for real

Sorry for the lack of substantive updates lately. Neither of us really have a good excuse like, "we were building homes in Tijuana," or, "lobbying Congress for more neuroblastoma funding." Truth is, we've been doing nothing. Not really. We've been busy, really busy. Not busy really doing anything worthy of a blog post however, at least not on a regular basis. I think we're hitting a new phase of mourning.

I haven't read any mourning books so this won't sound very credible but I think we've entered the "holy sh*t this is for real and Max really is gone and we can feel it deep within our bones every minute of every day" period of mourning. On the surface, I think some - maybe most of the people we see on a regular basis - believe we're getting along just fine. And we are, on the surface. We have fun, we go out, we laugh.

We talk about Max. Or we don't.

We're over the "structured" part of mourning where we try to schedule/control how and where we integrate a Max moment into our family's experience.

It just happens. Or it doesn't.

We're not forgetting him, we're likely just becoming used to him being dead and not with us. Don't mistake this for being comfortable with him not being here.

I'm supremely comfortable not fighting cancer every day. It's nice not to have the proverbial gun to your child's head every day with all the stress and anxiety that brings on. But the topical relief of not having the stress of the fight, versus the deep, deep pain of not having him around, and knowing that we'll never see him again on this earth ever again, is much worse.

Three weekends ago I took Nicky to the Miramar Air Show. I hope I'm not pinning all my expectations and lost dreams from my relationship with Max on Nic - trying to have Nic be my stand-in for Max. If you start to see any pictures in this blog of Nicky standing at the top of a skateboard ramp while Tony Hawk does a hand plant in front of him, please email me and tell me to stop. So, back to the air show.

Walking around the tarmac I came across a familiar looking bi-plane. Anyone remember this?

It's the airplane on the left from Max's celebration of life. It was the last airplane owned by Steve McQueen (a Stearman). I felt it was a good sign from Max to come across this since I usually wander around the more exotic airplanes at a show like this.

Nicky has also taken to demonstrating his disapproval in a most obvious manner. I think he didn't like that I wanted to take his picture by the landing gear of this C-5 Galaxy.

Here's another photo with the same pose so that you know I'm not making this up...

Rather than watch the planes Nicky liked to walk through the static displays and most of all, he liked the "army guy" tanks and guns. This is a howitzer of some sort that impressed Nic.

This past Saturday we went and got our pumpkins to the east of us at Bates Nut Farm, or as we have started calling it (thanks to Leo), "Nates Butt Farm" which the kids enjoy for obvious reasons. Yes, we are high-brow in our household. Being that it was a sea of orange at the farm, it was hard not to think about Max (or Macs).

We brought "Max" along with us (in the form of his trusty Bruce shark). I'm sure people think I'm weird carrying around a stuffed animal in the middle of the day, but then I've also shaved my head and people are giving me a wide berth these days anyway so...

I've been thinking a lot lately about our trip to Disneyland last August when Max was really sick and not really in the proper condition for an all-out attack on the Magic Kingdom. The picture below was from our second night I believe when Melis took Hannah and Nicky to see the Fantasmic show that our friends Lisa and Lance got us in to see (from the producer's stand no-less where you are right up in the action)... Max had no desire to go and so he and I were going to hang out in the hotel room, but I persuaded him to visit the Lego store in Downtown Disney for a little side trip. He ended up walking the whole way to the store and back. Coming back he was shuffling away with so much energy, so happy to have procured yet another Star Wars Lego set.

Max kept on saying, in his magical sing-songy voice, "this is the happiest day of my life," and I was almost crying as I knew there weren't likely many more moments like this to have with him.

Miss you...


Kathy said...

Lonely times without your boy-- I'm sorry.

Anonymous said...

Congratulations on choosing to experience your lives with gusto and bravely soldiering on.

"Never, never, never give up."
- Sir Winston Churchill

Bree said...

I miss you too Max.

Anonymous said...

I also miss you very much Max

Anonymous said...

rats! it's only 6:32 am and you've got my make up running down my face! the biplane being at the airshow via Max was very cool! however, tank tops and picking pumpkins shouldn't be a combo...it's fall, you need sweaters to pick pumpkins. missing max, too. thanks for the post. xolisa

donna ludwinski said...

Tears tears and more tears for Max....I can't fathom the pain Melis and Andy and I fear it so dreadfully I can't even enjoy "today" most days....I struggle so much with the concept of knowing too much...knowing what is coming.....

I am so sorry Max is gone. HIs "happiest day of my life" singing just tears my heart out, and does make me cry....

Leigh said...

Andy & Melis,

Those of us who spend our days in your presence know that you are fine on the outside, and still deeply mourning on the inside....because we too, are fine on the outside, and still mourning on the inside. You are not alone. We have not forgotten. We have not moved on to a new cause.

While our mourning is VERY different because you have lost a child, and I have lost a friend and shared in the loss of your child, I think of Max daily - sometimes hourly. He truly changed my life forever. Your family has changed my life forever. The way you managed his care, the way you allowed him and challenged him to continue living life to the Max, the way you have shared your emotions---good and bad---through this blog, has changed my life. The impact of that change does not go away. Some days it may not be as visible, but the impact remains the same.

I feel intense joy and sadness in the same exact moment when I look at Nic in his PJ's smiling from ear to ear, and I see such a strong resemblance of Max not too long ago. I feel an overwhelming sense of loss when I listen to the intonations of Hannah's voice and think that it could be Max speaking to me at that very moment, until I look into the rear view mirror to double check my sanity. I feel frustrated that Max isn't riding in the car "physically" right beside us singing along to the blaring radio, as I know that he hears us and is with us, yet he isn't. And then I am cautious about the music I play, because I want to be sure that it doesn't stir up emotions that I know I, and maybe Hannah, can't deal with in the presence of others.

The constant loss for words, the desire to move forward but the inability to let go, the wanting to hug you but not knowing if that's just too much for that day, the not knowing when and how to ask about how your nights are - or the moments when you are alone and no one is around - it's all there. I can't imagine your grief. I don't want to imagine your grief. It hurts too much as it is.

But do know this....when you need that hug, my arms are open. When you want to say Max's name in every sentence, I am willing to listen. On days when you need space, I will understand. Our friendship is new and fresh, yet very deeply rooted. Death, like birth, connects people on a very intimate level. It brings us to our core, raw being, and once we have experienced that with one another, I truly believe that we are changed as people.

Much, much love -and big hugs today-

Jenee said...


You are NOT weird! You are doing what makes you feel close to Max at the time and thats OK! I wish there was something I could say to ease your & Missy's pain. But I can tell you we love you all and miss Max so much.

<3 Jenee

P.S. I kinda like ur shaved head:)

Thelma said...

I think of Max everyday, sometimes with tears and sometimes with a smile. I too, wish I had special words to comfort you. Just know you are loved and in my prayers.
I will forever miss our Max.

Anonymous said...

As much as we are hurting now, what would life be like if we would never have had Max to share in our lives. There would be no sadness but there would not be the memories, the love, the joy of knowing this special little boy who made such an impact in our lives.
I wish he were still with us but in my heart he will always be close and loved.

Anonymous said...

Andy,I have nothing short of an enormous feeling of pride and
gratitude to have a son who handles the grief of immense
loss with such sensativity. I always feel your mother smiling down on you from her still present energy field.You have within you the very best of her.

Randee said...

Andy and Melissa,

I too think of Max everyday--I see one of his pictures at work or at home and it takes a moment to realize he is gone from our presence. I remember his many expressions and mostly his smiles and I smile. Missing him is more a longing to just see him or hear that wonderful little voice. What I wouldn't give to hear him say "Don't talk to me!" Max has left an impression on so many people and has changed my life more than any other person. He has changed the way I live each day. Thank you Max for everything and thank you Andy and Melissa for continuiing to share your journey with us. I could never imagine what you go through every day not having Max to hold on to. Love you all very much-Annee Ranee

Shannon B. said...

We miss Max too and think about you guys everyday. xo, Shannon & Fam

Anonymous said...

I have the chills writing this and tears in my eyes. I think of your family so often and of your sweet and wonderful boy Max, whom I never got the chance to meet. As a parent, my heart aches for your loss. I just want you to know that there are so many of us out there who still think of you, pray for you, and who will always remember him.

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