Max Mikulak and The Power of Love

Max is a wonderful little boy who fought the fight against neuroblastoma for much of his young life. Max was born on June 30, 2001. Max died on August 31, 2008. On his blog, "Max Mikulak - Neuroblastoma Angel," it says he will be "forever seven." I don't know how I came to know of Max, but, I am glad I did. If you read about his life and his wonderful family you will understand what an amazing person Max was and how much he was and still is loved by his Mom, his Dad, his sister and his brother, his family and his friends.

Max's family continues to fight for a cure for neuroblastoma, a form of pediatric cancer, which is so underfunded that parents of the children with this diagnosis often join together to raise money to fund research and new clinical trials so their own children can receive treatment. This year on Nick's birthday, September 11th, the Mikulak family is sponsoring their first annual Max's Fun Run, to help save kids with cancer! The money raised goes to fund neuroblastoma research and 100% of the proceeds will go directly to the doctors who are doing this much needed work.

The Mikulak's have created a non-profit organization dedicated to this cause, it is called, Max's Ring of Fire. The story of Max and the Ring of Fire song can be found HERE on Max's blog page, this is where I first saw a video of Max singing the song. I love when Max sings the Ring of Fire song. You gotta love a kid who likes Social Distortion and skateboarding. When I hear that song it makes me smile. I don't know why but little Max just reminds me of Nickolas.

Anyway, this year instead of doing the Light the Night walk, I am asking anyone and everyone who may still be reading my blog to support Max's Fun Run by DONATING whatever you can to this important cause. I know Nick would approve and I hope Nick and Max have found each other in the great beyond and are hanging out. Max was a big Star Wars fan, he loved ships and WWII planes. He was a very smart little guy and I think Max and Nick would get along famously. I know they have a lot of war stories they can share as well.

Please watch the video below to see some great photos of Max (with his sister Hannah and his brother Nicky) and hear Max belting out the Ring of Fire song. There are many other pictures and videos of Max on his sites.

To donate, please click on the CHIP IN widget on the side of my blog and you can donate directly to Max's Fun Run. Remember ANY donation is much appreciated. Max's Fun Run will happen on September 11th, so don't delay! What a great way to celebrate the lives of two wonderful and courageous young people, Max and Nickolas!

Light Up The Sky

It is hard for me to understand how an entire year has passed since Nick has left this world. My heart is forever broken and I somehow know I will live with the pain of this loss forever. I miss Nickolas more than words can say. This picture is a good one of Nick and Katie K. I love Nick's hair and his wonderful smile. I love seeing how tall he is and how healthy he looks in this picture. It makes me sad for all the things that will never be. I mourn for the future we all lost, the new memories of times with Nick we will never have. It is hard living with only past memories. It is hard to think my memory will fail me and I won't remember his face, his smile, his voice, like I want to, always and forever.

For the one year anniversary of Nick's death, August 13th, Glenn & I went to the beach and we took Nick with us. Sara decided she did not want to be on the beach for that day so she spent the day with a friend at home. Sara chose of a fitting celebration of a "Day of Eating." I know Nick would love this because he loved to get his eat on and that was something that was taken away from him for so long when he was sick. Glenn & I drove down to Ocean City on Thursday night and then on Friday, we had a one day remembrance that was quiet and serene.

I was not sure what I wanted to do for Nick on this day. I only knew I wanted to do something. My sister Barbara figured out how to make a Loi Krathong. It is a custom in Thailand and you make a raft like platform that holds flowers, candles and incense and then you send it off on the water. Without getting into all the detail, we launched the Loi Krathong at dusk on the bay side while the sun was setting. We were not sure if it would float, but, it did and Glenn & I, Barbara and Nick's grandfather, all stood and watched as it floated out into the bay. We watched it for as long as we could. It was very peaceful and beautiful.

Earlier in the day I had set my phone to alarm at the exact time of Nick's passing. We had been busy that day doing lots of things that Nick loved to do and I wanted to be on the beach at that exact time. We had gone to eat breakfast at Jimmy's, then we went to visit with Nick's grandma, then we hung out at grandpa's and made the Krathong. Then we all packed up and went to the beach around 5:15PM or so. We took some chairs and a blanket. Nick's grandpa took a cigar to smoke in Nick's honor. (Nick's good friend Barrett mentioned that he would have a "black & mild" burning in Nick's memory that day.) We actually took Nick with us everywhere that day and so he was off to the beach with us. It had been cloudy and overcast most of the day, but, it wasn't raining, so we were happy to be able to get on the beach.

We had just arrived on the beach and set-up our spot when my phone alarm went off. It was 5:40PM, the time of Nick's death. Almost at that exact moment, Glenn called out, "Look there's a rainbow!" We all looked up to see a beautiful rainbow peeking through the clouds. I was amazed. We all got teary and cried. It seemed like Nick was letting us know that he was happy to finally be on the beach with us and that he was enjoying our little celebration. The rainbow persisted for quite a while and even came and went a few times. I am not one to really believe in "signs" but I felt the timing of this one was just too much to be a coincidence. These things don't happen often, so I can only cling to the hope that somehow Nick is still with us and he will let us know whenever he is able.

On Sunday, August 15th, Glenn & I took Nick to the mountains. We traveled quite a fur piece, all the way to Boone, NC to see Grandfather Mountain. It was a nine hour car ride and it was hot, humid and rainy almost the entire time. We came home a day early because I couldn't be away from home any longer. I still get very antsy when I am away from home, I don't know why. I feel better now that I am here. I had quite a few meltdowns during the trip. It is quite overwhelming to accept that "life goes on" and it has been a year and somehow I am still alive and breathing. There are lots of days when I don't want to be here anymore. I am only in the infancy of this grief. That is hard to face also. I wonder how long I will feel this horrible pain? How many more days, weeks, months, years? When will I understand why this had to happen to our beautiful, sweet boy? How is it possible to miss someone so much and why does it hurt so badly?

I love you always and forever my sweet son. I love you more than a wagon full of puppies. Please come home. Mom

P.S. - We also bought some Wish Lanterns that we wanted to send up into the sky, but, it was too windy. We hope to be able to send them up on Nick's birthday. They look so beautiful and I want Nick to see them and know that we are missing him and loving him so much. They are 99.9% biodegradable and the next time we order them they have new ones that are 100%. The same was true of the Krathong, we didn't want Nick to get upset that we were messing with the eco-universe. Not sure what I want to do for Nick's birthday, still thinking on that.

P.S.S. - Next post, I will try to put up some pictures that we took. Also, I will be putting up some info on Max's Fun Run that will be happening on Nick's birthday out in San Diego. I will be posting Max's story and I am hoping to get everyone to donate to Max's Ring of Fire instead of doing the donations for Light The Night Walk this year. More explanation soon.

Dare to reach out your hand into the darkness, to pull another hand into the light. ~Norman B. Rice

His high endeavors are an inward light
That makes the path before him always bright.
~William Wordsworth

Round Here

round here he's always on my mind
round here (hey man) i got lots of time
round here we're never sent to bed early and nobody makes us wait
round here we stay up very, very, very, very late.

i can't see nothing, nothing round here (oh)
won't you catch me if i'm falling?
won't you catch me if i'm falling?
won't you catch me cuz i'm falling down on you.

see i'm under the gun round here
oh man i said i'm under the gun round here
and i can't see nothing, nothing round here.

Why Are Your Poems So Dark?
Isn't the moon dark too,
most of the time?

And doesn't the white page
seem unfinished

without the dark stain
of alphabets?

When God demanded light,
he didn't banish darkness.

Instead he invented
ebony and crows

and that small mole
on your left cheekbone.

Or did you mean to ask
"Why are you sad so often?"

Ask the moon.
Ask what it has witnessed.

Painting by Crawfurd Adamson. Website: http://crawfurdadamson.com
Lyrics "Round Here" written by Adam Duritz and Dan Jewett (Counting Crows)
Poem written by Linda Patsan

Not Fully Myself

No creature is fully itself till it is, like the dandelion, opened in the bloom of pure relationship to the sun, the entire living cosmos. ~D.H. Lawrence

Ask My Mom How She Is
~Author Unknown

My Mom, she tells a lot of lies,
She never did before
But from now until she dies,
She'll tell a whole lot more.
Ask my Mom how she is
And because she can't explain,
She will tell a little lie
because she can't describe the pain.

Ask my Mom how she is,
She'll say "Oh, I'm alright."
If that's the truth, then tell me,
why does she cry each night?
Ask my mom how she is
She seems to cope so well,
She didn't have a choice you see,
Nor the strength to yell.

Ask my Mom how she is,
"I'm fine, I'm well, I'm coping."
For God's sake Mom, just tell the truth,
Just say your heart is broken.
She'll love me all her life
I loved her all of mine.
But if you ask her how she is,
She'll lie and say she's fine.

I am here in heaven
I cannot hug from here
If she lies to you don't listen
Hug her close and hold her near.

On the day we meet again,
We'll smile and I'll be bold,
I'll say,
"You're lucky to get in here, Mom,
With all the lies you told!"

“We must embrace pain and burn it as fuel for our journey.” Kenji Miyazawa

The Sun, The Moon, and the Truth

Moonlight slanting

by Matsuo Basho

Moonlight slanting

through the bamboo grove;

a cuckoo crying.

It is difficult to describe the day-to-day journey of living without Nickolas. I do not sleep well. My thoughts are fragmented and I feel lost in a world not of my own choosing. I don't know how to escape this place where I must now dwell for the rest of my life. The summer days roll on, each a reminder of the all that Nick suffered at the hands of a cruel fate that he did not deserve. I am swept along in the turbulent waters of a powerful emotional tsunami. I have no control over this liquid pain. The memories wash over me. There is dangerous debris floating along in these murky depths; they strike out and cause injury when I least expect it. Suddenly I find my arms and legs entangled and I am helpless to fight another day. I feel the undertow and my weary body no longer wants to fight. I relive the final days of Nick's life once again. The day of Nick's death looms near. I am so angry that it will soon be an entire year that I have lived without him. How is that possible? I don't want to live without Nick.

I don't know what to do. I am so tired. Sometimes I just want to stop being. I just want to stop. Is there a switch somewhere that I can flip to shut this down for a while? Forever? I wish I could explain how horrible it feels to be reminded over and over again that Nickolas is forever gone from our lives.

I love you Nick. I miss you so much. This poem reminds me of you hiking the Appalachian Trail. When you are done with your hike, please come home. Mom

The Road was lit with Moon and star ~Emily Dickinson

The Road was lit with moon and star --

The Trees were bright and still --

Descried I - by the distant light

A traveler on a hill --

To magic Perpendiculars

Ascending, though Terrene --

Unknown his shimmering ultimate --

But he indorsed the sheen --

“Three things cannot be long hidden: the sun, the moon, and the truth.” Buddha