Sunday, December 1, 2013

Fighting

Every moment is a fight.
A fight in the epic battle inside of Sam's body.
A fight in our epic battle to hold ourselves, our children, our family together.
A fight in our epic battle to maintain control…of whatever we can control.
Platelets and a few other tune-up meds - just a visit, not an overnight stay
It was a conversation about horrible things. Do not resuscitate orders and end of life care.
We're going to be traveling out of the state. 
"I can't be in control at another hospital," the doctor explained to me. He can talk and explain, he can use his connections and his stature to convince an out-of-town doctor of our wishes. But he doesn't have control there.

I replayed the conversation later in my mind and I found myself laughing somewhat uncontrollably.

Control.

As if any of us have it.

Are we keeping the leukemia from growing out of control? 
At the moment, yes. We are keeping it quiet. It is unchanged from a few days ago…so we think. So what can we control: How do the medicines make Sam feel? What is the minimal dose we can give him to keep him comfortable, happy, and also awake and content? Which poison will hurt only the leukemia and keep his other stuff working just right? When will it rear its ugly head and run us over? 

It's like a boxing match -- what's the famous phrase? Float like a butterfly and sting like a bee….

A few jabs over here from a chemo pill.
The body sends back a nap and a vomit.
A few jabs over there from a steroid.
The body sends back a rash and a pain.

It's a different game. The rules have changed. The goals have changed.
We don't talk about long-term effects of medicines. 
We talk about today, about tomorrow, about planning for a few minutes at the House of Mouse.

There is no long-term.

And yet….we're not done.
It's not over.
We don't plan for death, we don't welcome it. 
We don't talk about it each and every moment.

But I catch my breath when I see him playing charades with his sibs and cousins and wonder when it will happen again.

I suppress my pain when he tells me to "leave me alone." Oh, Sam...

I drop everything when he asks me to sit with him and read. Until I'm hoarse if he wants.

And yet…we're not done.
We still ask him to say please and thank you. 
We aren't done parenting him yet.

We aren't done trying to find the magic, the wonder, the light.

"I am not going to be happy any more," he told me. 

"It's okay to have fun," I told him. "Even if you're sad inside, it's okay to also have fun and smile and be….even if you're super sad and angry and upset on the inside. You're allowed."

Fireworks lit up the sky last night. Sam was physically uncomfortable and feeling fragile, even though he was only surrounded by his inner circle. But the lights lit up the sky and he watched…transfixed. For a few moments transported away. And for the rest of us? They lit up our souls. I will never see fireworks again without thinking of this night, when our community came together to illuminate the love for a little boy and his family…thank you. 

Fireworks….on the fourth of July they remind us of the "rockets' red glare" that helped forge our nation, of the epic battles that were fought for freedom.
Fireworks…now they will forever remind me of the spark that is our Sam...
Watching fireworks…Chanukah candles burning behind him



Not a day goes by that we don't hear about another treatment.
Another drug.
Another place with an incredible story.
Believe us when we say that we have left no stone unturned. We have tried them all.
We fight now for comfort and time.

We fight for more of this...

23 comments:

  1. “There are moments in life when it is all turned inside out--what is real becomes unreal, what is unreal becomes tangible, and all your levelheaded efforts to keep a tight ontological control are rendered silly and indulgent.”
    ― Aleksandar Hemon, The Lazarus Project

    Sending much love across the miles.

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  2. As always, sending as much love as can flow through the internet.

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  3. Superman never gives up a fight, keep on fighting pumpkin, lets show this Leukemia whose the boss. God is more than able. XOXO

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  4. I don't know if I posted this already, but I think Superman Sam has superhuman parents. How awesome you are, and how loved your children are! I'm a new mom and you are great role models - even facing something so scary, you make your family a united team. Incredible. Wishing you comfort and time. Happy "Thanksgivukkah"!

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  5. Sending love and light and comfort your way.

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  6. It has been my experience that we have the ability to heal from anything until we breathe our final breath in our respective journeys... it is an expression of love that is available to all from our Creator... I have spent over 20 years assisting people in experiencing healing, and it would be an honor- and my pleasure- to share such an experience with Sam and your family. I live in the area, and I invite you to send an e-mail to me at the link on my website at www.aspiritedplace.com. Blessings and peace to all this day, Erik

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  7. Though I don't know Sam or you, his dear parents, I have followed his story through my friend Rabbi Josh Caruso. Would that God give us all the strength to travel your path...and then not need to. But though you did not chose this path, it seems that your strength is Sam's strength and his yours. May G-d continue to give you strength and may you draw strength from friends. Though I am a stranger I cannot be a passer-by. I wish G-d's blessing on all of you. Paul Levin, Shaker Heights, OH

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  8. I also don't know you or your son, but am touched by your eloquence during such suffering. Sending you rays of light in much darkness.
    Ellen Goldman

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  9. "We aren't done trying to find the magic, the wonder, the light." Thank you and blessings. Many many years ago, we lost my brother to illness and I thank you for putting into words so much my parents could not. Blessings on the love that fills you along with everything else.

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  10. Through our daughter Emily, (one of your Make a Wish Grantors) we feel as if we know you Sam and your family. We saw through our trees and heard fireworks last night and quickly found out that they were for you, too! The past few weeks Emily has told me about the really cool plans being arranged especially for you Sam and your family on your animal kingdom adventure. Have a great time Sam, hope you feel better and enjoy the magic.

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  11. I wish I could send you more strength, hugs, an extra deep breath. Many of us are following along and praying for your family and Sam.

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  12. you are the most wonderful family. My prayers and love is with you,

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  13. I am praying for Sam, his family and that circle of close friends that support you! Praying for God Best and the slowing of time.

    Blessings,
    A Total Stranger near Chicago

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  14. Tears and hugs.
    I'm praying for all of you.
    Batya, in the Holy City of Shiloh

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  15. This evening a group of women in my neighborhood got together to pray for a friend who is in critical condition in the ICU. We said tehillim and included others in need of a refuah - we all davened for Sam. He is constantly in our prayers, as is your entire family.

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  16. I actually smiled when I read: "And for the rest of us? They lit up our souls." A beautiful, honest post as always. Because you know what? The experiences you all are having with Sam are just as important as the experiences you're trying to give him. I am grateful that you all received a blessing in that moment. We're continuing to pray for all of you.

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  17. sam is in our daily tefillot and tehillim. wishing you days that are pain free, and filled with song and laughter from your family.

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  18. Speaking of shower curtains, I am "hanging" on your every word! Amy Ariel introduced me to Sam on her blog, and I tried to comment to tell you how much I am trying to be for you all whatever you need most, prayers, smiles, tears, encouragement, patience, anything at all, especially love. What a season to be going through all this! The "season of lights," Thanksgiving, Hanukkah, Christmas, whatever, assures us that the Dark does not have the last word. Sam, you shine even in your fears. Flowers for everyone!

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  19. I don't know you. I don't have to. Everyday I am overcome with emotion by the tsuris, sadness, pain and harsh reality that you, Sam and your family are facing. Every day I am also completely in awe of the courage, strenth, grace and eloquence that you have so openly demonstrated and shared.
    You are a super hero in your own right!
    I hope you are able to find peace, love, a few smiles and some serenity in these most difficult of days. An entire community is loving you.

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  20. In one of the hardest times that ever was, Rabbi Phyllis Sommer once said, "It's okay to have fun," I told him. "Even if you're sad inside, it's okay to also have fun and smile and be….even if you're super sad and angry and upset on the inside. You're allowed."

    I think I'll write that in on a page of text somewhere. Some page of Torah. Some page of Talmud.

    Each of you is so much more powerful than the entire Justice League combined.

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  21. I read the blog and it touches my heart and I cried... May his soul rest in perfect peace..

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