Sunday, June 20, 2010

Sprinkling in magic.

Taken from my favorite poet, Jack Ridl:

"You know elves
live under your porch, that God loves
puppets, that the wind comes from a witch's
cave, and birds sing just to sing."
(excerpt from "Rainbow")

After the night of excruciating pain, Gideon woke up with an empty and hollow look in his eyes. I stared back at him and practically BEGGED for even the chemically altered/alter-ego Gideon to appear. Sure he can be scary mean, but I would rather have some spunk than emptiness. This version of Gideon was too much for my heart to take. Something had to be done about this Herculean amount of pain this itty-bitty body has had to endure.

And it was. We went for a CT Scan, and the turning point of our day occurred then. It was what I call a firecracker versus firework moment. The cannon releases the explosion into the sky, everyone knows something is coming, and we all brace ourselves for a thunderous explosion. There is instant relief to see a colorful burst of sparks instead of the jump-out-of-your-skin blast. OOoooo-ing and Ahhh-ing is a must. I'd say the CT Scan was a firework moment.

I told Gideon that we were on a mission. We were going to the Space Station part of the hospital and that he was going to be an astronaut. He would have to go through a hole and be scanned with red dots. There would be rocket launchers making noises all around him and spinning, but his mission was to STAY STILL. If he didn't stay still, he would have to be sedated (I didn't tell him that part, of course). We put on his Space Suit and strapped him in for blast-off. That was when the vacant expression transitioned into one of sparkling joy. His multifaceted baby blues showed their depths, once again. The process went flawlessly, and as we pulled him away in his wagon to go back to his room, he begged us for another ride! He was on FIRE for something. I said that we had to go back to our room because all astronauts get something special once a mission is accomplished. After finding the Child Life Team in the Children's Hospital, we begged for something spacey to commemorate the occasion. They came up with "Space Buddies" to watch and planet/star cling-ons for our walls. Once I decorated, Gideon laid on his pillow (still drained and sleepy) with his cloth over his head, but he was SMILING! Oh, the victory of a smile today made my heart leap back to my chest instead of constantly beginning slapped by my flip-flops!

The CT Scan came back clear, and I am thankful for that. We still don't have answers, but at least more bad news did not come our way. Gideon will have an MRi tomorrow, and hopefully we will know more. For now, we are treating Gideon's pain as if they are migraines. Migraine medication will be given throughout the night, so he'll need to be woken up for that. I'll deal with a grump monster who just wants to sleep. That's fine. As long as the main emotion is grumpiness and not pain, BRING it!

Let's also bring on the binge eating I have been hearing happens at this stage of the chemo! (I'm sure I'll look back at that sentence in the near future and roll my eyes at my naiveté, but this is how I feel at this moment. I'm a MOMENT girl, remember, self? And I am talking to my future self. Must end the So far, Gideon has been sinking into his skin even further and bones are beginning to be more pronounced. The Polish mama in me wants to FATTEN that boy up! As my baby sister Annie can attest (she witnessed this while she was here today), Gideon just groans and clamps onto his jaw with his little fingers whenever he has to bite into anything! This is one of those heart burst moments. Eating pains him. Something he NEEDS to do for survival hurts. Not fair, Leukemia. So, I begged Annie to go down to the Food Court to buy those all natural Omega-3 smoothies, "Odwalla." She came back with three, the sweetie. Magic worked for the CT Scan, I was going to make it work with getting nutrients in that little body.

I told Gideon that I was going to make him a Magic Potion. "When you drink it, Gideon, it will feel like swirls of magic dancing on your tongue. Then it will go down to your belly and tickle you there. Then, WHOOSH! It'll fight sharks that are making it hard to eat. Do you want to taste magic?"

His eyes got big and he whispered, "Yes!"

So, I poured the smoothie into a styrofoam cup and said these words as I sprinkled the magic inside with my other hand, "SMOOTHIE-WOOTHIE! Go down SMOOTHLY... Make the magic work!"

Gideon drank almost the entire bottle. It was magical. Let's add a layer to our miracle sandwich: He sat in his bed with the cloths on his head and talked to us. He chatted up a storm! Auntie Marianne, Uncle Greg, and grandma came and the kid cracked us up with his sweet banter and gestures with his hands (WHO do we know who talks with her hands?). I would watch that performance above all other concerts offered me.

He fell asleep at 7:30. This is a great thing since he'll have to wake up periodically for those meds. Pray that we ONLY wake up for meds and not for pain.


  1. Amanda, You have opened a door for all who read your blog into this turmoil you are all living...yet you make it wondrous to read. You have a wonderful gift of making difficult procedures seem like an adventure for Gideon, and we all get to ride along. Thank you! The Euchre Group are all praying for you and your family. We can see some of our prayers answered in your words of hope and praise. I hope tonight brings you and Gideon some much needed rest.

  2. Sweetheart, you are a FANTASTIC mother! That magic with the shake... FIRST RATE!! We all have to reach into the "Mom Bag O'Tricks" on occasion, but you've raised that to an art form. I am in awe of your Mad Skillz!

    I am praying right now for your sweet baby to have a peaceful night with the exception of taking the medicine. I was with you in spirit this afternoon for the CT scan... we are all hoping as hard as we can that your adorable little guy gets some relief SOON!
    Much love & hopes & prayer,
    ~~Aunt Nancy~~

  3. I know it's hard to watch your child get thin, but children are amazing, and when the treatment is over the weight will come back on so easily. I had watch my 12 year old be fed only intraveinously for 2 months. He got scary thin, but 3 months after his hospital release he looked so amazingly healthy again you wouldn't have known he was ever sick. Hang in there. Love and Prayers. ~Linda Parker~

  4. You are an amazing mother. Still praying...

  5. Hey girl,
    You and Gideon are constantly on my mind and in my prayers. Thank God for all that teacher creativity you have that helps Gideon get through these tough times(eating,CT scans,etc). You are my SuperMom!!
    Peace, Sandra

  6. God is obviously giving you and amazing ability to think on your feet, to stay energized, clear and He is filling you with HIS strength. May your night be filled with sleep, sweet thoughts and no pain! Your in our constant thoughts and prayers.
    Matt and Gena Gilligan

  7. God has given you an amazing gift of imagination! It infuses your readers' hearts with compassion and your son's battered body with courage. How you can be so creative with so much stress pressing on your aching heart and so many thoughts whirling in your tired brain has to be God's creative power at work to heal and restore.

    Now here's something for you, Amanda, for nothing soothes the aching heart or stills the whirling brain like words straight from the mouth of God:

    "May the Lord answer you in the day of trouble!/May the name of the God of Jacob set you securely on high!/May He send you help from the sanctuary,/And support you from Zion...May he grant you your heart's desire,/And fulfill all your counsel!/We will sing for joy over your victory,/And in the name of our God we will set up our banners./May the Lord fulfill all your petitions"(Psalm 20:1-2;4-5)!

    When my son had to endure twenty-three surgies in the span of a few months time, God sent me these words of encouragement from David in Psalm 27:

    "I would have despaired unless I had believed that I would see the goodness of the Lord/In the land of the living./Wait for the Lord;/Be strong, and let your heart take courage;/yes, wait for the Lord."

    My love to you in the fellowship of suffering, Colleen Averill

  8. Amanda & Tom, Kristi told me about Gideon when she first heard and I've held him and your whole family in my prayers since. Thank you for sharing by having this blog. I'm sincerely offering my help in any way. I'm a really good "grandma"/mom and would be happy to help in any way - babysit, meals, cleaning, hospital visits, errands, you name it. This isn't an empty offer, you know I've been through my own trials, but nothing like this so please take me seriously. Call me - Tom has my contact information and so does Kristi. I'm close and standing by. An extra set of hands and a open heart. God puts all here for a reason and helping one another, especially in times like this is what he calls on me to do best. Love to you all - Mary Bell (Kristi Mixer's Mom)

  9. Amanda,
    Want you to know that I'm constantly thinking about you & praying for Gideon. You are just what Gideon needs- not only a loving & supportive mom, but a hospital fun captain. I've always loved that about you- no matter what the situation you have the ability to look on the bright side. It truly is a gift and one that your children benefit greatly from. A space station, rocket launchers, swirls of magic dancing on your tongue? Where do you come up with this stuff? I have always wondered :) You're the BEST! I'm just a phone call away and can be by your side in an hour, so please do not think twice about calling. I'll even bring you paint samples for the boys new rooms- I know your color line :) Love you lots! Give my love to Tom & the boys too.
    "In the face of such uncertainty believe in these two things –
    You are stronger than you think
    and you are not alone.”
    Maya Angelou

  10. Amanda... Gideon is wrapped around my heart and you are amazing. I have three boys - young men really - one who is going through some tough things. I may try a magic elixir tonight on him if you think it will work for a 20 year old. ;) Abundant grace and peace to you and yours. Praying.