11/30/2008

"Normal"

We continue to experience the full blast of pediatric cancer - that is, the extreme highs and lows that come with fighting neuroblastoma, and now that the battle is over, dealing with the aftermath of our loss.

On the outside most people would look at me and think that I'm carrying on quite well. Not knowing what "normal" is in these circumstances, I'm not sure if they're right or wrong. My moods shift quickly from extreme anger at what Max went through and our loss, and his loss, due to a too-early death, to deep sadness at the pain, terror, isolation and exclusion he must have felt at times, to bursts of productive and creative energy where I actually get things done that help me to deal emotionally with the anger and sadness (you might notice that range of emotions in this post, in fact).

We continue to be amazed at the outpouring of goodwill and good deeds which come to us through the kindness of both friends (old and new) and strangers.

Erika Jessop is a wonderful artist whom we've never met. Commissioned as a gift from Max's photographer Deb, she painted for us (below) this wonderful, caring portrait of him in her inimitable style. Thank you Deb, thank you Erika, we have not yet found a place to hang this picture but it will be in a very important location, to be sure!



Life goes on for us. In an upcoming post, I'll update on what I've been doing to continue the fight against neuroblastoma. I think Max would approve, and it keeps me from going crazy.

We spent Thanksgiving away from our house this year. We host Thanksgiving usually, but decided we needed a pass on tradition, so we joined Melissa's family at Matt and Jenee's desert house outside of Yuma. The weather was beautiful and the kids had a blast with their cousins. Little Nicky is growing into quite a little man which of course is bittersweet. He is just about now at the age when Max was diagnosed. He misses his brother a lot - we all do of course - and asks the most touchingly sad questions, such as today when he asked, "when is Max coming back?" as if he's in heaven on vacation. We try as much as possible to get the idea of permanence across but also speak freely of Max and 'signs' from him which the kids especially find comforting. We strive to find positive things to focus on everyday and are thankful we have two beautiful, healthy children, along with our families, a community, and a network of friends that support us with their love and friendship.


Nic looking very comfortable on a mini-bike.


Hannah pulling g's


Nic getting inspired to face off against Will Lacey at some NASCAR track in the future.

11/25/2008

Kitchen Table

Our kitchen table: where all the action is.

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It's been three months already since Maxi-boy earned his wings. I don't know where I am with this reality. Some parents told me they were numb for the first year. I think that's a good definition. I haven't cried a lot - here and there, yes - but not what I would have thought. Last week a friend brought over a book for me, Tear Soup. (Thank you, Brenda. I love it.) It's a picture book, like what you'd read to your kids, but it's for adults and it's a recipe for grieving. I stood in the kitchen reading it and found tears streaming down my face. It was a relief to find something to help release my heartache over the loss of our beautiful boy. I've been thinking about Max more and more just recently. Seeing these videos and hearing his little voice and watching this actions... I just can't get enough. I guess my "missing" him has finally started. Thank goodness. It's not a bad feeling... this pain. It's necessary. It's welcome. I want to embrace it and have a good cry.

11/21/2008

Magic Kingdom



You are magical, my boy. I miss you so much. xoxo daddy.

11/15/2008

pancakes-snowy-disney

Another look at Max the Monday before he passed away (six days). Doesn't he look great helping with those pancakes? Also featured on this snippet is Max playing his favorite computer game, Snowy the Bear (game courtesy Mrs. Sturt!), and some video of Max at Disneyland this summer. Recognize those rides? The old school rides are still the best as you can see by Max's smile.

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11/14/2008

Birthdays

This video is about 6 minutes long and looks at Max's birthdays.

Forever 7.

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Popsicles

This is a video from August 24, one week before Max died. It is a video from the post when Andy wrote about the fact that Max was going to die. To this day we still can't believe that he would leave us so quickly, just 7 days after this video was shot.


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11/02/2008

Hollow



We miss Max terribly, more so with every day that passes with him not around us. As the first holiday without him, and on the two month anniversary of his leaving us, October 31, 2008 was a tough day. On Halloween night, Nicky decided to chuck the fireman outfit he picked out and firmly settled on being a, "s-s-s-s-s-sooooooooooper, s-s-s-s-s-soooperhero." He has a slight studder which we believe is just temporary and is actually fading away slowly... his brain just seems to work quicker than his mouth, which is better than the other way around, we think.

Unfortunately, we didn't get a photo of Hannah this year, but she was a kittycat, and a very cute one at that. (Edit - we did!)

I had dinner on Wednesday with John London (Penelope) and Scott Kennedy (Hazen) in NYC, and yesterday, Melissa and I had lunch with the Bruskows (Eden). It was good to be able to connect with some other NB angel parents, though it seems grim to say its good to meet with other parents whose children have also died from neuroblastoma.

I had ambitions for a much longer post, but seem to have lost my muse and so will close for now. Thanks to all for your continued support and comments. It helps to know that most if not all of you are still there.