Balloon heart.

This entire blog has been my honest and raw emotions, so I won't stop now.  Truthfully, I have logged onto this blog countless times since August.  Countless.  And each time I got to this winter white blog entry screen, I just stared at the blinking cursor.  Each blink of the cursor flashed a different emotion or a new memory or praise just begging to be recorded.  Gideon's sparkling eyes as he looked at me and said, "I don't have to take chemo tonight, do I?  My cancer is GONE," and then the memory-moment tinged with the smell of BBQ and saturated by so many people's love around us as Gideon let go of his green lantern at his NO MO' CHEMO party as he said, "I wish all cancer kids could beat their sharks" as it floated away; or the time big brother Brody said to Gideon in the backseat, "I was there next to you every time you woke up from your sleepy chemo, Gideon.  I was always happy when you opened your eyes."  How can I type with these images of gorgeousness burning holes through my soul and making my fingers useless and inadequate?   Feelings, thoughts, and emotions I wish I could cram into letters and words for you all to just take a hold of and know what it is I am feeling right now, have just seemed impossible to track down.

So, I will update you, but it will be impossible for me to fly you to the top of my balloon heart that is floating inside of a rainbow while nonstop fireworks erupt all around it.  (Ugh.  Still not even close to describing it.)

Gideon has been deemed CANCER-FREE.  He has been off of chemo for a month now, and I still have this itch at night to paw through his medicine kit and collect all of the pills.  It is so strange to kiss him at night and not count pills before that, strange in a FABULOUSLY strange way.  All he is taking now is Bactrim for his immunity now.  Our course of action is to now get blood checks every month to make sure those cancer-sharks stay away for good.

Today, Gideon had to go to the doctor to find out about a rash that won't go away.  It was with a REGULAR doctor at a REGULAR clinic, and I think I scared the doctor out of the door as she walked in and I exclaimed, "It is SO good to meet you!  Hi!  I'm Amanda," with a huge out-of-place smile on my face.  She was probably thinking, Lady, your kid has had an itchy rash on his body for three weeks.  What is your problem?  Why the goofy grin?  If she had only known what I really wanted do: hug her and plead for some kind of badge pinned on my shirt that said, "My kid went to the doctor because of allergies manifesting themselves on his skin.  I did NOT go to the doctor because my kid has cancer, because he DOESN'T!"  That would be a big pin to fit all of that.  I would wear it, though, and I would allow every stranger I pass to squint and read it.  Oh.  A doctor's appointment in a germy office full of crying kids, and I was in a new kind of heaven on earth.

Now we keep fighting for all of Gideon's friends so that they can also experience this joy of being cancer-free.  This month of CHILDHOOD CANCER AWARENESS has been overflowing with events and planning.  The kickball game I ran for the last two years is on again THIS year.  There have been so many amazing things planned, and this year it is being run by a fabulous group of high schoolers, my Dream Team.  I am excited to watch them pull it all off.  All of the proceeds this year will go to Cancer Families United, a local non-profit that services families in our area who are plagued with childhood cancer, all while advocating and fundraising research for a CURE.  I am on the board of this non-profit as the Vice President, and I am already seeing its influence spread throughout the community.  Wouldn't it be amazing if GOLD ribbons were as recognizable as pink?

So that I do not blab any further, I will leave you with these things YOU can do this month for childhood cancer awareness.  I hope to see you at Noodles and Company on October 2 and at the BIG kickball event (with a FREE Magic Show at 4:30) at Mattawan Schools on October 5.  If you would like to tune in, I will be on 106.5 tomorrow morning at 7:30, and I will be on WWMT channel 3 news on Monday, September 30 at 6:30 promoting our upcoming events.

I believe in miracles.  I have seen them firsthand.  I know that God has been with us and making Himself blatantly known to us several times throughout this journey.  I feel that He gives us all missions in life, and mine is and always will be to fight childhood cancer and help families who have been thrust into this cancer-world.  We have hands, minds, and pockets.  I pray we choose to use all three in a way that benefits the world.  Because others felt this was their mission as well, they funded the research NEEDED to save Gideon's life.  He was saved through others generosity.  Every little bit helps.

(Still to come: Gideon's No Mo' Chemo slideshow...)

 More No Mo' Chemo pics to come, but for now, one more video about Cancer Families United:

Click here for Cancer Families United video

HUGE day. HUGE.

Today I was transported back to the beginning of this journey. It was the day I went to Old Navy, only days into Gideon's diagnosis, and I couldn't help but to feel in awe of the regularity of the world around me as my own personal world felt as though shrapnel and shards were all that was left. People stopped at stop lights. People bought clothes. People even went through the drive-thru on their lunch hour. This time the tears that surfaced were the ones of awe as I realized what time and healing could butterfly out of the most disgusting of worms. I was at Barnes & Noble, searching for the best read of my life and I had to run to the restroom to sob. It instantaneously erupted inside of me somewhere in the M section of Literature & Fiction. Just a few stores down housed the Old Navy that felt like an abyss of emptiness and hollow wishes three and a half years ago. I honestly had no idea if Gideon would live or die, and my soul was on that same teeter-totter of fragility. Now, this Tuesday, July 23, Gideon received his very LAST hospital IV chemo dosage, and the beauty of that reality crashed down on me as book titles blurred into spirals of unfocused, soft, and silent fireworks through my tears.

LAST. And this last was jubilant. Brody and I stared as we witnessed the very last of the poisonous life-saver being pumped into Gideon's veins. Beautifully, his bag of chemo hung next to the clinic fish, all colorful and festive, as if he knew all along those fish-brothers of his would beat the sharks and he was just biding his time in the corner, waiting to be our banner of triumph at the end.

Gideon still has a month of oral chemo, ONE MONTH, but this week also marks the LAST WEEK OF STERIODS! He always responds so much better during this week of pain, discomfort, and emotional upheaval when he is in Grand Marais. Even though the boys and I just came back two days ago, we are turning around and heading north once again (this time with Alex, his family, Ann, and her girls) to soak in the healing air that resides north of the bridge: our paradise.

After chemo, I asked Gideon how he wanted to celebrate this last dosage of IV chemo. He responded, “I want to go see TURBO with you, Brody and Alex, and then I want us to go to Grand Marais.” So, we did see the movie, and we are going to our mecca of all that is gorgeous on this planet. Please pray for Gideon so that this trip truly is a healing one of peace and not one riddled with pain of any kind. It would be a gift from God if we can coast to the end of his chemo, August 18!

Mother's Day Wish

Happy Mother's Day (one day late)! This is always the day when it hits me the hardest, this being a mom thing. Not only do I sometimes wonder how my babies are so big, how I am not twenty anymore, and how come there is always just one chip/cracker/piece of cereal in the box, but I also wonder at the awe that is this fragile miracle of motherhood. It doesn't feel fragile sometimes. Sometimes the battle of will between parent and child can feel immovable and solid. These kids are so very vivacious and full of youth – what can be stronger?

But it is fragile. We don't know what a doctor will announce tomorrow at an exam. We don't know anything but right now. And my right now with Brody and Gideon on Mother's Day has been outstanding. There was a lot of cuddling, walking in the sunshine of St. Joe and pointing out flowering trees. I feel brighter with my babies, and I don't want to think what this day would be like if the right medication was not there to save Gideon's life -- the medication CureSearch brought into his precious life.

So, I almost missed the boat in asking for your help this year. It has been busier than the last three combined, I think. But, please consider walking with us this coming Saturday at the Portage Celery Flats for CureSearch for Children's Cancer. Just click here and register. In honor of every mom I know who heard that her baby has cancer, in honor of every fighter in our area, please join us. You will feel your heart swell with thankfulness and wonder at each child survivor who will be there on that day.  If there is no way you can attend, please consider donating whatever you can -- even a few dollars.  

Again, I apologize for waiting so long to get the invite out to all of you. Don't worry about fundraising, just sign up and come!  

Butterflies and Gerber Daisies

I am doing that kind of breathing when I hope that each little breath scoops up a particle of my broken heart and puts it back where it belongs. Tonight was incredibly hard. While Gideon was taking his chemo, we were excitably talking about how his sharks are being harpooned and how the good fish are strong inside of him (kind of like THE FORCE, and then we went off on a five minute tangent. We are both good at those side street conversations). Out of nowhere, Gideon asked, “Mommy, how is that girl from the clinic?” I began naming different girls being treated and describing them. He kept shaking his head and saying no. I could tell he was losing his patience with me as I diligently went through my mental list. He added this detail, “We sang together in the hallway and played instruments together. She loves butterflies. Remember?”

I did remember. When I named her, he nodded his head emphatically and said, “YEAH! How is she?”

Here is when I was at a moment's loss. I promised myself and Gideon that I would never lie to him about his cancer, about the treatments, not any part of this process. I want him to feel like he could always trust me. He knows that when I say it won't hurt, it won't. He knows to get brave when I tell him something will hurt. There is a strong trust there. But, the selfishness in me did not want to tell him the truth. I didn't want him to know. I wanted to guard his innocence. How could I protect him from this heartbreaking truth? What if her name was mentioned at the CureSearch Walk and he hears the news that way instead of from me?

So, I told him, “She is in heaven now, Gideon. She's in her real home.” Then as I saw Gideon's little lip jut out, and heard him try to talk but no words would come out, my breaking heart screamed out to God to keep my tears away, to keep me strong. As I leaned closer to his lips, barely a whisper was escaping. He kept repeating, “That's not fair. That's not fair. That's not fair.” And tears streamed at a steady rate down those empathetic cheeks of his. I agreed it wasn't fair and I scooped him up.

“Why, mommy?” he barely choked out. I told him that we are all on this temporary home for a little while. Once we have done what we were sent here to do, we go home. I told him that this precious girl got her job done very early and no one understands why or how, but we have to keep living and loving and remembering.

He then said, and this part makes me shake my head in wonderment and immense sadness, “It's also not fair because I have cancer but I am still on this earth, but she isn't. Why do some sharks beat the good fishies? She should still be on this earth with me.” It was as if he felt guilty that he is beating his cancer!  I told him that we all would rather have her on this earth, too, but we have to let her memory cause more love and light than anger.  I added that I knew for a fact that she wants Gideon to win against the sharks, too.

Gideon said, “Mommy, can we hatch butterflies this year for her (I am omitting her name because I am not sure her parents would be okay with it)? Can you find out what her favorite name was and we'll name the prettiest butterfly for her and watch it fly away to heaven?” I nodded.

He then said that she loved pink and that he thinks her favorite flower was the Gerber Daisy. I am not sure where he came up with that tidbit, maybe the flower reminds him of her, I don't know. He said he would plant those flowers just for her, and when they are tall enough and pretty enough, he'd cut them and would like to give them to her mommy. I told him we could do that...

I then laid down next to him, and he moved my hand so that it covered his heart. He said, “Could you just leave your hand right here, mommy? It hurts right there.” And that's when I let a few undetected tears fall. Whenever Gideon has a sore leg from treatment, he wants me to keep my hand on it because it makes it feel better. Somehow that physical pain is easier to deal with than this broken heart feeling he was experiencing.

Last week, in the car and on the way to school, Gideon said two beautiful things. I wrote down his words, and I think they make sense for me to add here as a post script.

Gideon: “Mommy, what color was invented first?”

Me: “I'm not sure, Gids. What do you think?”

Gideon: “I think it was either white or black.....Soooo, I think it was white since that is the color of light, and God is Light, and He was here first.”

Next conversation:
Gideon: “Sometimes when I look outside or I am just thinking about nothing at all, I feel God.”

Me: “What does that feel like?”

Gideon: “It feels like God is rubbing my back very, very lightly and then that feeling is everywhere. Then, it's like he tucks my heart in with the softest blanket.”

While I was holding Gideon's heart, I reminded him of those two fresh conversations, and an instant smile spread across his face. No matter how unfair, how horrendous, how heartbreaking it is to lose a child to cancer, Gideon knew he had to find the Light. He found it in butterflies and gerber daisies.  

Keep your perspective, little one.

Naive, Pollyanna, blindly optimistic... People will call you those things, Gideon.  They will look at your sparkling view of the world around you and peg you as simplistic because you don't let the darkness of life taint or discolor the rainbow reality you choose to live.  The truth as experienced through your mommy: They are sadly mistaken.  The negative veil that they have pulled over their eyes is nothing but a distraction from what you know matters.  They are the ones missing the truth while they smirk at positivity.

I have learned so much from you, my son.  Of all of the people I have ever encountered, you brushed with the scariest and darkest of places that even the pessimists fear: death.  As the scariest place of our human existence came closer and closer to you, you saw an angel of light instead of black bleakness of the end; thus, you know that the end isn't black, it's light.  That light can be felt, lived, experienced here and now.  We can bask in it and celebrate it as gifts from heaven.  And in that way, heaven can be felt right here and now.

So, here I am: a mommy who learned from her baby what it all should mean.  You are not lacking in wisdom, Gideon.  You have surpassed wisdom and cradle it in your heart on a daily basis.    How you view the world is how you respond to life.  You have chosen the light, so you respond to birds, colorful clouds and even band aids with a heavenly awe.  You have surpassed wisdom because you know it can not all be known, and learning sheds more light, not less.

While this awe causes you to smile, your eyes light up with questions as you delve deeper into the sound a black-capped chickadee makes compared to the cardinal.  You want to know why some turtle shells are soft and others hard.  And you ask the difficult questions, too.  WHY is there hate?  WHY do people think it's okay to be mean?  You live in the light while questioning the dark.  And as you see and experience moments of darkness, you reach deep inside to find a glimmer of light, no matter how small.

"He must be so sad, mommy," is what you said about a boy in a story we were reading.  He was a bully who wanted to demean others to feel more important.  As we read, you stopped me.  "He is so sad inside and so he wants everyone else to feel just as sad so that he isn't lonely on top of sad."  Then I had to stop reading just to look at you with the same awe in which you see God's creations in nature.

How did you get so wise?

I now know.  You are beating death and spreading more and more light because of it.  When I want to respond to injustice or negativity or angry people with my own dose of angry retorts, I remember not to feed the sadness or bitterness of others, but to respond with light.  You are teaching me that, and I still have a long way to go.

In so many ways, Brody and I are kindred spirits with you, Gideon.  We both feel the pull of your excitement and revel in the amazement you experience.  We all close our eyes when you do as we listen to "beautiful" music together.  Hoppipolla is a song we found together during the darkest part of your battle, and we all felt calmness and peace because of it as we whirled around the kitchen together to the beat.  Once I found out the meaning of the words, it pulled us all in even more.

Sigur Ros became a part of our battle soundtrack.  I was surprised by Alex when he took me to see Sigur Ros in concert this week.  You were with your daddy, brother and step-mommy-to-be on Spring Break vacation.  I have never felt so emotionally stirred during a live performance in my entire life.  As Sigur Ros sang and played his guitar with a violin bow, pictures of innocence and wonder and lights whirled around the stage.  And tears kept on falling, sometimes without me even noticing.  One song depicted a little boy swimming underwater with fish.  He was smiling while swimming, while sharing life with cold blooded creatures so unlike him, but with him at the same time.  I was surrounded by the wonder of it all, and I realized that when I do get to heaven, I will request my angels sound like Sigur Ros.  Also, I realized no matter how far apart we may be, the light is with us at the same time.  The Holy Spirit is good at that -- being everywhere all at once.  

I pray you always feel the Life in that Light, Gideon.  It is the only way to truly live in the moment, and the moments added together make for a life movie that centers around the goodness and beauty of it all.  Even though we are conscious of the dark, we won't let it shade the brilliance that is this life God has blessed us with.

Live out those blessings, little boy.  There is nothing uneducated, lacking of knowledge, or idiotic about embracing the wonders around us with a smile and optimism.  Shine on, Gideon!  It's all about LOVE.  All of it.   

Gideon's 6th birthday

Gideon is now SIX.  Six!  He was diagnosed at the age of three, so now he has been battling cancer for half of his life.  He doesn't remember what life was like without this stuff… Without the nightly pills, the pokes, and the sleepy medicine.  He sees the clinic as a second home, and the staff there his extended family.  He amazes me with the appreciation he has for the goodness around him.  

Today we basked in the sunshine and took a nature walk with his bird book he got for his birthday.  We spotted birds and listened to the music each one made.  Some said, "Drink your tea!  Drink your teeeeeeeea!" And others sang, "Cheer up!  Cheer up!  Cheer up, up, UP!"  Just a week ago this boy was battling a fever that didn't want to subside.  Finally, after IV antibiotics and oral antibiotics, it was kicked.  I wonder all of the time if his immunity will ever go back to normal.  If it does, what will that be like?  All I know is that his thankfulness in what surrounds him (especially nature) makes me notice the colors around me.  Life will never be black and white and ordinary... 

Happy BIRTHDAY, my baby boy!  I love you.

How Life Works

“This is how life works sometimes,” is what came out of Gideon's mouth as he clutched his puke bucket in his lap today. He didn't say it with remorse or with a whine. It was just matter-of-fact, and it constricted my heart with thankfulness. The days he does not have to leave school clutching a bucket in the car are celebrated. When he is feeling awful, he sees it as a “sometimes” and awaits those precious feel-good moments as though he is peering into the sky on the 4^th of July, knowing the fireworks are on the way. I don't deserve to be in the same galaxy as this boy, let alone car. But here I am.

Thanks, God, for bringing this soul into my life who I am supposed to shape and mold, but who shapes and molds me just as much.

That's where we are right now: coming off of chemo surge week, and he is feeling the pain. But, he is now sleeping on the couch while his favorite classical music fills the room. I gave him his new “Cuddle Bug” stuffed animal from Alex, and he is smashing that love bug in his arms, and I am actually typing this entry so that I am not tempted to smash my cuddlebug in my arms. I don't want to wake him.

He has pain, and a few weeks ago he was plagued by nose bleeds, but... The end of treatment is in sight (AUGUST!)! Also, I am overly excited about what is to come with the Cancer Families United (CFU) group. We recently had our first board meeting, and I was voted in as Vice President. I am excited and honored as we look forward to the opportunities of not only the help this organization can provide childhood cancer research, but the support of families in OUR area fighting this beast. Please LIKE our page on Facebook!

We recently had a CFU get-together with families battling cancer, and what this group is doing to heal and help was already apparent. We bowled, played dodge ball, played air hockey, and even climbed a rock wall! Brody made friends with a little boy whose sister is battling cancer. They were bowling on the same team, and this little friend gave up his turn for his sister to try it, since she was not strong enough to play a full game. Brody is familiar with bald children and what it means, and as his new friend sat his turn out, Brody walked over to him, put his arm around him and I heard him say, “I know how it feels...having a sister with cancer. My brother has cancer, too. Sometimes we have to give up our turns for them, but it's going to be okay.”

Tears.

Make that two souls I was blessed with who, without fail, remove the film from my eyes and the unimportant heaviness from my heart. Thank you, God.

And that is what CFU (now that we are officially a non-profit charity!) is all about: helping families, entire families, inflicted by the horrors this disease brings. Those horrors are monetary, soul-rendering, physically painful for the child, emotionally scarring for all, and life-changing in so many ways. I witnessed two children who get it, felt understood, and felt supported in that instant of empathy (as opposed to the sympathy in which they are accustomed). This was Mary Kay Pederson's brainchild, and I am a lucky girl to have her as both a friend and as a lifetime momma-battler! I am also so blessed to share the table with Jody Crump as the CFU secretary, and the Benneckes as co-founders. It is amazing to be friends with other moms and dads who feel it is our life calling to not only see a cure to childhood cancer, but to surround each family battling with whatever they need to help in every little bit possible.

Out of the Fog

This morning we were propelling through the thickest fog I have ever seen as we drove to school. My heart cemented into the road beneath me when I noticed what caused a traffic jam on Oakland: a deer and a dog were both hit by a car. Worse, the owners of the dog stood on the side of the road bawling and straining to hold their second dog away from the road as it writhed and jumped and pushed to rush to his brother-dog's side. I pointed out the fog against the window that formed little droplets so that Brody and Gideon didn't witness this heartbreaking atrocity. As I sat there wishing there was something I could do and feeling the foggy sadness blanket my heart, little Gideon piped up from the backseat, “Wow! Wow! Wow! Do you feel like an angel, mommy? Because you are driving through clouds! It's soooo beautiful and like magic that heaven came down from the sky!!" And somehow, the fog was lifted since once again, one of my boys said something that jarred my heart out of sadness and into the miracle that is living.

To hear Gideon being so optimistic is a miracle in and of itself. He has been getting so fed up with all of his pain, laying down, crying, all of it. I had to leave school on a few occasions because Gideon was in so much anguish, silent tears streamed continuously from his eyes. He was in so much pain, that while I waited for my substitute to arrive, Gideon slept through 27 students banging on drums. All the while, tears and moans escaped his little mouth. He said in the car, “The only thing that doesn't hurt is my mouth.” I was given permission to increase his dosage to control the pain, and that definitely helped. I wanted to make sure nothing else was at the root of this pain. If it was the chemo, okay. We will ride it out until the end. But what if he had an internal infection (not so rare with kids who have cancer and their immunity is suppressed)? Answers would be on the way via SNOW DAY WEEK.

Yes, last week was a Snow Day festival, I think. I felt beyond blessed and lucky that we had the snow days when we did since they were the days we spent at the Pediatric Gastroenterologist office. Gideon didn't miss school. I didn't miss school. Brody felt like he was a part of the healing by being there (all while not missing a day of learning)! Grateful and relieved, Gideon was slated to go into outpatient surgery as the doctors scoped and biopsied. Their results showed organs that are picture perfect! This means we ride out the pain with pain relievers until the end of chemo this August. You are almost there, sweet buddy! I decided if Gideon is having another rough day at school due to pain, I am pulling Kristen Snow out of her classroom so that we can duet him into smiles. We have one fabulous rendition of Wilson Phillips' “Hold On” song... It's going to happen, and it'll end for all that hear and see our theatrical rendition with laughter. Laughter has proven to be the best pain killer around since this whole cancer thing started.

Gideon with Brody and his nurses. :)

So, now I am feeling that otherworldly peace cushion every curve of my heart. These quiet moments while the boys are sleeping and snow is falling makes me feel like I am inhaling oxygen-love-particles. As soon as I draw in a breath, they ricochet into bursts of warmth. It's all going to be okay.

With that, I want to share a video my principal shared with the staff. It is dedicated to Gabbi, a little girl who is also fighting cancer. It'll make you smile. It'll make you feel those bursts of warmth, and it'll make you want to spread that warmth everywhere. Let's dance.

Make a WIsh Interview

Lots of New...

HAPPY NEW YEAR, everyone! I am relieved and optimistic with the newest addition of Gideon's most recent doctor: Dr. Enow, a Pediatric Gastroenterologist. My hope is that my sweet boy will have relief by the end of the month, or at least be on a path to a more comfortable stomach/intestinal existence. How I love progress!

Our Christmas Break was peaceful and busy at the same time. I adore that dichotomy, since the “busy” is the part when there is a rush to see as many loved ones as possible. And, peace. Well, that part is an absolute blessing. The best part was snuggling under the warmest blanket with my boys in Grand Marais, and watching the snow fall in feathery puffs, like it is in no hurry to join the earth since this will be its lightest and most free moment it'll ever enjoy on earth. It will take its grand entry slowly, and savor the tumble. That is, until Brody forms it into a massive snowball and rips it towards his brother's face. What is it with snow and the need to use it as a combative facial at the ages of 5 and 7? Someone always ends up crying... I made the shoulder-down rule. Sometimes I can be such a drag of a mommy.

It was our time in the snow, that is for sure. While we were snowy cold in the Upper Peninsula, the boys' daddy was in Mexico with his girlfriend, and proposed to her. While I have not met the boys' future step-mommy yet, I know that both Brody and Gideon possess so much love in their hearts and there is always room for more. It is my hope and prayer that future co-parenting with Tom and his new wife will be like that snowfall: calm, peaceful and gentle. I know it is possible and I believe, believe, believe that as long as every situation is viewed through a Godly lens, and one that focuses on the innocence of Brody and Gideon, that calm will prevail. I bought a book tonight on the subject, and plan to read how to maneuver through these newest waters. I know that she treats my boys well, and I know that she will not face any struggles in loving them (but I am partial)! A wise friend told me, “It shouldn't be called a 'step' parent, it should be called a 'bonus' parent.” Bonus love, bonus memories and bonus happiness is what I want for those precious monsters God has given me the gift of mothering. There is a plan for us all!

Tomorrow is spinal chemo for Gideon at 8 am. He will be sedated early-on, and will receive port chemotherapy. Please pray for a working port, a positive attitude for our boy, a smooth injection with minimal side effects. Gideon will be starting his next round of steroids, too. I am hoping they usher in an appetite!

Thank you for the love, prayers and continued open hearts as you think on Gideon. I am wishing all of you a Happy, happy New Year! So are my boys!