Saturday, April 20, 2013

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.  

Wednesday, April 3, 2013

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.