Catch up

Well, we're overdue for a post. Neither of us has felt like posting lately. For me (Andy), the reasons are quite simple. What can I say that hasn't already been said, or that isn't painfully obvious? The pain of missing Max grows more and more every day - I clearly didn't feel this way in the weeks after his death. Now, the shock and the sharp pain is gone, replaced by a dull, aching kind of pain. The pain that comes with the realization that what I'm dealing with is permanent (yes, logically I knew that when he died, but emotionally I didn't comprehend forever).

We continue to live, we might even thrive someday. But we will never be the same.

Leigh Saxon lost her little son Paul a little more than a year before Max joined him in heaven. Paul was treated in Vermont also by Dr. Sholler. In fact, Paul was right before (patient #1) or right after (patient #3) Max on the nifurtimox study which first introduced us to the wonderful Dr. Sholler and all the good people at UVM. Back to Paul... er Leigh. She writes beautiful essays. She started a blog to help write down her thoughts and feelings as she mourns. She recently wrote a post that explains perfectly what I'm going through right now. Thanks, Leigh ;)

Part of what has been haunting me lately are bittersweet memories of last January and February 2008. Looking back, it truly was the calm before the storm then. In some way, I think we knew that we were running out of time. And not that we gave up, but appreciated the gift that each good moment together was. It's hard to explain and put words to it, but the relationship you have with your terminally ill child is so intense, even when outwardly it doesn't appear to be any different. In a strange way, I miss that intensity but don't need the cirumstances that would allow me to have that same intensity with Nic or Hannah.

Since we haven't posted a real update since before Christmas, here are some highlights from Tahoe.
It snowed.
Then it snowed more.
Then it snowed even more.
Then it stopped for a day, and then started again.

Hannah and Nic had a blast. We like to think that Max really delivered for his siblings, guaranteeing lots of snow for them.

Nic, Hannah and "Max" (that'd be the stuffed Bruce the shark from Finding Nemo - Bruce is our Max stand-in for photos when we can add him).

The lovely tree and living room of our cabin at Tahoe.

This is the road right in front of our cabin. Looks pretty unnavigatable, right?

Morning light on December 26th.

Interstate 80 on December 26th, heading into Truckee to grab breakfast.

We had plans for a much more spectacular shot underneath a snow-covered cherry or crabapple tree on the sidewalk in Truckee, but Nic was throwing a fit and would only calm down for a picture by a window. It was extremely cold this morning, about 1 degree. In the sun it was okay. In the shade you got cold quick!

On the way home, we stopped in gold country to check out Sutter's Mill where gold was discovered in 1849 (4th graders in California study the gold rush as part of their California history). It was a very nice state park set-up. Later, we stopped for the night in Sutter Creek and had a wonderful dinner and ice cream floats at a true soda fountain. Hannah and I were supposed to go on a real mine tour but at the last minute Hannah wanted "off" the tour. I can't blame her. It was kinda creepy.

Sometimes I feel like moving to another state where the price of living is lower and I could endulge in my dream of being a shepherd. And then we come back from epic snow in Tahoe and find ourselves the next day at the beach in Del Mar making sand angels on a glorious December winter day. And then I don't feel like moving anymore.

Hannah paying homage to Max in front of his favorite "Mig-killer," the awesome F-4 Phantom on the USS Midway.

Soon, we'll update you on things we've been doing to:
  • Help find a cure for neuroblastoma (by starting a new foundation to help Dr. Sholler with her program at UVM)
  • Honor and remember Max (by creating Maxapalooza - a fundraising event slated for Fall)
Thanks for checking up on us, and most importantly, thanks for remembering Max.


Bree said...

Thank you for your post Andy. I love seeing the pictures of you guys and I really like the one of Max with his glasses. You guys did and do live your lives to the Max and that continues to be an inspiration to me. I just cannot help but imagine Max with his sweet innocent smile watching the three people he loves most.

Anonymous said...

andy and melis, it's good to hear from you. i love the photos from tahoe. i was at sloan-kettering last week, picking up sski for an upcoming mibg scan, when i peeked in the playroom. i thought i saw a child who died a few months ago. he was laughing and alive. and i let that moment stay with me for as long as i could. your description of a different kind of intensity with hannah and nicky is incredibly deep and painful to read. i wish beautiful beach days and snow and shepherding and love for all of you.
i miss your max.
love, mooki
toby's mom

Bree said...

Forgive me guys...the FOUR people he loves most....Daddy, Mommy, Hannah and Nicky!!!

deb schwedhelm photography said...

love you guys!

Unknown said...

thanks for sharing the beautiful words and great stories from the past couple of months. i think of you often.

Anonymous said...

Good to hear from you guys. I hope you will continue to post and let us all know what is going on in your lives. I get worried when anyone goes "offline" for too long!

Anonymous said...

Always remembering Max. You guys are the best and he had you all to himself. Remembering your beautiful family in my prayers. Peace to all of you. The love you gave him is world-wide. He felt it, we all saw it. He is now watching over you like you watched over him. East Coast Friend

Anonymous said...

As always good to see new pics of Max...although they made me cry. I've been feeling the loss of Max rather deeply lately. And in my own small way, I think it's like you described. I miss the intensity you spoke of with Max where every smile, every laugh, and every tear is amplified and cherished because you know time is so short. People ask me how my year is going. enh.. I feel aimless and purposeless. And now I know why... to have that intensity and then not, is devastating. I feel like a ship adrift on the sea. But now because you so clearly stated it, I also have the words to describe it and the reasons behind it. However, I do know it isn't comparable to what you feel. And don't worry, Max will never be forgotten. xolisa

Anonymous said...

My Lisa has been changed FOREVER....it breaks my heart as her mother to see the sadness in her eyes, and hurt and loss in her heart. I wish I could make it better, but I can't. Lisa will never forget your Max....NEVER!!
You are right Andy that life will never be the same...there will always be a void...a hole...a person missing at the table...an empty chair..but we who have lost someone who we loved and held so tight will never be forgotten by those loving people. The moments of deep hurt come sometimes when we least expect it...that is part of the grief path that none of us want to be on. But what it means to me is that their life had purpose...a meaning...that their life touched people, and they made a difference. Your Max was that kind of person. You were blessed.Thank you for your update...I understood why the space of time in between the posting...but happy to know you are hanging in there....just like Max would want you to do. Sending hugs to all. xo Linny

Anonymous said...

We'll never forget Max and we think of him every day. Our prayers remain with you.
Holly, Steve, Jake and Luke

San Diego Mom said...

Thanks for the update. It was great to see pictures of your escape north. I'm so happy to see Hannah and Nic looking so happy. I guess your fight to keep smiles on your children's faces continues. That must mean grief and emptiness are hitting you in the wee hours, after the kids are peacefully sleeping. Max is remembered up here in the bay area also. A huge lightning just dropped. That must be Max having fun with his light saber.....


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