Sunday, December 5, 2010

The stars may not be visible, but they are there!

I sometimes daydream that Will Smith will show up at my doorstep in a black suit, Wayfarers covering his eyes, and say, "Look into the light!" Then ZAP! My memory is erased so I just decide to drive to a beach and lay there. Letting the sun soak in and my mind relax, I fall asleep on the sand with the lulling waves as my only distraction. I miss that carefree la-la-la attitude I remember like an old friend I can't find -- not even on Facebook. The capability to silence my brain completely and to feel that holy peace of stillness is difficult these days.

It hit me the other day when I was going to the grocery store. I remember walking into that place not long ago and thinking, "I could pick anything! ANYTHING to make for dinner tonight... OooOOoo. Food adventure!" and then I'd peruse the veggies and fruit and just allow the sensory overload of all of their fun colors and delightful smells rush over me. The soundtrack was a continuous whistling in my head, and lightheartedness was commonplace for me. It was so easy to smile at strangers.

This last time I visited the grocery store, I had to get soft pretzels (the only thing Gideon is eating right now) and I was on a mission girl. Even though it's still the same festive place and I'm by no means gloom-and-doom, there is still a lodged rock in my soul that will not budge. It's not a Grinch rock that makes me glare and feel angry, it's just a heavy weight that keeps my normally helium-filled heart grounded in the reality of it all. Even when I don't acknowledge it, it is still there. I think it's name is "cancer," this boulder.

I didn't want to stay away too long incase Gideon needed me or got into one of his moods. (Did you know that lack of blood causes one to get very moody? I had no clue. Now I do.) As I waited impatiently in line, I really despised the way the cashier kept wiping her nose with her HAND. That's right: I got out of that line (even though I had less than 5 items) and went into the long one full of people stocking up for the week because of Booger Girl. Then, when I got into my car, I used sanitizing wipes on every article I bought. Yes. Carefree. Will she ever come back to me?

Also not too long ago, I adored giving my boys a bath. We rigged up a little basketball hoop and played "DRAIN IT!" I know! That pun-a-rrific name fits well for bathtub b-ball, huh? The winner got to pick who was to be washed first. Now I make the boys take separate baths since Gideon's numbers are low in fighting infection of any kind. I'm not risking anything.

Last night, I put Gideon's bony body into the water. He gets cold easily these days, so I had the heater cooking in there and my mask still secure over my mouth. I noticed more bruises on him (a sign of low platelets), and his eyes seemed more sunken in to me. I blamed the lighting and the fact that my bathroom is Kermit green. That'll make anyone look sickly, right? But, still. He was bruised and a walking skeleton. I was feeling that weighty feeling more than ever. Then, that sweet child nudged the boulder out of the way and I felt a burst of my balloon heart again. Since he could talk, Gideon has asked the same question the moment he was placed in the bath. He said it again last night, "Mommy... I don't want you to wash my hair, okay?" This time once the familiar words escaped, he started laughing. I could see his ribcage practically guffaw right out of his body with every shake of hysteria. Once he caught his breath he said, "Oh! Well. I guess I HAVE no hair. Neverrrrrrrrrrrmind." Oh. Thank you, weightlessness of the sillies. Maybe you had to be there to experience the beauty of this moment, or maybe it was such a fantastic moment due to the sadness I felt right before it happened. Perspective does that. Gideon makes fun of his cancer without even realizing it, and it just....helps. It helps us all.

That's one thing about being a mom of a child with cancer: things are either horrendous or serenely perfect and beautiful. I have experienced no middle ground in this new world. I think the horror of cancer makes the smallest moments that much more blissful. Normal isn't normal -- it's heaven. I have also experienced, as you can tell by this blog, the pinnacle of humanity and the giving human spirit that surrounds us more than we know. Why is it so obvious when horror strikes? Why does it take disaster to expose beauty? I see it everywhere now. No, I may not always have a carefree spirit these days, but my newer balloon that appears is now made up of pure awe. Awe takes me higher than carefree, so I need to focus on the blessings behind the curse.

My heart is in complete awe with the way Gideon is responding to treatment and the blatant daily reminder that prayers are being answered. Please pray that the bugulators of the season stay away from our immunity-impaired boy! What you're doing is working, everyone. Thank you. I think I may always sign out with a thank you.

(Is it just me, or do I always talk myself out of gloominess once I blog? This outlet is magic, I tell you!)


  1. That little bald hero in this music video reminds me of Gideon. I'm assuming that was part of your reason for posting. I am still praying for you guys and we'll pray for Gideon's continued health! And it's okay to feel gloomy. I think people understand that human emotion inside. Allow yourself to feel it all, Amanda.

  2. For every parcel I stoop down to seize
    I lose some other off my arms and knees,
    And the whole pile is slipping, bottles, buns,
    Extremes too hard to comprehend at once.
    Yet nothing I should care to leave behind.
    With all I have to hold with hand and mind
    And heart, if need be, I will do my best.
    To keep their building balanced at my breast.
    I crouch down to prevent them as they fall;
    Then sit down in the middle of them all.
    I had to drop the armful in the road
    And try to stack them in a better load.

    "The Armful" by Robert Frost

  3. As a mom who is at home with my little boy who also has leukemia, I say u nailed that "boulder" description perfectly. Weird how small normalcies have changed now. I found myself nodding and feeling like I am understood and we have never met. Your blog has been more supportive than any book on the subject I have ever found. You are not strange or complaining. You are real and are a voice for all of us cancer moms without even trying. Publishing this blog one day is a necessity. I have never felt so understood and it is the most comforting emotion.

  4. Thinking of you Amanda. If I was near you right now, I'd swoop you and those boys and never let go - even if they whined and said, "who is this crazy chick, Mom?" Girl time soon, when it makes sense. You just let us know and we'll come take you out or do whatever you like. Love to our angel boys. xoxoxo

  5. I am sure that this journey is not easy for you, Amanda.

    A loving mother trying to do whatever it takes to see her son go through the torment of cancer treatments with a smile and sprinkles of hope and joy.

    God's amazing love for you and for Gideon is way deeper than the damage done by leukemia.

    His love for Brody and for Tom is way more real than leukemia.

    Indeed, the prayer of a righteous person is effective, and this is God's promise - we can join you and your heart's desire to trust him.

    In the love of Christ, the buds