Glittery knowledge

Music.

Today was a day of music and songs. Both things important to Jennifer. She made up her own songs and she loved to sing along with ones we were listening to.

We have been continuing the sticker charts for the boys. Even though last night wasn’t a stellar performance we took them out for breakfast this morning since they had already filled theirs up. We didn’t give them any for last night (but we didn’t point that out either) we felt like showing them the reward for earning a “going to bed” sticker will be a good motivation.

We went to Black Bear… the same place Tony and I went to the day I broke down in the parking lot.  We took my car. The first time since she died we have all been in it. Jonathan didn’t want to.. well .. because daddy’s car can go faster… Buckled in he said I miss sissy. But we carried on.  On the drive we heard Brave. Tony said he doesn’t feel a strong connection to that song. Its the one we played at the end of her services (which I haven’t watched yet. Plan to do it this Friday then post)

IMG_4119

Breakfast Jonathan made me proud. He is stepping up and helping his siblings the way Jennifer did. Nicholas started to cry when Jonathan got the blue balloon…the color they both wanted. Jonathan gave it to Nicholas. We told him he didn’t have to, but he wanted to.

While Tony buckled the boys in (actually Tony and Jonathan since he helped Nicholas) I read my email.. a note from a friend had me choking up. About how Jennifer is like glitter…you can’t forget her…that glitter never goes away…

Gilroy Family Photographer | JLK Glitter Shoot-57

Tony started the car and Roar was already playing. I almost chose this as the end to her services… but opted not to. This was Jennifer’s favorite song. We used to substitute words for her when we sang it at the top of our lungs together. I am glad I didn’t use this one.. . its kept it a more personal anthem.

We took my car through a car wash. Nicholas got a little freaked out but Jonathan told him it was funny… . and to Nicholas, that meant it was funny. I am glad we did it.. but it was a little hard to see the remnants of the cherry blossom tree washed away. . just the outside was enough for today.

IMG_4123

We took the boys to my parents since we had an appointment scheduled for the mortuary a little later in the day. On the drive I called her hospice care facility. This morning Jonathan asked if he could go to a “talk doctor”. I said yes and asked about going back to his old one. He said no. He wanted a new one. One he could just talk about Jennifer with. This kid.. his emotional intelligence is startling sometimes. I had spoken with the people at hospice about seeing him while Tony and I go to a child loss support group… so after his nudging earlier I decided it was time to call.

On hold there is music. Just instrumental. Tears. I couldn’t handle it, it reminded me too much of the calls we made . . the final one nearly 5 weeks ago. . .

..she is still throwing up.. another headache.. . I think she is having seizures.

That music sent me whirling right back.

I hung up. Sorry John Boy… too much for mommy.. .

Later driving in the car Brave came on yet again… I do love how often we hear “her songs”. we also heard “let her go”…the song we walked into her services with. I told Tony I wanted to turn it up even though it didn’t do the same thing for him.. I turned it down at one point just to tell him that I feel like this song is now from her to us. At one point it was me to her.. then my brother to me… now its her to us.

.  . he liked that.

Oh how I love this man.

(and if he is extra nice tomorrow I will know he broke our rule and read the blog!!)

IMG_4124At the mortuary the smell was so strong. It reminded me of when I went there to see Jennifer in her casket. I sat down and started to feel that familiar swim in my head..  lightness taking hold. Luckily they came to get us and in the office the smell wasn’t so overwhelming. We had baby Charlotte with us. I am so thankful for her. She forces us to do something in the hardest moments.. we have to take care of her. Tony and I talked today about getting to still raise a girl even though our daughter is gone. How lucky we are… but also what we think will be hard.

For me, its that she should be doing things with me for Charlotte. When I will put Charlottes hair in pig tails the first time Jennifer should be there. We should look back at pictures from the first time I did it for Jennifer. It was fathers day..Tonys first one she was 2 months younger than Charlotte is now..

OLYMPUS DIGITAL CAMERA OLYMPUS DIGITAL CAMERA

We planned out her headstone. Excited isn’t the right word…but maybe it is. I liked getting to talk about it and plan it out. To be just what we want. Personal. Meaningful.

. . hers.

Planning something for her makes me feel good.

. . .like her mom again.

Right after we left we got a call that our credit card was compromised. Luckily they didn’t freeze the account before we paid our bill at the mortuary, we were literally in the parking lot of the place though!

At one point, a little earlier in our day, my phone rang.. it was hospice calling to see if we were still considering joining the support group. We were and tonight we did.

Tony was fairly resistant to the idea but open to giving it a shot. My parents kept the boys and my sister took the baby. Next week Jonathan will come with us to have his own appointment. We were both pretty nervous. I was a little taken aback by how nervous I was.

…it was good. I think better even for Tony than me. We will be continuing to attend.

Afterwards we went out to eat. I had mentioned a random restaurant from our past…our pre-celiac days that we loved. Tony and me… and Fairy too. A buffet place with salads and loads of carbs. We went before Jennifer and with her. We would talk about how we were going to take all our kids here as our family would hopefully grow.

But with her celiac diagnosis we couldn’t go anymore. How many times did I lament that? How many times did I feel sorry for myself.. for us about that? Time wasted for sure.

There was a kid there.. maybe about 10 with a feeding tube. With hair that appeared to be growing back in. It was jarring. How it seemed to pull me back into my memories.. I think I stared as I walked past. In the restroom I thought well if they ask I can say..I’m a cancer mom.. but then I realized I really can’t. They would never want to hear from me. There would be no bond. No comradery.

I am their nightmare.

… mine too actually.

When I walked past again I kept my head down.

Almost home we were talking about ideas for the non-profit… Specifically about our desire to spread awareness…familiar notes started filling our car.. .  ones I had never heard on the radio.

 

“The snow glows white on the mountain tonight,
not a footprint to be seen.
A kingdom of isolation and it looks like I’m the queen.
The wind is howling like this swirling storm inside.
Couldn’t keep it in, Heaven knows I tried.
Don’t let them in, don’t let them see.
Be the good girl you always have to be.
Conceal, don’t feel, don’t let them know.
Well, now they know!

Let it go, let it go!
Can’t hold it back any more.
Let it go, let it go!
Turn away and slam the door.
I don’t care what they’re going to say.
Let the storm rage on.
The cold never bothered me anyway.

It’s funny how some distance,
makes everything seem small.
And the fears that once controlled me, can’t get to me at all
It’s time to see what I can do,
to test the limits and break through.
No right, no wrong, no rules for me.
I’m free!

Let it go, let it go.
I am one with the wind and sky.
Let it go, let it go.
You’ll never see me cry.
Here I’ll stand, and here I’ll stay.
Let the storm rage on.

My power flurries through the air into the ground.
My soul is spiraling in frozen fractals all around
And one thought crystallizes like an icy blast
I’m never going back; the past is in the past!

Let it go, let it go.
And I’ll rise like the break of dawn.
Let it go, let it go
That perfect girl is gone
Here I stand, in the light of day.

Let the storm rage on!
The cold never bothered me anyway…”

I sat in the car in our driveway and let the song finish out. It meant something else to me before.. when I considered using it at her services. I have a feeling the meaning of these lyrics will constantly change.

Tonight it spoke to me. .

with clarity.

Of such power. Of strength. Of steadfastness.

Of who I want to be now.

A voice that cannot be quieted in the fight against childhood cancer.

So let me share.

When I was Charlottes age. The prognosis and treatment for DIPG was the exact same as it is now, I would have gotten the same treatment as Jennifer.

In 20 yrs only two new cancer drugs have been approved specifically for pediatric use. (in case your wondering 23 for adults in 2012 alone)

Glitter sticks to you…you can’t wash it off. .

Knowledge.

 

Its the same and now we know…

Gilroy Family Photographer | JLK Glitter Shoot-31

 

45 Responses to “Glittery knowledge”

  1. I believe Johnnie sends me songs too!! And your right, you could have heard a song a hundred times, but then it takes on a whole new meaning and the lyrics speak to you. It’s a message from heaven, I’m convinced!
    Keep on keeping on. Love and prayers.

  2. And Jennifer sticks to all of us like glitter! Which is why she will never be forgotten 🙂 I wake up after midnight ( I notice your blog posts sometime after midnight usually ) just to read ur blog than go back to sleep. Jennifer and you Libby have touched so many of us. I would like to help some how in spreading awareness n knowledge in DIPG and childhood cancer for that matter. No parent should have to go through what ur going through n JLK did not need to go through what she went through. Therefore they do need more research and studies and improved medicines and cures. I’m here to help anyway I can. When u feel up to it, please email me what u need help with to spread the word and knowledge. Much love Libby and still praying xoxo
    Bissellx3@att.net

  3. I both smiled and cried with this blog post! I feel, 100%, that Jennifer was speaking to you through the songs. When you said planning the headstone made you feel like her mom again, I immediately thought, “You are always her mom.” Every second of every day, you are her mom. That is never going to change.

    I smiled when I read that you are going to the support group and your discussion of the non-profit. Since I started reading your blog, I thought that you are going to do great things in Jennifer’s name. Spreading awareness is already happening. I’m praying the next step is a cure, or, at the very least, a new treatment for DIPG that gives kids a better chance at survival. 20 years and no change is pathetic. Donating her tissue-amazing. I’m sure no doctor wants to ask for it, but they all desperately want it to study. To DO SOMETHING about this terrible disease. So, once again, thank you. You may not feel it, but you are brave. Jennifer feels it, knows it, and is trying to show it to you, too.

    Lots of prayers and virtual hugs today.

  4. Wow. The photo of Jennifer with the glitter gets me every time. She is stunning. These pictures are so much more, keep going Libby – you are making it.

    The history of childhood cancer makes me sick to my stomach. It helps put things in perspective. Thank you for sharing so we can finally start to do something about this.

  5. I am so proud of you. It sounds like even though the day was busy and tough, you found much good in it. Those baby pictures of Jennifer are just beyond precious. She IS glitter. I will never forget her. I will also never forget the four percent of federal funding for pediatric cancer and the minimal progress there has been finding a cure for DIPG. I hope we all can change that. Sending you hugs

  6. You will honor your girl in all of the things you do…from the ways you love and care for her brothers and sister, to the awareness you will raise.
    Simply surviving right now is more than enough. It is admirable.
    Peace, grace and glitter to you.

  7. Music. Some if us are so intune with the feeling it gives us that you can almost tast it. Music is my medication, my inspiration. Lets do this!! I’m ready along with everyone here to help you fight. And we have such a beautiful inspiration.

  8. Today, for me, I think this is the most powerful blog you’ve written. With clarity … you found your purpose. You are getting stronger with every sign you receive from Jennifer. I don’t know you but I’m so proud of you and who you are now! Peace be with you Libby <3

  9. It is absolutely disturbing to think that so little progress has been made for DIPG. So awful.

    Sharing your story has ignited in me a desire to be more active in childhood cancer communities. I was diagnosed w/a rare childhood cancer my first year of college. I was a lucky one… of all the young people I met in my journey, none of them survived. (I attribute my success to treatment I received in Germany that wasn’t offered here in the states.) My point in sharing this.. I sort of moved on to mommyhood and hated looking back. Jennifer’s story has catapulted me back into realizing more needs to be done for rare childhood cancers… esp DIPG where so little hope is offered.

    I know I am rambling… sorry. My “word” of the year is LIGHT. I chose it as a New Year’s resolution… I chose it thinking of my own faith and want/desiring to grow in faith and look for that light. I know see another meaning– bringing light to rare childhood cancers.

  10. I never know what to say. Then I get an idea and I think “no don’t say that…no no that doesn’t sound right”. I don’t know you but I am so touched but you and your story. I want to help somehow. Thank you for the awareness you have brought to me I never knew before about childhood cancer. 2 drugs in 20 years…..nope that needs to change. Thank you for sharing. I hope you continue to share.

  11. It sounds like the tough but good day will be one that continues to give you strength. I am amazed by how brave you are and proud of the steps that you will take to help raise awareness for DIPG. You have an at that will be by your side to make a difference and Jennifer will never be forgotten.

    Love and hugs,

    Vanessa

  12. WOW. Glitter truly never goes away. It sticks…to everything! Jennifer has stuck to me and so have you Libby. Lets fight this horrible cancer together and lets do it for Jennifer and the other 7 children today. You are amazing!

  13. I see glitter or sparkles and Jennifer is in my thoughts. I hear Roar or Brave and now, Let it Go and Jennifer is in my thoughts. I read your blog evry day…and Jennifer is there in my thoughts. I wear my Love4JLK ring and Jennifer is in my thoughts. We’re all still here Libby…and not going anywhere. Progress must be made, protocols advanced and yes, cures found. Pediatric cancer awareness…let us roar!

  14. I will be sticking along through your journey and when you are ready, I would like to help however I can with your non-profit and bringing awareness! I think I speak for a lot of other people too, we are ready to fight for change, in memory of JLK and so many other precious kids. <3

    I did not even know what DIPG was till learning about Jennifer but I am glad to have that knowledge and have made a promise to God to not let this just be another heartbreaking tragedy that you read about and move on. Glitter sticks and I am gonna stick it out till more is done to battle childhood cancers! It is the best we can do to honor sweet Jennifer.

  15. Jennifer is an exceptionally beautiful child. Her darling face can never be forgotten. She is now the face of change. The face of a cure! Picture the Earth coated in glitter. Know that she is everywhere, all around, cheering you on as you fight the good fight and raise her siblings with all the love and joy you raised her with.

    Thoughts and prayers always! I’m a firm believer that music can reach you when little else can, and can work to soothe our aching souls.

  16. Wow !!! There is so much I want to say in response to this post.

    #1 – MUSIC – It heals. It touches the heart. It brings out emotions that need to be released. When my mother passed away, I was driving home from counseling and the song “Everything I Own” (by Bread, from the 70’s, so pretty strange that I would hear it). Every word spoke to me. My mom. I cried. I ached. But, somehow, it also made me heart feel good.

    #2 – I hear so much “progress” in your posts. I hesitate to use that word, as I know there is no “progress” guidelines. I hope you get what I mean.

    Lastly, I don’t know if you read all of these, but I have something that I really want to send you, if there is an address that I might use. If you don’t feel comfortable, I totally understand.

    Continue to take good care of yourselves !!!
    Love,
    Diana

  17. I’m sorry….one more thing….(for some reason Jennifer and your family have touched my heart so profoundly)…if you should ever want to share her service video (I don’t know if the service was public), I would be honored to watch it. Seems like a good way to maybe spread awareness. Just a thought.

  18. I have shed many tears over your blogs and today I shed some more BUT these were different tears as I felt hope in your message today! You had a d
    ay of ups and downs, of firsts in moving forward, and you did it! I love the lyrics and agree that the meaning will continue to change as time goes on. Keep trucking Libby. . .you are on your way to where you need to be once again– a loving wife, wonderful mother, strong, confident, caring person to family and friends AND a woman who will make a difference in this world in honor of memory of her beautiful daughter!

  19. Hi Libby-
    I have so many “likes” on Facebook feed so I decided to visit your blog again today. It so hard for me to come here, not because I don’t care because I definitely DO, but because it hurts to revisit the deepest and darkest days of my DIPG experience with my son.

    I have to add that the diagnosis has not changed for even longer than you & I have been alive. It has long been believed that Neil Armstrong’s daughter had DIPG and died in 1962 and wouldn’t you know it, was treated the same way- by radiation.

    Here what is found about her.

    In June 1961, Karen (Armstrong) was diagnosed with a malignant tumor of the middle part of her brain stem. X-ray treatment slowed its growth but her health deteriorated to the point where she could no longer walk or talk. Karen died of pneumonia, related to her weakened health, on January 28, 1962.

    This is too long to wait for hope.

  20. What can we do to raise awareness for pediatric cancer? It is appalling as I just don’t understand why more isn’t being done to help these kids to live and to thrive! I am sending you love today and as always you and your family are in my prayers.

  21. I’m here, cheering on your cause, my cause now. I can’t wait to see what you will do with Jennifer’s legacy. We want so much to help!

  22. I continue to be inspired by your courage and raw honesty in sharing your journey with us. The love you share with JLK is exactly like glitter; once “spilled out” it’s always there, everywhere, impossible to get rid of! I hope it sustains you in some small way to know how much you inspire us all!

  23. When I looked closely at Jennifer’s picture (the first one of the glitter), I noticed there is a beautiful heart above her head. Amazing. She is with you always!

  24. Words cannot express how sad I feel for you and your family- so I will continue to pray for you–

    God Bless you,

  25. Educate us Libby.. We are here to learn. Then we will spread the knowledge and educate others .. Until the difference is made.

  26. Libby

    All your posts are incredibly moving and powerful, but I think today’s is one of my favourites

    I’m glad you are beginning to find a glittery trail of hope you can follow. I believe Jennifer and God are guiding you together. I imagine that whenever you hear one of her songs she is dancing and singing right along with you in heaven.

    Glitter never goes away, and you are covered in the stuff. Nothing will ever change the fact that you are Jennifer’s mum. Her calling card shines from your every pore

  27. I also wanted to let you know that I have started a tradition of playing Brave and Roar for Jennifer every night before I go to sleep. I may have never known her, but your writing has made me love her. Those songs are indelibly connected to her in my mind. Xx

  28. Hi Libby, like many of your tried and true followers who have only “met” you and your amazing daughter through this blog, I thought you’d might be interested in this article. I imagine you’ve already seen it, but I thought it positive. http://www.usatoday.com/story/news/nation/2014/03/16/autopsy-brain-tumor-research/6181283/

    I hope that you continue to find more songs that buoy you up…and I imagine it will help provide more three demensional memories too over time. You are an amazing mother, wife, and so much more.

  29. I read your blog everyday and it always touches my heart, you and your family are in my thoughts and prayers daily. I’ll never forget about your baby girl Jennifer and I’m sure neither will a lot of other people. I think she was and does send you signs when you need it the most, like the songs and having your sister show up at your door 🙂

    I really like the photo of Jennifer throwing the glitter up, it looks like she made a heart With it while doing so with her in the center 🙂

    Prayers to you

  30. This post made me so calm… maybe that isn’t the right word…but I felt YOUR peace. Your hurdles are far from over, but I LOVE that you are seeing/feeling/knowing the signs Jennifer is giving you! I’ve mentioned before that I follow Mitchell’s Journey, a young boy who passed a year ago from Muscular Dystrophy. His father still blogs…tonight, he wrote these words and i found them very profound: ” Sometimes in my sorrow I am pained by the price of love, but I would rather have a broken heart than an empty heart – no matter how much it hurts”
    Your heart may be broken (as it should be), but it is full Libby….full of Jennifers love for YOU and all of her family! xoxo

  31. You are so brave and soooo much stronger than you realize. Still praying for you and your beautiful family. Hold on tight to each other! ❤️

  32. I couldn’t resist the impulse to take the program from the service, with Jennifer’s school picture on front, and hold it up to the computer screen so she could see the pictures of herself in pigtails for the first time. I know she has other ways of seeing, but my body moved faster than my mind.

    Jonathan giving away his balloon, with the wanting to see the talk doctor…oh my god, what an amazing kid. Thank God he is so in tune with himself and his emotions: you and Tony can take credit for that along with God. You have done so well.

  33. wow. i am so impressed with you and Tony. you are raising your kids well. Keep up the sticker charts. Kids respond very well to them… it always seemed to me changing up the reward/points helped…

    Jonathan is stepping up of course because you are being consistent as you can be. the kids thrive on your love and care.

    The glitter shoot was such an inspired thought. It sticks with people… She sticks with us… as glitter does.

    one step at a time…

  34. Hi Libby

    I know what you mean. I was only able to make a few decisions for my son as his mom. And they were decisions with horribly sad consequences. But I still hang on to those decisions where I felt like his mom. You are exactly where you need to be. Email me if you’d like to chat. Anytime.

    Much love.

  35. Let those songs and memories continue to fuel that fire in you! Pour it into your family, your non profit, raising awareness and kicking pediatric cancer’s ass!! We’re here to help you, it’s our way of honoring that amazing girl we never got to meet…

  36. You are going to do amazing things in the fight against childhood cancer. Jennifer will never be forgotten! Her donation towards research is just the beginning and her purpose is profound, I can feel it. I am so blessed to read your inspirational words, as I am sure everyone who reads this blog feels. I am eternally grateful to have “met” you. Still praying.

  37. Libby~
    I have been reading your blog since January…. I actually stayed in bed one Monday reading your blog from the start in October to catch up on JLK ….. I cried most of the day 🙁
    There is not a day that goes by that Jennifer does not cross my mind…. I actually think about her, you and your family a lot during the day. Hoping and praying that every day that passes may get just a little easier for you.
    My husband would not let me read your blog to him after a while…. He said it was too heart wrenching ….. Hits to close to his heart ( we have a young daughter as well). So I share your blog with my dad (he is a wise man)……. I read him “Forever 6″…… He saw her photos and said ” Man what a doll”……read him what your wrote about not being able to survive this…….He said ” She will……it’s just going to take time”……. I believe him. I also believe your other children will inspire you to live for Jennifer …..but you must mourn first.
    This morning I heard a song that stopped me in my tracks……… It was “let her go” but a different version of it. I knew I had heard it but had to stop and listen to it to remember where I had heard this beautiful version of it cause it was not Passenger singing it. Then it hit me …….I think it was the version you picked for JLK’s funeral…… I attended…… Did you pick “let her go” sung by Jasmine Thompson? It is such a beautiful version of that song……..everything that day was beautiful and just perfect for her. You honored her so well!
    I will keep reading your blogs and praying for you and your family~

Leave a Reply

Your email address will not be published. Required fields are marked *