Thursday, June 28, 2012

SUMMAH tiiiiiiiime

Gideon's most recent battle with pneumonia has been won, I just brought Brody back from his last day at skateboarding camp, and now we can't seem to sit still due to the INCREDIBLE excitement that creeps in as our approaching trip to Grand Marais draws nearer! We are daydreaming out loud about all of the incredible things we plan to do up there. Speaking of Grand Marais, I would like the town to know that Brody purchased some Captain America costume pieces with the money you sent. He'll model it for you in the 4th of July parade. Gideon bought a glider... That will be sailing over the bay, I am sure. Grand Marais continues to love on my boys, and we can't wait to love on you SOON.

Yes, we are excited. Gideon's emotions are in overdrive since he had his Vincristine chemo on Tuesday and we are heavy into STEROID WEEK. I am hoping that the Gideon I transport for 8 hours up north in the car will be the sweet and loving part of the chemo accordion. I would rather pull over for cuddling and not to restrain him from Hulking-out on his brother. I am nervously laughing right now...hear it?

Ahem. Gideon's numbers at clinic were phenomenal. His cough from pneumonia is almost gone! When he was allowed to get a "poke prize" from the treasure box, he picked UNO. We have UNO, but I soon found out why he chose that game. A bunch of his chemo kid friends were in the treatment room, and he wanted to play with them. He told me after the cancer kid camp (Camp Catch-a-Rainbow) that Kevin is now his best friend. Kevin was one of the boys in the room, as well as beautiful Camrie. Gideon finished in last place, but he smiled and gave his friends high-fives as I sang him the "Losing Song". I am sure you know it: "WAH-WAH-WAAAAAAAAAAH!" He thinks it's a funny song, thankfully, and doesn't mind losing since he gets to sing the ditty with me. Let's see if that attitude stays this week... Crossing my fingers.

(Gideon with his Cancer Fighting BFFs!)

Now... I think with the proximity to the fourth of July, I need to explain what an extreme blessing my trip to Washington D.C. turned out to be. Mary Kay, Emma's mommy and a SUPER amazing friend of mine, was my advocating partner for the trip. We traveled together, visited congressmen/women, and senators. The amount of information we learned was astronomical, but the immensely huge reward of feeling as though we were ACTIVELY changing something in our government in the names of our children...there are no words in our language. That type of honor, privilege, and gift was elevating my soul as a constant balloon that lifted me someplace higher than I have ever been.

We were told that "The Creating Hope Act" was on the five yard line and that our help was needed to push it all of the way through Senate. It passed the House, but was in conference. We needed to convince the Senators to pass the bill as the House depicted it: giving pharmaceutical companies incentives (a monetary carrot in the form of patenting other more money-making drugs longer, so no tax money would be used) to develop NEW drugs for pediatric cancer patients (a new drug hasn't been developed since 1980 because...get wasn't PROFITABLE), but also to fine companies that do not comply with alerting the FDA when life-saving medicine was going to be in short supply (the stick).

Mary Kay, myself, and two other families (including their superhero kids) attended the meetings together. We took turns describing why our "Three Asks" (as seen in the video below) greatly affected OUR children. We shared anecdotes and even tears. What politician could look us in the eyes and say, "No"?

As I walked the Hill from one appointment to the next, a heavy sensation of pride for my country overtook me. It did. Complain about taxes. Complain about healthcare. But guess what? We are ALLOWED to complain. We are granted that freedom. Just like I, a simple citizen, was allowed to lobby for my cause in order to make bills move faster for my beliefs. What an HONOR. When I was in China, a Chinese tour guide smiled and said, when asked, that "The one child law is right and just." Her smile didn't reach her eyes, and when she turned away, the smile didn't just go away, it instantly vaporized into a scowl as she turned her face down towards the ground. Yet another Chinese tour guide actually DENIED there ever having been tanks in Tiananmen Square, and shook his head in confusion of not understanding who this "Tank Man" could have been. I was heading to a sit-down meeting with a man who helps makes LAWS for our NATION. We are allowed to do this. We can make things happen! To be honest, I dreaded US Government class in high school. I simply memorized the governmental roadmap for the test and I didn't really care much more than that A grade. But to BE THERE, to be actively involved in something so much bigger than I have been biten by the governmental vampire and I am thirsty to do MORE, MORE, MORE in order to do something good of our nation.

We are a blessed people. As you can see from the video below, our efforts were not in vain. God Bless the USA, and God BLESS those children with cancer who the government granted a VOICE in our nation (finally!).

Monday, June 18, 2012

The Oudings

I will blog about my amazing experience in DC lobbying for childhood cancer. I will blog about Gideon's first experience at Camp Catch a Rainbow with all of the other children fighting cancer. I will blog about Brody's amazing seventh birthday... I will blog about it all, but first...

First I need to say that two amazing people lived two doors down from me when I first moved to Kalamazoo. We lived on a cozy Milwood street where every house seemed to breathe with its own character and charm. The houses had more stories than the people who owned them, there is no doubt about that. Old and thick tree trunks lined the road, and perennials from what seemed to have been planted a million years ago popped up huge and impressive in every garden. I loved it there. I loved that we closed down our street to have our own summer festival. I loved how everyone helped one another out.

My favorite neighbors, the Oudings, stood out above the rest. Katie ran her own daycare out of her home and I tried and tried to get Brody in as one of her charges, but the girl was TOOOOO popular. I was forever on a waiting list. It was no surprise as to the reason. She ran her daycare with a sweet calmness that seeped with learning and exploration. She loved those children and poured herself into them (she reminds me a lot of the boys' current daycare provider, thankfully).

Mike, her hubby, was into the same quirky movies I was into and it was beyond easy to talk to both Mike and Katie. When we had to move away, I think I cried about the house as well as leaving such an amazing street. A couple of months before the move, Katie introduced me to her "instant family" as she called it. She and Mike adopted three Liberian siblings: Christian, Blessing and Vic. Vic watched us guardedly, but it was obvious that this little honey had a ton of personality. Blessing smiled happily when she met Brody and me on our walk. Then there was Christian. I will never forget the way he went right up to baby Brody and instantly connected with him. Christian seemed to have that "big brother" charm with the little ones. He had a true glow of life that poured out of his eyes, and he was so very polite.

Unfortunately, this was my only one-on-one experience with the children as the Oudings moved to the Grand Rapids area soon after we moved. Thankfully, we stayed connected through Facebook. I happily watched as their family grew in size and in number. When Gideon was diagnosed, Katie and Mike showered countless comforting and loving words on us. They made me laugh over our "little girl mullet" comparisons that both Katie and I sported back in the day, and they just are a family I truly look up to and respect.

They were there for me through my tragedy, and now I am finding it impossible to find a way to be there through theirs. Tomorrow I will be going to the visitation for Christian, their oldest child, who lost his life to Lake Michigan. He was a true soccer prodigy, and he never lost that glow of friendliness that made such a deep impression on me. Here is where I am lost. Here is where I just want to pull out my hair and scream out "WHY". Ouding family, your grace through this tragedy is nothing short of miraculous. I wish I had something I could say or do to lift some of the crushing heaviness that is the weight of losing your son. That is impossible.

The only thing I can think of is to send out this story of your incredible family on Gideon's cancer blog. As tiny as it is, all I can do right now is send out a message to everyone else, everyone else who still has a family with living and breathing children within the four walls you are blessed enough to call a "home" (including myself):
- Never leave one another without an "I LOVE YOU."
- Inboxes are inboxes, dust is dust, messiness is messiness, and it will always be that way. Kids will not always be kids, so stop stressing about things that will not matter in 20 years, and LIVE.
- Bask in memories and moments.
- Surround yourself with supportive and understanding people. People who do not feel that they are "owed", but continuously reach out with loving hearts and gracious spirits. A friend is someone who you may not see or talk to often, but when you are together, it feels like home.
- Be yourself and open yourself up to let the people in your life change you for the better.
- Focus on the blessings in your life and do not let negativity cloud what you have in the here and now.
- Do not look sideways at the people around you and the things of this world. Focus inward and let all that is in, out. Shine that soul of yours to others every single day, the way Christian did.

So many prayers are headed in your direction, Ouding family. Everyone who reads this, please do the same and pray. Thank you.

Friday, June 1, 2012

It's Friday :)

Yesterday began my folded-accordion-of-emotions boy. One narrow paper accordion plane is a sweet and happy boy, but it butts right into the paper part that is frustration and moodiness. That one rests on the part of the fan that represents the hunger and the cravings...where nothing else matters and all the world is a chicken drumstick. On and on the fan folds, back and forth, emotion resting upon emotion until the fan is complete and the week that is Steroid Week is fanned into a fire. We never know which section we will be in, and everyone watches him, waiting. I just want to reside in two of those fan sections: the cuddly love and the sweet and kind section.

Before he took his first steroid of this regimen, Gideon was sick twice yesterday, had chemo at the clinic and was the most constipated I have ever seen him. I was supposed to hang out with my cancer-mom-friends last night, but there was no way I could leave the boy with a toilet attached to his bottom as tears ran down his cheeks and he cried, “Owie. Owie. Owie.” He sat there for an hour as I knelt in front of him, rubbing his belly. THANK YOU to all of you who helped with advice! We went the Miralax, 7Up, and Prune juice route. I am happy to report: The Portage sewers tripled in capacity around 10:30 last night. Taaaadaaaaa! Don't worry, I won't attach a picture.

I adore Gideon's free nature, and I know that the drugs hinder who he truly is as a person. I love how he is so in touch with not only his nature, but nature-nature. He will forego any game, any ride, anything at all to plant a flower in the garden with me – even when he is deeply entrenched in his steroid usage. He is so curious about how an ant lives out her day, about the way clouds change shape, and which birds sing which song. He wants to know the name of every plant and every flower. My garden has never been so green, so flower-filled as now. My boy never forgets to water it, he deadheads better than I do, and he always takes the time to admire all that grows from the earth as he weeds. We could both spend an entire day in a greenhouse. My personal, most recent favorite activity is to go on listening walks with my boys. At night, we listen to recordings of birds known to live in our area, we study the sounds and quiz one another (the cardinal thinks everything is “PRETTY.” He is forever chirping, “Purdy! Purdy! Purdypurdypurdypurdy!” A good reminder to look around outside, huh?). Then, we go for a walk the next day and try to pick each song out of the choir of birds. Life is so gorgeously musical when we can isolate every piece of beauty, every section of the bird choir, and appreciate an individual sound. Ugh. May I say how thankful I am for my boys? They slooooow me down to make fleeting moments last, and the smallest and most ignored things the most gorgeous.

I also want to celebrate how my Brody is becoming such a peaceful problem-solver. When Gideon is ready to attack with fists flying during steroids, Brody has a way of blanketing him with peace. We ran out of time for a bath, so it was shower-time instead. I packed them both in there, and immediately there was a fight over who got to be under the water stream. I heard Brody say cheerfully, “I have an idea, Gideon! How about we take turns under there? The person out of the water gets to play with a toy while he waits. Do you want to have the first turn under the water?” Notice how he didn't ask if Gideon wanted to take turns, he just offered Gideon the first turn. This boy is going somewhere. I know it! He also said to me yesterday, “Mommy, if I could get a Beyblade organizer, that would be great. I will sort the parts into different compartments, and then I will have great practice to help you organize your drawers. I could put your paints in one holder, your brushes in another, see? That Beyblade organizer would help both of us.” SQUEEEEEEEZABLE.

Brody and Gideon, when you read this blog someday, I want you to take note of the date. This was the week that our “PEACE SIGN PRAYER TIME” was completely taken over by the two of you. This is a huge deal to me, your mama. Incase you forgot (I hope you haven't), on our way to school each morning, I reach my hand into the backseat. Brody grabs my thumb and Gideon grabs my pinky. Our arms make a peace sign, and I pray about our day. I thank God for waking up and hearing two sweet “Good morning”s coming from your precious mouths. We talk to God about our hopes, about our sins, about things we want to change about ourselves and how we need to love those around us – especially the hard-to-love ones. We pray for grace and that we can extend that grace out of ourselves. Mommy prays that she doesn't lose sight of the good in ALL people, and that her momma-bear claws stop popping out over small issues. Brody prays that he smiles more at people, and Gideon prays that he will try new food without gagging it back up. You both used to add snippets, but let me pray the bulk of it. Not this week. This week, the peace sign was extended and I asked Brody if he wanted to start. Brody, your prayer flowed out of you as you talked to God like the personal savior He is, and I felt tears of absolute elation prick in my eyes. You said after your prayer, “Gideon, would you like to keep going?” And Gideon, you just let it all out: Praising God for the rain because you knew your flowers would grow the best from rain instead of the hose. You went on to pray that you would do better at listening to mommy the FIRST time. Again, you prayed about it all. I felt the Holy Spirit filling my soul with light because of you boys. I can't wait to hear what you will say in today's PEACE SIGN PRAYER TIME. Speaking of, time to go!

The world is going to be alright. Happy Friday, all!