The Brave Little Soul

I received this story a few days after Max passed away. It was sent by a friend at Childrens Hospital. I read it once, that week, and filed it away because I wasn't ready for it. There were too many emotions washing over me. It resurfaced in my thoughts this week as I continue to read your comments about how Max's life has changed yours. How this little boy, my son, has made an impact on so many people - many who never even met him (which then brings to mind this):

Children with cancer are like candles in the wind who accept the possibility that they are in danger of being extinguished by a gust of wind from nowhere and yet, they flicker and dance to remain alive, their brilliance challenges the darkness and dazzles those of us who watch their light. - Unknown

The Brave Little Soul by John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?”

God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” he asked. God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.”

The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this – it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer – to unlock this love – to create this miracle – for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!"

God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.”

God and the brave little soul shared a smile, and then embraced. In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.”

Thus at that moment the brave little soul was born into the world, and through his suffering and God’s strength, he unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

And what better to end a post than some random pictures of our brave little soul...

Father's Day/Daddy's Birthday 2008

"Baby Jack loves my red hat."

Cousin Chase is cool.

Thanks to Casa Blanca Spa

The fundraiser for MagicWater hosted by Casa Blanca Spa was a big success. $6500 were raised in loving memory of Max at their three hour event.

I'd like to extend a heartfelt thank you to Marcina, Neil and Kendra Checkett's. You are a great family with a lot of heart and we're very happy to have your support in efforts we believe in. You are very special.

The event was really great, by the way! They had the newest, biggest, baddest SWAT team vehicle there, a fire engine, Kendra's Lemonade Stand (only $6 a glass!), a mojito bar, homemade nacho bar, spa experiences, hair treatments, silent auction for some amazing items, lots of fairy dust... it was beautifully done. Kendra invited Hannah to help her at the lemonade stand and they had a great time, fluttering around in their fairy wings, serving guests, getting their nails painted, and out bidding their parents on auction items (you do the math).

All in all, a great afternoon for a great cause.

Lisa Sturt's speech from celebration

Max with Lisa, his teacher, at our home on Christmas morning 2007

By Lisa Sturt

September 6, 2008 -- 11 months and 1 day ago, I stood before an audience about this size on behalf of Max. We were thanking and celebrating the school community for their amazing generosity and support for Max and Magic Water. It was truly my proudest moment.

And now I find myself in a very similar situation, except it is my hardest moment. And that dichotomy is what I learned from Max. On one hand, you have all the pain and grief of cancer. And on the other Max’s vibrancy, joy, his smile, and zest for life. Max taught me you cannot know the fullness of love without knowing the depths of sorrow.

From the very first, it was like that. After Max and the other kids came to meet me at Mini Open House before the school year started, I cried all the way home bemoaning that he was stricken with such a horrible disease. I tried to pull myself together before I went into the house. My husband greeted me with what was to become our new greeting -- did Max come to school today? I immediately burst into tears and said, “Yes, and I already love him.” However, I said one other thing that I never shared with Andy and Melissa: that Max was going to break my heart. But as it broke, it somehow was also made fuller by Max.

I think most people had a similar reaction to Max. Everyone immediately fell in love with him. And how could one not? He was light and goodness and joy… an angel in our midst.

My favorite Angel Max story occurred during lunch in the nurse’s office. Max was there hooked up to his g-tube when a little girl limped in, crying, with two skinned knees. Max, the one with cancer undergoing chemotherapy and radiation, went over to her, put his arms around her and hugged her tears away. Of course the stickers he shared with her helped, too.

But that was Max. He was friends with everyone whether he knew their name or not. He never differentiated between children, he welcomed them all and shared his smiles and kindness.

Max’s friend, Luke, once said Max makes school “funner.” And he did. His enthusiasm and smile were infectious. And of course Max had his own special way of doing things. If asked to do something, he’d respond, “Aye, aye Captain!” And when done, he’d blurt out, “Whew!” in his little high pitched voice. Then say, “III’mmm finished!” He never read the word fish as fish; it was always fishy. The word big wouldn’t be written like other words… it was written BIG and bold. And he was always drawing, usually fishy scenes, or battles, or airplanes or Star Wars.

I will miss so many things about Max: how he never just said no or yes, but instead no, no, no or yes, yes, yes. How he would hold my hands when he was upset, how he’d steal my chair in reading groups but then make up for it by snuggling up against me. And then I’d pray for him…imagining the cancer leaving his body and coming to mine.

I will miss being wrapped like a mummy with paper towels in the nurse’s office during lunch. I will miss pushing him down the halls making fighter jet noises and pointing out enemy aircraft only to be told that we’re a race car and not a plane. And I will miss being asked, “Whad you say?” and being pushed from behind and told to be the “teacher duck.” I will miss watching Max and Hannah running up to each other on the playground and hugging tight. I will miss his strength, his resiliency, his courage. The qualities of a hero.

Many have said Max was a hero. But I think he learned that by example. Andy and Melissa, by your example. Every day, every hour, every moment, you made heroic efforts to not only save Max but perhaps, more importantly, to give him a life full of wonder and adventures. A rich life apart from cancer. You never failed, you never overprotected, you never coddled. You let Max be Max. You allowed him all the joys of childhood in the midst of your pain. Your strength, your spirit, your courage fueled Max’s own. YOU are my heroes. I am forever indebted to you for sharing your precious son with me and your lives -- allowing me to be a part of so many of Max’s lasts. And Max gave me a last, too.

On our second to last day of school, I was out at recess with him in case he needed help. I had gone and sat a little distance away while he played with friends. He came over to me, sat down, and then snuggled up.

I knew in my heart that it would probably be the last snuggle with him, and I thanked God for it then and there. Then I struggled with do I tell Max I love him? After all, he was just a six year old boy and professions of love from your teacher are not necessarily a routine part of the school day. But I decided to do it! And just as I started to speak, he got up and went back to play with his friends.

Just as it should have been. For Max at his heart was just a regular albeit special and angelic boy. He was not cancer. Cancer was not him.

And as he broke my heart, he also made it stronger and more capable of loving. And while I have one foot in the depths of sorrow, the other foot is planted on the peaks of joy for when I think of Max, I will imagine him as Val, Andy’s friend, described:

A light saber in one hand and a blue popsicle in the other.

Remembering Max

A great post by fellow member of the hardest-to-get-in-to-club-that-no-one-wishes-to-join reminds me to ask for stories and pictures of Max.

By Paul's Dad

Time can be a greedy thing-sometimes it steals the details for itself. — Khaled Hosseini (The Kite Runner)

I just finished reading this novel, which I thought brilliant for many reasons, but mostly because of humanly insightful quotes like the one of above. I have thought about that passage a lot. What struck me about it was how it describes particularly well the battle that those with great loss, like bereaved parents, must fight. Time has already eroded so many of the details of our time with Paul. It is a constant fight to keep time from robbing us of these wonderful details. So, we vigilantly keep our memories alive by repeating Paul stories all the time, saying what he would say, pointing out what he would have done, what he would be doing, what he did, and on and on it goes. Lately, we have brought his name up more and more in these contexts. That tells me that we are mindful of the robber - time - trying to steal our details. So, that is why it is so important for us to see his pictures, talk about him, and to hear stories and memories that you have of Paul. Feel free to join the ranks
of the detailed memory soldiers. (-:

Please send stories and pictures, anything that to you, epitomizes Max (email or just comment here). And any pictures or videos from Max's celebration of life - especially of the fly-by! We have our memories, but would like to know yours as well. We are having some videos created of Max's life. One is going to be especially for Nic. We already watch clips of Max with Nic and Hannah, but this we envision as more a movie, if not feature-length. Our good friend Leo is creating this for us with his kids helping out. Max, it turns out, was the topic of conversation around Leo's dinner table with his kids for the better part of four years during Max's battle. We know there is no one else in the world who can tell Max's story better than Leo.

We have also found an artist that is going to create a permanent resting place for Max's ashes. Because his death caught us quite by surprise - really, we were totally unprepared and unfocused on it happening then - we rushed into a decision for an urn at the funeral home. But really, would an urn from a catalog - something that others had also purchased for their loved ones - do for Max? Not for us. So we decided that what Max came home in from the crematorium was only a temporary home, and that we would create, or have created, something that with one look, would say, no scream, Max.

Thanks to the wonders of Google, 30 minutes of online research turned up Funeria, an artists representative that specializes in "personal memorial art". We found an artist - Chris Rizzo - that connected with Max's story and are signing the commissioning paperwork today. This is a snippet from the email response to my description of what we were looking for, and who Max was.

What a touching story and such a beautiful boy. He really sounds like an amazing person... It is uncanny reading his interests and excitements, for it completely parallels mine; once as a 7 year old boy and still as 35 year old boy. I have always been fascinated with planes, space, the military, and building, building, building. I've still got heaps of legos and model planes. But seeing Max's artwork really confirms the kindred spirit. I've framed some of my young sketches of egg-headed pilots flying planes with outrageous numbers of cannons, rockets, and bombs. Everyone smiling, no specific targets. Just lost in the purity of a 7 year old mind.

Below, a sample of the type of work Chris creates. Everyday we strive to behave and make decisions that honor his life.

Missing Max

Guess what? Life sucks without Max.

Sure, Hannah and Nic provide plenty of reasons to get up every morning. And they make life truly enjoyable. But we miss Max so much. Nic's been having a particularly troublesome time as of late. Bottom line, he misses his big brother and can't understand why he's gone, why he had to leave us, why he's not coming back. I admit, I find myself asking the same thing? Why Max?

Here's what Hannah and Nic have been up to lately...

Eating pancakes in the shape of fighter planes...



Visiting the beach...





Being cute...



Five years ago this October, we were casually concerned about the wildfires raging to the east of us. These pictures of the smoke are quite amazing.







Melis: This October we're missing a child. We're still a family of five in our minds, yet there's only four of us here everyday. We love you Max and miss you terribly.

Max's Aeroplane

I went to the Miramar Air Show today with some buddies and my dad. This was a hard decision for me, as I had planned to attend with Max. This was to be the ultimate air show experience for Max. I had been working on some special angles through my buddy Brian, a Lieutenant Commander who happens to fly for the VFC-13 Saints adversary squadron at Fallon. Instead, I was walking through the show, swearing to myself every time I saw something that I knew Max would have loved to see himself.

As we walked around the tarmac looking at the static displays, we came upon the F5 Tigers that the Saints fly, one of which Brian had flown down for the air show.

I looked at Brian's plane (his call sign is "disco"... long story) and then looked at the other F5 next to his. This is what I saw.



Something on the plane caught my eye and I moved closer to the cockpit. This was a surprise Brian had cooked up for me last night.



I lost it momentarily. So cool. So Max. So perfect.

Thanks Brian. And thanks to the guys on the maintenance crew that did the actual work. The air show and my attitude improved considerably after this.