Love Lemons

Yesterday we received the following email. It's timing was no coincidence, I believe. The sender, the daughter of a very kind and loving family whom we don't see enough of, is Hannah's age, and her younger brother and Max were the same age also. I think Max (or God) is trying to send me a message, perhaps I'm complaining too much and praising too little. Thank you Shiney!

hi how are you? this summer ive raised a lot of money doing lemonade stands with my friends! today im doing one and i made a very great sign telling about max! cant wait to see you again so i can give you the money i raised !

The transformative power of love (or how we came to name Max's Ring of Fire)

Some people have asked lately about the origin and/or inspiration for the name of our foundation, Max's Ring of Fire.

I've also been seeing a lot of comments lately about the upcoming fun-run/fun-draiser Max Run that sound like, "hey, sounds like a great idea, great cause, but... I don't run... I don't like to run... blah, blah, blah"

All the excuses start to sound like Jake Elroy (John Belushi) from the Blues Brothers.



I'm not bitter when people decline to participate because they aren't available, can't afford to, or even just don't believe in the cause. Long ago I chose not to take it personally when someone declines to contribute, participate, or otherwise engage with our cause - life's too short to worry about that kind of stuff (and there's so many people who DO want to help if only you ask and show them how, so that's time better spent anyway!).

But what gets me are the excuses. "Oh sure, I care Andy, just make it easy for me to care, and I'll show up."

As Melissa and I have started giving more and more of our time to fighting neuroblastoma and other causes, a constant theme has emerged for me, and that is when giving is easy, you get less out of it. Giving in a manner that challenges the giver, also helps the giver; it helps them appreciate the sacrifice of their giving more. It makes the giving mean more to the giver. Altruism is a funny concept (quick refresher: altruism being an act that benefits someone else other than the actor). Altruism doesn't align well with biology and evolution.And while I know that evolution exists, I also believe in God. Perhaps that's where love enters the equation. Maybe God's love makes it possible to see past our own selfish interests and limits. To extend ourselves past our comfort zone. Take risks on behalf of someone else, but get something unattainable otherwise in return.

And there you have it, the meaning behind the name Max's Ring of Fire.

According to Rosanne Cash, Johnny's daughter, "The song (Ring of Fire) is about the transformative power of love..." The story is that four years after the song was released, Carter and Cash were married which Cash states helped to stop his alcohol and drug addictions.

I like the Rosanne Cash explanation. And I believe the Love Transforms message from the song, has become the durable meaning of the name Max's Ring of Fire. The video below also demonstrates the reason for the name (simply put, Max loved the song, sang it all the time, and aligned well with the skate, hot rod, alt country aesthetic associated with the Social D version).

Things you find...

... when you really clean the playroom (if you click on the images a bigger picture should open so you can read these):

self dated

written by Hannah while at church camp summer 2009

written by Hannah for Max... 2007?

Sometimes it really pays off to go through each and every page of all those note books and mostly unused journals to find the gems.

Wear Your Care

I came across this video today from Sept 2007, while cleaning up some photo archives on our computer. I don't think I had ever seen it before - watching it of course made me smile and tear up at the same time. This was for a Magic Water fundraiser that Max's infamous first (and second) grade teacher Lisa Sturt conjured up at our school. Hannah and Max are delivering the morning's message to the entire school via the Dolphin News Network, the in-house video network at Solana Highlands Elementary. In all, $11,000 was raised to help fund a cure for neuroblastoma. What do you think, should we try it again this year when Nicky starts kindergarten?

Happy 4th!

July 4, 2007.

This year we'll be watching fireworks from the deck of the USS Midway-one of Max's all-time favorite places to visit. Hope you all have a safe and fun 4th of July with your loved ones, both near and far away.

Max's 9th Birthday

Where the action always is, some great moments capturing Max and his squeaky voice.

Wednesday, June 30, 2010 marks Max's 9th birthday.

I can't explain to those of you who have not lost a child how difficult it is to get beyond the loss. In fact, I don't ever try. Simply put: it's not the same as losing an adult. I find it particularly interesting how I think of Max every time I look at Hannah or Nicky. He is a part of them and they are a part of him, and will forever be intertwined. And the feeling of loss is compounded through them as I watch them grow, as I see their photos on the wall progress, as I see Max's stay the same. Forever 7. Through Hannah and Nic he is with us everyday. I am thankful for that. They smile, laugh and fight and I see Max there with them. It is bittersweet.

This weekend we were at a friends' house for a birthday party and their 9-yr-old son, a friend of Max's, said to me, "Nicky has Max's eyes." Thank you for sharing that with me. Thank you for seeing it, too.

I can't tell you where I am in spirit with one of my kids gone. I think I still float through the days, possibly avoiding it. Avoiding looking too long at any one photo. I think it's time for me to make a new pot of Tear Soup. I'm not sure I ever completed my first pot. I don't think I got the seasoning quite right.

For Max's birthday this year, we will be enjoying crab claws. A favorite of Max's even when he didn't like food. We're going to make some paper airplanes and fly them away on the strings of some orange balloons. We invite you take part - where ever you are - in this celebration of a brave child's life on what would've been his 9th birthday, and to remember all the kids with NB who are fighting the fight, or have earned their wings.

I concur and sign my name at the bottom of Andy's letter to Max (following). I miss my second child. We all miss him. I love you, Max. I remember, not long before you left us, asking if I could spoon with you while you fell asleep one night. You were terribly uncomfortable from all your meds and the cancer, but you needed some love, too. I will always remember lying next to you with the nightlight on, barely stroking your arm, and you falling asleep. You were so sweet, always. Happy Birthday in heaven. I bet God makes good cake.

This is easily one of my favorite Max illustrations. All the red? Chaser bullets. Don't forget to catch the shark with the gun.

(Andy here)
Dear Max,
Well, the big nine-r. Almost double digits. Old men like your dad often take a moment on their birthday to look back and take stock of their lives up to that point. Young dudes like yourself never slowed down enough to look back, instead you were always looking forward. But I can't help imagine what may have happened in your life during the 22 months since you left us. You definitely would have:

• Lost your first tooth (finally)!
• Started and finished 2nd grade.
• Started and finished 3rd grade (maybe Mrs. Sturt would have become a 3rd grade teach at the same time!).
• Convinced me to buy you a bunch of additional airplane models to hang from your ceiling (I know you know that we took some from your shelf and hung them in Nicky's room - he loves them as much as you do and now whispers in my ear on weekends if we can go to "the model store").
• Watched every episode of Patton 360 with me on the History Channel.
• Built some really awesome Lego creations with Hannah, Nicky, mommy and me.
• Visited Legoland many times with Luke, or Jack, or some of your other friends.
• Watched all the episodes of The Clone Wars with your brother and sister.
• Continued to draw amazing pictures of whatever you thought was interesting.
• Continued to observe the world around you with the precision and detail of a scientist.
• Caught some more fish.
• You likely would not have enjoyed all the snow at Lake Tahoe the past two Christmas's, but thanks for sending a bunch for Hannah and Nicky to enjoy.
• Read Percy Jackson and the Olympians.
• Ran around in the backyard naked with your brother and sister when it was warm out.
• Attended KidsGames.
• Started attending Sunday School regularly.
• Continued to grow and start to become a fine young man from the fine young boy you already were.

There are so many things I would like to say to you Max. Maybe you can intercept my thoughts about you every day. Maybe when I say "hi" to your pictures on the wall or on the computer you can hear me. I hope so. I miss our conversations, I miss your questions. How much I ache to touch your almost porcelain-white skin again, hear your squeaky voice talk about battleships and WWII fighters again, see your smile.

I know you're in heaven right now. And even though I didn't teach you much about heaven before you died, I know you went there immediately. You were the purest person I'll ever know. There was not one malicious fiber in your being. Not a bad thought about anyone - you wanted everyone to be happy, to feel loved, to have fun.

Happy birthday my sweet boy! I will always love you. And I will see you again someday!

Daddy

Reach 4 The Sky

Hannah boarding the bus to Camp Reach 4 The Sky

This morning I dropped Hannah off at her usual spot this time of year, to get on a bus and go to the local mountains for a week of sibling camp at Camp Reach 4 The Sky - staffed and attended exclusively by kids & young adults affected by their siblings' cancer. Hannah just adores this week away. And while we will miss her (usually around Thursday... don't tell her!), it is once again a bittersweet moment...

Max at Camp Reach 4 The Sky (day camp) in July 2008

This father's day was pretty busy. We were getting ready for Hannah's week away and Melissa was volunteering at our church's Kids Games that we attend every year. This year its only Nic attending, and he wasn't too excited about it either, but after day 1 (today) he's totally into it.

All this summer stuff brings back many memories of Max which is both great and tough to deal with. Lately, I think we've all be having a rough time of things, even if we don't recognize or admit to it. Nic especially, exhibits behaviors that really show how much he misses his big brother. He just latches on to older boys like nothing else. And it just tears your heart out to understand what's going on and see his "thirst" for that older boy relationship be quenched, albeit only temporarily.

We are making plans to celebrate Max's 9th birthday this June 30. May and June are rapidly becoming months I'd rather skip over, much like November and December are already. There are just so many opportunities to miss Max due to all the birthdays (Melissa, me, Max, then Hannah in mid-July), mother's day, father's day, end of school, etc. We are trying to turn Max's birthday into something of a tradition that we can replicate. Even though food was not big on Max's list of "likes" (he did have the g-tube for over a year), one special food that he liked to enjoy at times was crab. And so we will have crab for dinner every June 30. You can too if you'd like. And get claws... to play with.

Touch-A-Truck Blew the Doors OFF!

It's Monday and back to the grind. I'm in mop-up mode following a wildly successful event. We raised just about $29,000 for childhood cancer on Saturday, and most of it was through admissions and general donations at our lemonade stands, bake sale, cake walk, and through the efforts of our armed forces. (huh?, you say?) The Navy SEALS and Marine MARSCO units did a little fund raising on their own for us in the Camo-Area of Touch-a-Truck. They rock in so many ways. Here they've teamed up with a special Star Wars Unit... (Needless to say that everyone had a great time - even the big kids.)
We made some incredible new friends this year who we hope to take with us into the future of this event. Yes, the future. Saturday 's attendance was over 2500 by our estimates. This is up 5x - 6x times from last year. And from the response we've received thus far from attendees and participants, I see this event being bigger, Better, LOUDER every single year. Changes will, of course, have to be made to make sure it's as enjoyable in a larger format as it was this weekend, but I think with the dedicated people we have who are willing to help us, we can do it.I couldn't possibly end this post without photos of my kids at TAT. Here are Hannah (middle) and her two best friends, Jenna and Storm Trooper - and, yes, that is a sand-person peeking out of the back of the Deuce. Below is Nicky on top the armored HV playing with the 50mm gun. Atta Boy!

Max was certainly smiling down on all of us Saturday. Here's a photo of him... (on the dash)

What was he thinking?

I have generally avoided looking at this series of pictures by Deb taken in mid-August 2008, on a particularly painful night when it was clearly evident that life as we knew it for Max was going downhill, fast. But this one came up on the screensaver tonight and it captured me. Knowing the location and the direction he was facing, I know he's looking at nothing - well, the sky - but nothing else. What was he thinking? What was he feeling? Who might have been talking to him in words I'd never hear, as my heart wasn't able then to allow me. I'd give my right arm to be next to him for 10 minutes, so that I might ask the question I never did.

Curls

Neil mentioned Max's curls a couple of weeks ago. I've been thinking about them since... and I realized that this was during the good times so we didn't post much. But we see these pics everyday as they come up on our computer monitor's screensaver, so thought I'd share some favs. These were all taken during 2006, from Spring through Summer.

First Since Without

I forgot about these pictures. We had them taken in April 2009 by the inimitable Deb Schwedhelm. Our first since Max died. I hate to admit it, but I'm not much for taking "family" photos these days. We take tons of photos of the kids and all but it's weird taking them without Max. Sorta like a slap in the face reminding you of what's missing versus what's there. I know, it's all in my mind and a simple shift of attitude changes it from "what's missing" to "what's here" but sometimes attitude doesn't win out over the plain old truth that Max is no longer with us.

However, Nicky saved the day for us. Out of the blue, he started singing Ring of Fire. He actually did a pretty good job. Hasn't done it since. Never did it before this day. That's why he's standing in the picture above.

Easter Break

Another holiday. Another time to remember funny little things about Max, while watching Hannah and Nicky display some of those missing actions without even knowing it.

We were truly blessed this year to have Donna Ludwinski stay with us over the weekend. Donna's son, Erik, just passed away two months ago (NB) and their grace in handling his death is beyond inspiring. Donna was great therapy for us both, but I think even more so for Andy. I can't explain her to you. You have to read her blog about Erik's journey - about their family's journey - to even come close to seeing into her. Their spirituality, their belief in Jesus and eternal life, gives me such peace.
Donna flew out from upper Minnesota for Sam Hutchison's All-Star Party... perhaps better explained as Sam's Celebration of Life - Sam's battle ended four weeks ago. The Hutchison's and their friends and family did Sam right with an all-sports theme party. He was certainly smiling down from heaven with Erik and Max holding his hands.
Easter arrived and was happy and multi-colored for all of us. I mean, what's more Easter than fluffy blue bunny ears? The kids had a great time coloring their eggs as usual, although we were missing Mr. Blackfinger (Max). Somehow, he always colored his eggs with his hands - no spoons please - and his fingers would be blue-black for days. Nicky had a little of it going on but he freaked out and wanted no more of it!

Hannah has always used the proper technique of dipping using the little metal bendy thing that is always included in the Paas box. She was quite creative and patient this year and ended up with some splendid eggs.

The Easter Bunny naturally had the eggs hidden throughout the house when the kids came downstairs Sunday morning. This particular orange egg stayed well hidden right on top of Max. Nic finally spotted it.

Donna joined us in church Sunday morning and then we put her to work hiding plastic eggs with Andy at our bluff park. I think we had over 100 eggs for only two kids! It took longer to hide them than to find them. This is Donna and me at Powerhouse Park. (She's the one in the Minnesota sweatshirt.)Our Max sighting for the day was this red tailed hawk swooping past the bluff park carrying a bunny away for Easter dinner, presumably. In our Lion King mentality we thought this was Max's very funny way of saying "hi!" on Easter. He loved raptors, so this was perfect. In real life it looked like the bunny was hang gliding... well, kinda.

The kids had the week off so I took them up to Uncle Kevin's and Aunt Reba's house in Santa Cruz. (Andy had to work unfortunately, but I think he probably enjoyed Bache-ing it for a few days!)
Day one Rebecca and I took the kids to the Santa Cruz Boardwalk. Hannah's definitely our rollercoaster girl. She loves the crazy rides and doesn't care one bit about going in line by herself. She is SO easy! This is her in seat 10 on the big swing.

This cute little blonde kid with Hannah and Nic is cousin Kanan, my brother's grandson. Kanan is six month older than Nic, who in turn in six months older than cousin Katie. At some point in the family's future this will be great when we all get together. It's good to have cousin's your own age!
Hannah took Kanan on the kiddie coaster. They went around two times like that. So cute. It looked like so much fun, that timid Nic decided he was game for the ride. We went on and it was a small disaster. Nuf said...
Not to say that Nicky didn't enjoy some of the offerings! He's simply not Hannah.

Day two of the trip my brother and I took the kids to the Monterey Bay Aquarium. Wowsers. Our Birch aquarium is tiny! Hannah could've spent 12 hours in there exploring and examining everything. Me too. It is amazing.

On our last full day we headed north up Hwy 1 to check out the rugged coastline. So beautiful. We even saw otters in the waves! It was a very fun trip and one I thoroughly enjoyed with the kids. It's good to Live Life to the Max and I think we got that in this past week.

Clash @ Clairemont

This weekend Melissa is working at the Clash @ Clairemont so maybe I'll take Hannah and Nicky to check out the action. Two years ago, I had to honor of taking Max to the Clash. He and Sam got to hang with Tony Hawk and friends at the top of the big half-pipe they had set-up. Poor Sam had both legs in casts from ankle problems related to his cancer. F*%$ing cancer!

Sydney Dudley - Angel

Sydney Dudley passed away on Friday night, not too long after Sam passed. To have two kids whose lives we follow so closely pass away suddenly so soon after one another...

Here's the news posted on her CaringBridge site (registration required) by her mom Rhonda:

Sydney Marie Dudley went to heaven....very suddenly.......we think she bled internally......

I will never be the same.......

my baby girl......

Though we never got to meet Sydney, Rhonda's amazingly positive and wacky posts described a girl whose heart was pure and loving. Sydney was treated by Dr. Sholler and they were friends as much as any two people could be, and so I know the good doc's heart is very heavy right now processing Sam and Sydney's passing.

Please pray for Sam and Sydney's families. While hearts are heavy here on Earth, I'm sure Max, Erin, Eden, Penelope, Ryan, James, Nathan, Spencer, Lucas, Dustin, Cody, Zachary, Katie, Austin, and all the other NB kids who preceded Sam and Sydney's entrance to heaven, greeted them with open arms and enveloping love.

Garage Sale - rescheduled

In light of Sam's passing, I am postponing the garage sale until the end of April. Thanks for you understanding.

Sam Hutchison - Angel

Sam made his way to heaven this afternoon.
Please leave a note for his family...

Team Sam

Max and Sam in the hospital getting chemo together as only kids can do.

10, 9, 8, 7...

We are close to launching the marketing effort for Touch A Truck. The new Max's Ring of Fire web site is up, ready, willing, and able to collect and process entry ticket and raffle tickets sales. We still have a few needs for raffle ticket prizes - mostly in the upper range of value ($2,000). We have a lot of irons in the fire for this prize tier, but need to make sure that we have a really attractive package of prizes for people to have a chance of winning. So, if you have ideas/connections, please let us know. Melis and her dedicated team of volunteers (meeting again tonight) have all been working very hard to lay the foundation for a great event which should raise a lot of money for childhood cancer research and clinical trials.

Now the REALLY hard part is about to begin: Promoting the event.

How can I help you ask? Glad you asked, here's how.

1) Tell your friends. Email them a link to Max's blog (www.MaxMikulak.com), Max's Ring of Fire (www.MaxsRingOfFire.org), or spam your Facebook friends and send them to our Fan page (www.Facebook.com/MaxsRingOfFire).

2) Help sell raffle tickets. If you want to sell them in your neighborhood, let us know and we'll get you a batch. Got an iPhone? We can give you a secure credit card terminal that accepts all major credit cards (just like the iPhone commercial, complete with fingertip signature)!

3) Get stuff. We can always expand the raffle or even hold an auction at Touch A Truck. Contact us or sign-up on our Max's Ring of Fire volunteer form.