagnosed. This little girl who also had DIPG ,who in so many ways embodies who I want to be when I grow up… She was out there… sharing and advocating.. How did we not know?? How do people not know the facts?

Why did Jennifer have to become..1 of 46 on her sixth birthday? Since then the statistics just kept piling on.. 90% of kids with DIPG radiation buys more time.. she was the 10%. Average length of life after diagnosis is 9 months. She didn’t make the good part of that statistic either.  ..7 kids a day die from cancer.. yup nailed that one too.

I guess today some of the heavy sad fog is lifting to reveal a layer of anger.. frustration.

So I put it into action.

Booked my hotel to go to DC. I get to be one voice of 150 that will speak directly with congressional representatives and their staff. Its called Action Days. I am excited for it and hoping to learn a lot about how to find my way in this still new world of pediatric cancer.. . Tony and Charlotte are coming with me..

We also added something to our spread the glitter page to make it really easy to write to your representative about the Caroline Pryce Walker Childhood Cancer Act. Please go check it out.. and if you agree show your support…

even if you disagree ..just be knowledge and opinionated! That’s all that matters… that’s what we need to make change.

Before I started writing I thought I was just sad.. . I had no idea how angry I am today until I started writing. I so badly want to do more with my anger right now..be a real catalyst for change.. .  but this is a start.

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I got a picture today from Jennifer’s preschool teacher. She also had her at summer camp last year. The first thing I did without even really thinking was zero in on her eyes. The picture was taken just 4 months before she was diagnosed. . 7 months before she died..I looked to see if there was any crossing.. . to see if I missed something. Its a gorgeous picture. I should just enjoy it

. . .instead of looking for answers..

 

I am hoping that tomorrow I wake up more ready for the day. .. after 3 such highly charged emotional days I need a respite from the constant grief. . I need to wake up not asking why…

..there is simply no answer.

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34 Responses to “answers”

  1. Dammit. No answers despite the blog post title. Thank you for all the pediatric cancer statistics, and I’m so glad you are going to Washington, D.C. to make change. I hope healing days will come.

  2. May I suggest Kateleong.com – a courageous mother who lost her little boy a year ago. She has dedicated that first year to making her son proud and raising his siblings the best she can despite her grief. She blogs nearly daily (she also has an infant daughter like you) and her strength and courage is quite remarkable. Thought maybe it would be helpful to you as losing a child is quite an exclusive club that no one can fathom unless it’s happened to you.

  3. You are an incredible mama to all four of your beautiful children, and you are a hero to so many others. I admire you so much. So grateful you are in our lives. Love you and thinking of you always! <3 Liz

  4. Again, I must say out loud, “Libby, you Rock!”
    D.C. bound and ready to bust right open. You will articulate some sense into these politicians in Jennifer’s name. I’m behind you 100%+. Off to write some more letters. HE is guiding you to do this with your daughter Jennifer in arms. Have faith, Dear Libby. Continued prayers for you and your family! You CAN and WILL make a difference!

  5. I am so sorry. I just wanted to share with you that my world has changed drastically since gaining the knowledge and belief that souls come to earth with a specific contract to fulfill, one they choose and one that gives/teaches their soul exactly what it desires or needs to learn/experience. It has helped me to stop asking why and to stop looking at things from a fair or unfair perspective. I believe with all my heart that your beautiful Jennifer knew and embraced her journey long before you ever met. I pray that the pain will soon shift to healing for your family. I read and pray for you every day. If you are interested, the blog channelingerik.com has changed my life and I believe it is truly enlightening, especially for those that are navigating life after the loss of a child. Big hugs Libby!

  6. Libby, your courage and strength amaze me. I am proud of you for going to DC and Chuck E Cheese. You have my support. Sending lots of hugs and glitter!

  7. Good Job, Libby! You go get ’em! Have some big posters made at Costco of those lovely Jennifer pictures! Personalize this fight! Make 4 x 6’s to hand out as calling cards with your blog on it.

  8. Libby, I saw this article and immediately thought of you and your family –

    http://www.thepostgame.com/blog/good-sports/201404/jamie-moyer-foundation-camp-erin-network-grief-one-last-hug-hbo

    Still reading daily. You continue to amaze me in the ways you go through each day with grace, even if it doesn’t feel like it.

    I cannot wait to hear about your experience with Action Days. In the meantime, I will still be reading. Sending positive and healing thoughts your way.

  9. Libby,
    Thank you for the opportunity to contact our members of congress, and thank you for the opportunity to participate in this fight. See you at the 5k.

  10. I’m do glad to hear your going to DC to speak that’s wonderful. Libby even thought I don’t know you personally I feel like I do and the love I have for you and your family of 6 and the love for Jennifer forever in my vocabulary and in my heart. If talking about Jennifer on a every day basis helps you stay close to her then do it. I will never get tired of hearing your stories and blogs and most of all your pictures. I call us all team Libby and the love of JLK. Big hugs and Angel kisses

  11. I agree with Krista, brave for you to go to DC and to CC as well. Please be gentle with yourself, you are in in unchartered waters here. I hope all of the positive thoughts, prayers and most importantly, the activism you are inspiring will lift you on the days you most need it.

  12. I can not begin to imagine what you are going thru. I have two boys and I don’t think I would survive losing one of them! You are a inspiration not that that is what you may want or need to hear at this moment. I just hope that one day the grief is lessend and manageable. Your daughters beautiful soul makes me a better mom so I thank her for that! Your openness has made me a better mom a better wife hell a better person. Thank you for sharing your most precious gift with me, we share the same name me and your amazing daughter and it makes me proud even as a grown woman to say that! I will not try to give you some time heals all wounds cliche but will tell you that every day that you survive this makes the world a little better because you not only inspire and bring perspective but are continuing to be the mom your oldest daughter knew you were and are! Thank you! I am sorry for rambling.

  13. even though you don’t know me, i wanted you to know that i’m still here. i may not comment every time, but i read every single post. and i am here for you, with you, in spirit. please continue to hang in there. so many prayers for peace and grace for you and Tony and your youngest 3.

  14. So many times reading your blog I feel like I am reading my own thoughts of this journey we were both forced on.I’m sure Jennifer is so proud of you for being a voice and wanting to make change in her memory.Keep taking those baby steps toward healing you’re doing great.Continued prayers always.I hope the really hard days become less and less.

  15. I followed the link on your Spread the Glitter page and lent my voice to the (hopefully) growing masses of us who are fighting for increased funding, research, time and attention for childhood cancers on behalf of the children who no longer have a voice.
    I wanted to say: Thank you so much for having the courage and strength to be a “bridge” – despite your grief, anger and despair over the loss of your beautiful girl and despite how unfair, unreal and undesired your role as a mom who’s lost a child is – between those of us who want to help and the *ways* we can help. I will continue to lend my voice whenever I can, in every way I can. In Jennifer’s name and in the name of the countless voiceless children who have left and will leave our lives much too soon.

  16. I am so in for the 5k! It will be my first and I am honored to be supporting such a great cause. So much love4JLK <3

    Nikki & Amya

  17. Hi Libby – I live in DC (very close to Capitol Hill where I imagine you’ll be testifying), so if you need anything at all while you’re in DC please do not hesitate to ask. I read your blog daily and cannot put into words humbled I am by everything you, Tony, and your whole family do to love each other and carry on in the wake of such loss. All my best to you all, all the time.

  18. As I’m sure you’ve come to realize, there is no prediction of how you will handle any moment in time. Your good intentions may go to pieces fairly quickly. Or you may be able to get through something you thought you may not have thought you could. The important thing is that you are trying for 3 of the right reasons. And I suspect that a long time from now the edges will dull and life will be more manageable while you will have figured out how to love and honor your glitter girl for eternity.

  19. I am so sorry for everything you have been through. I don’t know if you can take any comfort in this, but we were in church yesterday, and the priest was telling a story about members of the parish who had given birth to a sick little girl. He babptized her and she died at 33 days old. The funeral had been the day prior, and the grandmother got up to give the eulogy and she started with a comment that said, “as parents, our ultimate job is to get our children to heaven. For some, that only takes 33 days, and for others, it takes much longer.” Please know that you did an amazing job with Jennifer, adn I know you will continue to do so for all of your children.

  20. I’m so sorry you are hurting! Something you said about your skin not fitting right, right now, reminded me that when our daughter’s friend died at 18 the album “Be OK” by Ingrid Michaelson blasted in her room and our car. The title song is just how we all felt, and some of the other songs on the album too! I’m sure one of her songs talks about her skin not fitting right too.

  21. I wish I had some answers…any answers. I have nothing. I don’t really know if there are any answers. I’m so sorry. I prayed again for you today specifically around 5:00 idaho time. We were having snacks before football practice. One of them was gluten free pretzels. Always in my heart and mind.

  22. I am proud of you for going to DC to meet with the congressional hearing. Your family has been through so much and I hope your speaking with them, plus our support will change how children’s cancer research is funded.

    Sending you all love and hugs.

    Vanessa

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