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.

7 comments:

Randee said...

How I wish there were some great words of wisdom to pass on--in a hundred years the rest of us could never really grasp what you have had to experience in this journey through neurblasoma and beyond. I stand in amazement of how you and Melissa continue on through your saddness and loss--how you continue to look forward with vision and hope; give "normalcy" to Hannah and Nic; show pride in their achievements and scold them when necessary. Through your loss you continue to love and live. The painting is such a joy to look at and remember Max with his favorite things. Continue to look up and you move on. We all love you more than you can know and would do anything to make this burden lighter if we could. Love Annee Ranee

Anonymous said...

What you are doing with your family is normal...loving them and giving them incredible moments that they will always cherish. We all wear a mask from time to time...that normal mask is showing your stength to your two children who need that from you. I applaud you! You are making Max very proud! xo Linny

Anonymous said...

Just wanted to send my love and support...the part about Nicky asking when Max is coming back just broke my heart. Extra prayers for Hannah and Nicky.

I think of Max constantly and view his videos daily. I will always remember Max...for all that he is and will always be.

Shirley
NJ

Leigh William said...

Words fail me. I can't begin to imagine what you are feeling, but I know that it must be difficult to process. Please know that our family prays for you daily. We think of Max so often, and tears still fall when wishing he were still with us.

Noah reminded us this past week on Thanksgiving that at the kindergarten feast, he was so grateful for his friend Max. We still feel this way---all of us.

With love,
Leigh

donna ludwinski said...

Thinking your beautiful family with such a heavy heart--not a day goes by I don't think of Warrior Max--and how terrible it is that he is gone. Your precious children are so very fortunate to have you both as parents...grieving with them and loving them in the extreme.

Much love

Anonymous said...

Wow, it has been too long since I have checked in on Mashed Potatoes...it is odd to check in for something other than Max! But, I LOVE the pictures from Thanksgiving, and am so glad that you are beginning new family traditions. Sweet Max will be with you all no matter where you celebrate. I never stop thinking about "our" sweet boy. I wore my orange"live life to the Max" bracelet during my classroom feast, I could feel his beautiful aura with me. Hugs,and smiles!
Debbie Weitz

Randee said...

We just got your Christmas Card--it's awesome--Merry Christmas, Annee Ranee

Post a Comment