Strange

Today I'm taking off work to just "be" on this first anniversary of Max's passing. I won't fool you, I have nothing profound to say today. No magical insight. No message of hope and better days ahead. The process of grieving is unique to each of us, but it all follows somewhat similar paths.

Since joining this "most exclusive club that no one wants to belong to" 365 days ago, I've become a sort of connoisseur of other angel parent's blogs that are either ahead or behind me in the grieving process. For lack of something to say here myself, I'm going to highlight some of my favorite entries/efforts here. Check them out if you can. Or save them for viewing later. They all hold inspiration, truth and hope in their words and pictures.

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The very personal (and moving) story surrounding the death and cremation of their child, Lucas, who passed away from neuroblastoma on 10/16/07.

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Coming from Leigh Saxon, who along with her husband Terrill and brothers Jack and Whit, lost their Paul to neuroblastoma on 7/14/07, what it's like to continue to function "normally" while dealing with the loss of a child.

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The Dolling family lost their Spencer on 5/21/08. More than any other family I've known (even if only virtually), they epitomize Living Life to the Max. Here is the blog post they wrote a few weeks before Spencer died. And here is their latest adventure.

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Erin passed away less than six months ago on 4/9/09. Erin's mom Vickie Buenger, who raised probably one of the female gender's best hopes for President of the United States, introduced a US Congressman and friend of Erin's at a recent town hall meeting on health care. This is what she said.

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So many other NB angel parents remain in the fight, but perhaps aren't the most wordy of bloggers like myself. But I want to take a moment on this day, the day before Childhood Cancer Awareness month begins, to acknowledge them and their efforts. It would be easy for them and for Melissa and me, to just walk away from the whole dang thing and simply live. To be honest, some may think that we are simply grieving by continuing to fight for a cure.... that this is therapeutic for us. I wish it were that simple. Believe me, sometimes it is, and sometimes it isn't. There are only 24 hours in a day. Most all angel parents are still parents to other kids that need time, attention, love, and a roof over their head. This work takes away from hobbies, vacations, and families. It is not without reward, but it is not without costs either. To these angel parents, I say simply, "thank you."

• Mayank Gala (son Ishan): IshanGala.org
• Scott Kennedy (son Hazen) and John London (daughter Penelope): KidCancer.org
• Paul Brunskow (daughter Eden): MagicWater.org
• Bob Piniewski (son AJ): People Against Childhood Cancer (PAC2) curechildhoodcancer.ning.com
• Mikey Johnson (son Cody): Codys-crew.org

There are many other foundations run by many exceptional angel parents and I do not mean to imply that their work is less important or otherwise not worthy of mention by their lack of inclusion in my list. Those above are merely the ones where I am personally familiar with the parents involved.

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So many of our days feel strange because Max is not with us. No matter what we're doing - whether we're having fun (we do), or feeling melancholy (we do) - the feeling is there. Something's missing. It's that one-armed thing that Leigh writes about. Today, we are just hanging out. Hannah starts 5th grade today at a new school (5-6 only), and we will be dropping her off together as a family. She is somewhat nervous but mostly about homework. Max would have been starting 3rd grade. So many "I wonders" around this missed milestone: I wonder who his teacher would have been; I wonder which kids would have been in his class; I wonder how he'd be doing in math, and what he would be writing about. It will feel strange not to show up at Solana Highlands on this first day of school.

Because our summer update post was thin on pictures, here are some highlights from this summer with a few of Max thrown in just for fun.

Starting out with Max's 7th birthday...






We got him a Wii. We made him open the games first, as he didn't know/expect a Wii. So he got a bunch of games but to him, they were for the "wrong game system."



Finally, when he opened the big box, it all made sense to him and he laughed so hard, and of course was very excited too!





This summer we've made it to the beach a lot in the past few weeks. Before August, it's been quite frankly, not very nice beach weather. The past two weeks have been pretty, pretty good however, with the water temp around 70 and the air at least that warm if not warmer.



Nic and Hannah are slowly learning to play together, well, Hannah is learning to tolerate playing with Nic so that Nic has someone to play with until we can scare him up some friends.

This summer, we also...



Did the 4th of July bike parade thing...



Hung out around cool airplanes...



Went to the park after Pizza Port dinner...



Explored the trails below our house a bit more...



Saw Hannah off to two weeks (non-consecutive) of sleep-away camp...



Stumbled across some dinosaurs at the Wild Animal Park...



And missed...



Our Max everyday...



Thank you all for your messages today. We feel your love for us and Max. We know he remains strong in your memories, as he is in ours.

Andy & Melis

Max Weekend

Intend on having a very MAX weekend... Conan O'Brien, whom we never stay up to watch, started the weekend out just right...

Just saw Nigel Marven on the Tonight Show. Came out with a Monitor Lizard, Nigel bleeding from neck where the beast had scratched him on the way out. The Monitor lizard was a Max favorite as they ate "wilderbeets". Max used to watch DVD's from the playroom featuring Nigel in prehistoric times. Favorite show ever as there was real person interacting with the dinos.

Tears and smiles. So many memories.

Maxapalooza cancelled

Dear Friends and Fans, Supporters and Sponsors:

It is with some sadness that we have made the difficult decision to cancel Maxapalooza. We arrived at our decision over the past 48 hours after much analysis, discussion and reflection amongst ourselves, our organizing committee, and top sponsors.

Simply put, Maxapalooza was going to be an amazing event experience, but the projected revenue from attendance and donations, even with corporate sponsors helping to cover some of the costs of producing the event, was not enough. The last thing we wanted to do was create a great event which raised no money for pediatric cancer research.

If you purchased a ticket, the full price of your tickets will be refunded to you. Look for an email from either PayPal or Google Checkout to serve as confirmation of your refund.

Max's Ring of Fire remains as committed as ever to our mission of helping fund important research to find a cure for neuroblastoma. Our mission and commitment to it remain unchanged. You can keep up-to-date on what we'll be doing next by visiting us at MaxsRingOfFire.org or by becoming a fan of MROF on Facebook.

If you have any questions or concerns, or would simply like to talk to us further about our decision and the factors involved, please don't hesitate to e-mail us or call: 858-342-1432.

With hope for a cure,

Melissa & Andy Mikulak, Max's mom and dad and
founders, Max's Ring of Fire, Inc.

Summer Update

Hannah starts school in one week. 5th grade. Nicky will be going to pre-K (4 yr old preschool) this year. Max has been gone for almost a whole year.
I’m not sure when the feeling of loss is supposed to get easier, but lately it’s been so intense. The numbness that had hold of me for so long is completely gone. What’s really sad is that Max not being here is not so blaringly obvious. So when it hits it hurts all the more. Almost guilt-like for not being more aware. Hard to explain.

Nicky’s been doing lot of little things that remind me of Max. Actions, movements, sayings. It feels good to see a little bit of Max come out of him, but it makes me cry just the same. As Nicky grows up he’ll surpass Max’s ‘forever seven’ and then there’ll be nothing to imitate. Every night at bedtime he still has the same routine: read a story in Max’s bed, sing a song, then talk about Max. Nicky is so lonely for a boy to play with. He came to me this morning when he woke up and sadly said, “Mommy, I don’t have any friends.” I almost cried, because it’s true and it’s my fault. How could I have let the entire summer go by without setting up one single playdate for my son? He needs a boy companion so badly and I’ve done nothing but fail him.

Hannah is still “skip-to-maloo.” We check in with her all the time, but she seems just fine. She never brings Max up in a conversation, but always partakes when he’s talked about. I wonder if her ability to cope has something to do with sleeping in their room every night, with all the planes, Max’s bed, his cloths in the closet and dresser… she doesn’t want any of it moved or tampered with. Two weeks ago she had run out of underwear, so she reached in his underwear drawer, pulled out a pair of spiderman tighty-whitey’s and was all set. Hannah is an amazing child.

For vacation this summer we finally made it back to Legoland. Max’s last trip was with Andy and his best friend Luke. Andy couldn’t bear to go there for along time. We all had fun and remembered all of Max’s favorite rides and exhibits. It was a good day for all of us. Then we flew to the destination for all southern Californian’s trying to escape the beaches, waves and sand: South Dakota. ;-) My mom’s family reunion. We stayed in a beautiful cabin on a lake for a week. Hannah & Nicky fished from the shore and docks (not even a nibble, but that didn’t seem to deter them). We bought fireworks, made smore’s, drove through swarms of huge mosquitoes, played in my cousin Mark’s bait barn (whole essay required to explain this to anyone not from the Midwest)… and Andy and I missed our second child.

The bridge that was Max is still sorely missed in our house. Hannah and Nicky just don’t have a connection without him it seems. Hannah is so pre-teen and Nicky is just a little boy who doesn’t understand why his sister doesn’t want to play with him all the time. (Again, this makes me hit myself in the head because I sucked 100% at getting Nicky a friend.)

There is a lot of pain in our house. Andy and I are stinging from the loss of Max.

What I Miss Most

Most of all, I miss having three behinds around.

Splash for Cure - Charlottesville, NC

If any of our readers is located - or has friends - in Charlottesville, NC - we invite you to attend this fundraiser hosted by one of our NB Alliance partners, the Ishan Gala Foundation.

Splash for a Cure: Family Fun for a Cause in Charlottesville, VA
Charlottesville Couple Honor Son with First Annual Fundraiser for the Ishan Gala Foundation, Raising Money to Fight Deadly Childhood Cancer, Neuroblastoma

Say goodbye to summer with slip sliding fun, live music by Alex Mejias, great food and fabulous prizes at the first ever Splash for a Cure event at the ACAC Waterpark on August 29 from 5-9 PM. more...