“Go tell it to your blog.”
I just overheard that on Phineas and Ferb, so, ok. Here ya go.
Nothing like a Bloody Mary and mashed potatoes for dinner to put me in a blogging mood.
It’s been a banner week for Neuroblastoma. Celebs are Tweeting and re-tweeting about it and FB’ers are FB’ing about it. It’s very in. Meanwhile, real-live families are watching their children in various stages of intense treatment, or dying from this disease. Or maybe they’re sitting in a trance on their couch because they tweeted and FB’d and watched it and lived it and are still a bit numb. It’s not so glamorous on this end. For us, it’s always “in”.
But I’m glad it’s out there. I think. I’m not Glad, but, you know, whatever. Thanks Tom and Ryan, and Gaga, (or do you prefer Lady?) and Kim (ok, is she really a celeb?) Thanks for spreading the word. We’d really like your money too. You can make a HUUUGGGGEEEEE difference if you cough up a little cash. There are thousands of kids out there with cancer. Aprox 10,500 diagnosed just this year. Your beautiful Hollywood babies might get cancer too someday. You have the power to do something big. We all really should try harder for a cure. A cure that’s not at as horrid as the disease.
Ok, rant over.
Since you’re here, let’s take a look at the rest of the highlights from the RV journey. This is after leaving Florida and heading to New Orleans. I loved New Orleans. I’ve been there for Jazz and Heritage Fest, but didn’t know how family friendly it would be. Very! Go there. Take your kids. Stay here if you’re in an RV. Tres Cool!
Texas, you win for best sunset.
New Mexico, you’ll always be a favorite of mine.
New Orleans, Louisiana
9th Ward
San Antonio, Texas
Kerville
Carlsbad Caverns National Park
Roswell, New Mexico
“America, fuck, yeah!” Go see it. (America, not Team America, World Police)
So…
We’ve been back for 6 weeks and we are still searching for structure and stability. Because life moves fast, we had to jump out of the RV and in to school and work and whatever it is I do with my days.
Head down.
Just keep moving.
It’s good to be back. It’s hard to be back. Tuesday is gone. Her things are not gone.
Piper totes around twin dollies in a purse. Turns out all our dolls are twins. She only plays with them as twins. I’m glad she can heal thru play, but, oh, my heart.
Still one day at a time.
Piper and I went shopping last week.
She threw a penny in the fountain and wished for her back. I threw a penny in the fountain and wished it worked that way.
Layla Grace, Bethany, and Sydney are three little girls who are all in desperate need of prayer tonight. Three of thousands. Neuroblastoma. Tweet that.
I was just here earlier tonight…checking for you. I’ve missed you. Your honesty. Your open heart.
Jess, not a day goes by that you aren’t on my heart.
i so wish it worked like that too. I’d throw hundreds of pennies in a fountain if it did .
Saying prayers right now for Layla Grace, bethany & Sydney. That the Lord answers their prayers and heals their bodies.
Love you.
Oh, my heart… I would throw all that I have to have her back with you…. I so wish it worked that way. Why doesn’t it work that way? Although I’ve missed your words and thing about you all the time, seeing a new post brings a lump in my throat and tears in my eyes Because I imagine that you come here, to your blog, sad… This is where it all is, you know… And it is a feeling I have a hard time discribing, knowing another mama is missing/longing for her baby… I still find it hard to understand why your baby is gone.
I am glad to hear these celebrities noticing NB. Its about damn time! And I hope that they put their money to good use. I will be honest, I have a hard time reading about children with cancer now… Tuesday has left her mark on me so hard. I have grieved for your little girl so much that I am scared to read the loss of another child… It has torn me up. Every child I have followed has now gone… I can’t stand it… I will Pray for Layla… for Bethany… and for Sydney… Pray for a cure, pray for a miracle…
Sam
I agree with Debi and Sam. I miss your writing. Your posts never fail to move me. Most of the time I end up with tears streaming down my face and a longing in my heart. I didn’t know Tuesday.But I have 3 of my own. The thought of losing one of them…even the thought of another parent losing or having lost a child. Almost too much to bear. It doesn’t seem right that things like this happen to innocent babies. And it can happen to anyone. And you make it real. You put it out there. And I thank you for that. I hope some of those celebrities do pitch in money. Because you’re right. It could happen to their children too. Any of our children. I wish I felt more powerful and felt like I could do something to help. All I can do is pray.
Oh how I wished it worked like that as well! Hugs to you all!
Wishing it worked that way as well. Love and prayers for you, yours, and the others you mentioned. Miss you.
thank you for the update and pics Jess, you are all still in my prayers
Hugs!
I’ve been thinking about and praying for you guys lots this week.
Hugs to you, c, p, a, and s too.
Awesome pictures Jess! I love the Roswell ones. The look on P’s face looking at the alien is classic.
And… Cancer sucks.
i’ll be tossing every penny i have in that fountain…wishing for a cure…wishing for peace for you…..wishing for peace for all those suffering through this awful disease…..
glad your back…
hang in there.
-colleen
glad you are back. but not glad, you know? just missed you and thought that it was so quiet here.
if i had the money i would throw it, the thousands i wish i had and the pennies i wished on. love you. a
(um, the alien in the gurney. too weird, jess. but i love that the kid looks transfixed.)
I miss you, JK.
I don’t know how to explain it….I love hearing from you….hearing your words…..but I also know to prepare myself to be moved….touched….shaken. Whether it be by Piper playing with her twin dollies, wanting to chuck a million pennies to get Tuesday back, the picture of the sunset, or craving mashed potatoes and a bloody mary for the first time in my life. I’m rambling andmake no sense, but hopefully you get me….that’s all that matters. Also, you made my day when I received your comment on my blog……thank you so much for visiting me in cyber land. I really hope one day we will be able to all laugh together again. Love you!
I so would throw all that I own in a fountain to get her back! I have missed your posts and knowing that you are ‘ok’, not ‘ok’, whatever you are. I guess I feel the most guilt now because my Joey is a survivor, he beat NB. But that is so not fair to all those who won’t and didn’t. I hate that I am happy and you are so sad.
I think of you everyday Jess, I know that it is not enough. I so wished we could have seen you when you were in NJ!
HUGS!
I send prayers up everyday for those who are fighting!
I hope with all my heart that Piper’s wish comes true. I would dump every damn red cent I had into a fountain if I knew it would work.
I agree- everyone go see America. It rocks.
California is aching for your my dear friend. Love you so much!
Jess – Beautiful photography…I wish pennies worked too:(
I’ll throw all of mine in the next fountain I see….
xxx ooo
Nice to hear your voice again. Missed you and wished there was something I could do to make it hurt a little less. I promise when you come visit, I’ll make mashed potatoes and Baileys on the rock. How’s that for a start?
Tuesday – it can be just a day… but to all of us, that knew her, it means so much more!!! She was beautiful, happy, energetic, healthy, vibrant, young, perfect, sweet, funny, and did I mention her curls (oh yeeaah)!! and then some….
Tuesday, it is our day to remember ALL thing important, thanks to her!!
Hope your heart continues to heal Jess. And we are happy you have shared your words (& beautiful photos) again. We missed it!
I love you. All of you!…Charley, Jess, Spencer, Axel, & Piper
XOXO
As always, beautiful post. Much love to you and yours. Never far from my thoughts — all of you.
Know that you’re always in my thoughts and prayers!
Psalm 32:6-8 For this shall every one that is godly pray unto thee in a time when thou mayest be found : surely in the floods of great waters they shall not come nigh unto him. Thou art my hiding place; thou shalt preserve me from trouble; thou shalt compass me about with songs of deliverance. Selah. I will instruct thee and teach thee in the way which thou shalt go : I will guide thee with mine eye.
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Thanks for sharing your pics!
We’re praying for peace for your family.
Cancer sucks!
We pray hard for everyone with cancer around here.
Layla Grace is one beautiful strong little girl-who lives close by our house. She is such an amazing little girl!
Did i mention..cancer sucks!
Hugs and prayers for your family..and every family that has to ever hear the word “cancer”!
The Myers Family!
Know that the Lord is always with you, wrapping His loving arms around you and holding on tight!
Psalms 18:2-6 The LORD is my rock, and my fortress, and my deliverer; my God, my strength, in whom I will trust; my buckler, and the horn of my salvation, and my high tower. I will call upon the LORD, who is worthy to be praised: so shall I be saved from mine enemies. The sorrows of death compassed me, and the floods of ungodly men made me afraid. The sorrows of hell compassed me about: the snares of death prevented me. In my distress I called upon the LORD, and cried unto my God: he heard my voice out of his temple, and my cry came before him, even into his ears.
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Still here lifting up prayers!
Psalms 18:30-32 As for God, his way is perfect: the word of the LORD is tried: he is a buckler to all those that trust in him. For who is God save the LORD? or who is a rock save our God? It is God that girdeth me with strength, and maketh my way perfect.
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Praying!
Isaiah 26:3-4 Thou wilt keep him in perfect peace, whose mind is stayed on thee: because he trusteth in thee. Trust ye in the LORD for ever: for in the LORD JEHOVAH is everlasting strength.
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Praying for Layla Grace the last few days and thinking of your family the whole time. What you went through and are going through. I’m reading ‘The Good and Beautiful God’ by James Smith. It’s about going through stuff while still realizing that God is good, he is still trustworthy, he is still generous with his mercy. We don’t know why things happen in this life. They just do.
Augustine of Hippo said this in the 4th century:
“We do not know why God’s judgment makes a good man poor, and a wicked man rich… Nor why the wicked man enjoys the best of health, whilst the man of religion wastes away in illness… Even then it is not consistent… Good men also have good fortune and evil men find evil fortunes… we do not know by what judgment these things are carried out or permitted by God, in whom is the highest virtue and the highest wisdom and the highest justice, and in whom there is no weakness nor rashness nor unfairness.”
Here’s what we DO know. God promises that those who love and serve, and are honest and faithful, will know a kind of JOY and PEACE that those who are evil never will. What a merciful gift.
Hope these words bring you comfort! Praying!
Isaiah 12:2-3 Behold, God is my salvation; I will trust, and not be afraid: for the LORD JEHOVAH is my strength and my song; he also is become my salvation. Therefore with joy shall ye draw water out of the wells of salvation.
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Hey Jess…
I love all the pictures from your trip. I got a nice laugh when I saw the photo of the lady in the fur coat and mud boots at the pay phone in New Orleans. I am not sure if that was what you were going for, but I could see myself saying “Oh man, I gotta get this lady in the shot!”
Beautiful photos of all the fun places you and your family got to see. This is something they will cherish forever and ever and ever.
How is it being back in Colorado? I miss those mountains already. Wisconsin is actually warming up. I think I might be able to se my lawn the next time we visit the home we are buying! Makes me wonder if my friends in CO can see their lawns yet, lol
I pray that those who are blessed financially will spread awareness about this awful disease and that they dig into their pocketbooks and get all their friends on board to help find and fund a cure. It is very difficult for me to visit these sites you mentioned, I really feel like we all lost little Tuesday and looking at more babies who could die from this terrible cancer, it just breaks me. I will pray for these and all children who are affected by this and pray that awareness continues whether it is “in” or not.
Plunking my coins into that fountain too. If only…know that one day your wishes will all come true. Right now, this time…it will only seem like a blip in time when you have forever.
Many hugs and prayers.
Jess,
My heart shatters thinking about the thousands of kids. When I think of Tuesday during the day I look at the boys and just want to smother them with more hugs, more kisses, just more. Cancer sux and I hate that any family has to face it. It is good to hear that Piper is using play to heal, and it is good to know that even if your heart is breaking you have kept the twin dolls for her to heal in her own way. I wish there was a majic fountain where we could toss in pennies and wish for all the lost babies to be back in their momma’s arms. For now though, until that fountain is discovered, know we are all praying for peace and continued strength for you and Charley and the kids. Hugs darlin’.
I have been hearing about Layla Grace through a friend here who knows her mom. And thinking of Tuesday. And praying. The blogoverse in an amazing force and I am thankful for people like you and Shanna who are using it to fight cancer.
Layla Grace, Sydney, and Bethany – you mentioned all 3 of them, and they are all with Tuesday now. Such heartache. Indescribeable loss. Peace.
Im so sorry about Tuesday, I love reading your honest words in your blog. You and your family our in our prayers! I hope a cure for this horrible disease is found. I’m actually from Layla Grace’s home town and plan on volunteering for a fundraiser they’re doing soon!