Sometimes in the face of unspeakably hard news it is hard to get out of bed. I don’t mean this in the way you’re imagining. It’s not that Ryan and I are so depressed that we have no motivation to start the day. It is just a feeling that while we are still awake, laying in our bed, talking, cuddling, and laughing, time is frozen. The morning after you are told your son has a new tumor and cancer has not been defeated yet in his body, there is an overwhelming feeling that the moment your foot hits the floor it all becomes real. Decisions will have to be made. Prescriptions will have to be filled. Favors will have to be asked.

So we linger in bed together. Forgetting the world. But then Isaac comes in and asks when we will get up. We tell him we are sleepy heads. We sing a very silly song I make up about being sleepy heads and laying in our beds. We grab him and tickle him and pull him into bed with us, telling him he should just be a sleepy head too. He laughs and wriggles out of our bed, for him there is too much potential fun to be had for him to lay in bed with us. We linger. We speak our private language of hope to each other: Dreaming out loud the audacious dreams of those with nothing left to lose. We imagine every miracle God can perform for Joel and wonder aloud when we will see His next strike against the enemy of Joel’s life.

Caleb comes in, a little melancholy. He asks slowly and quietly when we will get up. We explain that we are sleepy heads. He says, “But, you’re kind of already awake.” We sing our silly song in explanation, he chuckles half heartedly and tears well up in his eyes. My contacts are still out so I can’t tell for sure but it seems like something is wrong. I ask him, and he tells me it’s just his eyes are watering. I don’t believe him. We wait a minute and then it is obvious Caleb is crying. Ryan tells him, “Don’t hold it in, talk to us.” Our whole family is raw and tender right now, and seeing a seven year old who is precious and frighteningly fragile trying so hard to be tough is heartbreaking. Caleb hears our desire to be present with him and again slowly and quietly he starts, “I just really want to play…” “With your friends?” Ryan finishes for him, knowing that Caleb never likes waiting for us to get up so he can go outside to play. “No, I was wondering if we could play with you. Like, maybe a boardgame.” “Yes of course, we would love to play with you. How about you give us twenty minutes and then we’ll come down and we can play.” “Ok” he says and bounds off with an energy I’m not sure I will ever be able to match today.
We savor our last few moments before the world begins. Reminiscing together about the little parts of the past day that we truly loved despite what we are now facing together. It is not long, the time passes quickly, but it is enough. Isaac comes back in our room and says. “Mom, it’s been twenty minutes.” “Did Caleb set a timer?” “Yep. He said to tell you.” “Alright,” we agree, laughing despite ourselves at our literal son who holds us at our word. As I sit up, Caleb is rummaging through my bedside stand, and hands me my contact case and solution.
And it is wonderful, because in a house with four boys life continues, and drags you back into joy no matter how heavy your heart is: despite the weight of your responsibilities, you will get up and you will play.
Nothing is really different today. Just like our doctor encouraged us, Joel is the same kid today as he was yesterday morning. Only, today, we notice every subtle wince that mars his face. I find time to sit and write all of this, with tears pouring down my face. Caleb, Isaac, and Ryan play lego rockband, I am exempt because there are only two guitars and a microphone and they would all rather play themselves than take a turn off. Before I can quite finish Joel and Elijah crawl up onto the couch, climbing on me, kissing me, laughing. Joel keeps pushing a pacifier into my mouth, and he thinks it is so funny, that I try not to really acknowledge that it must have come from under the couch because no one has used a pacifier in our home in over a year. But mommys do all kinds of gross things for their kids so I clench down on the pacifier with my teeth and shake it back and forth ferociously as they giggle, climbing on me, and pulling it from my mouth. Elijah puts it in his, Joel pulls it out of his mouth and returns it to mine, and it really is disgusting, but I would do anything to keep hearing his sorrow-shattering giggle. They kiss me, they kiss each other, they climb on top of each other and me, and I continue to type, and I continue to cry my giant silent tears, and I realize that these two are not fragile. They don’t mind my tears, they cuddle and love and play and make merry, and I can mourn everything I know this tumor costs my family in a natural way, not secluded from love but surrounded by it.


There are 3 comments for this post.

  1. Serena Tyrrell on December 1, 2012 4:57 pm

    I have no words. I just want to thank you for writing and sharing. Loved the pacifier story– anything for those laughs from Joel!! We love you guys.

  2. dc mama on December 1, 2012 11:14 pm

    so beautiful and so heartbreaking. keeping you in my thoughts and prayers, as always.

  3. Marla Worley on December 4, 2012 11:30 pm

    Oh beloved ones, thank you for sharing your sleepy head song family time. I can only imagine how BIG our God’s smile is in this moment. You are living out an abundant life in Christ despite what our enemy throws at you. I bless you to continue to take the next step out of bed by faith.

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