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Posted 2018-07-17T05:42:31Z

My Hero's Journey

I often say that Neal and the boys are my heroes… and this is my truth. They have had to endure things I cannot even fathom as part of their battles with life-threatening illnesses, and I am constantly impressed by their will to overcome the often daunting challenges that life has placed in front of them.

 

Last week Jeremy participated in The Hero’s Journey program at the Hole in the Wall Gang Camp in CT. For those not familiar, this camp was founded by Paul Newman in his hometown of Ashford, CT, and serves children with cancer, immune disorders (like our 3 boys), hemophilia, sickle cell anemia, mitochondrial disease, HIV and other life-threatening illnesses. It is an incredible place where kids can feel normal for a week of summer camp among peers in similar situations, while being cared for by some of the most amazing counselors, nurses and camp staff ever.

 

Our boys have been fortunate to attend Hole in the Wall for several years, and when the camper turns 16, they have a special adventure planned for them called the “Hero’s Journey” based on Joseph Campbell’s famous monomyth. Most of you may have heard of the Hero’s Journey and how it fits many of our most favorite story characters as far back as Ulysses, and as modern and popular as Luke Skywalker and Harry Potter.

 

For me, a hero is as Christoper Reeve described: “I think a hero is an ordinary individual who finds strength to persevere in spite of overwhelming obstacles.”

 

Certainly… Neal is my hero. He is a hero to his boys who I know are watching and learning from him. And I know he is a hero to many of you as well. I don’t blame you!  Since Jeremy returned from his camp experience, I’ve been thinking a lot about my heroes, and specifically about Neal and his Hero’s Journey. It’s incredible how closely he has followed that path.

 

Propelled on a reluctant journey with a surprise diagnosis of stage IV cancer, our hero was given a dire prognosis from the very beginning of his journey. He was shocked, and perhaps in a bit of denial, but reluctantly decided to fight with all of the weapons made available to him. He sought out experts and learned from them, and eventually he chose the path with the greatest risk, but also the greatest reward. MORE TIME. And he got more time…3 1/2 years, when he was initially told 6 months... more time to make memories and share experiences with his loved ones. And then the cancer returned stronger than before and challenged him once again. This time the cancer was immune to the weapons, but the hero never gave up. Even when he was given mere weeks to live, he found the will to go on. Even when he could no longer eat… he endured. He knew he could not control the cancer, but he would not go quietly, and was determined to squeeze every single day possible with his family. Some days he fought for every hour until he realized he was ready to move on. He had fought the beast and while some might think that he was losing the battle, he had actually won, because he was the one who decided when he was ready to take the next step. He had made many sacrifices along the way to stay with his family… he had given up food and mobility and freedom. But he never gave up his determination to live aggressively. And so, now that he has finally decided that his journey is complete, he will take the time to rest in comfort as any warrior does after a fierce battle, knowing that he fought the good fight.

 

And this is where our hero (my hero) is today. Today by his own request Neal was transferred back to the hospice house for a well deserved rest along the final leg of his journey. We’re not certain how long he will rest before moving on, but he is and will always remain my hero.

Since Neal’s awake time is very precious to us right now, we are asking that visitors be limited to immediate family only at this time. We hope you understand.

 

Thank you so much to all of our family and friends for their continued support and prayers. You have made some of our hardest times bearable with your love and kindness. Thank you seems so inadequate, but it is most sincerely heartfelt by all of us.

 

With all my love,

Michelle

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Comments (15)

  • Mark
    Mark

    Something that I could never imagine or fathom. I hope for the best for all of you. Neal sounds like a strong/ great man, and you're a strong woman. I don't really know what to say other than I hope that the rest of your time spent together is full of great and fond memories. Neal def sounds like a HERO to me. Love to you both and your boys

    one year ago · Reply
  • Fern mancuso
    Fern mancuso

    Michelle, My thoughts & prayers are with you & your family at this most difficult time in your life. Fern Mancuso

    one year ago · Reply
  • Mindy Standley
    Mindy Standley

    sending lots of loving thoughts your way - Mindy

    one year ago · Reply
  • Anne Donahue-Boddy
    Anne Donahue-Boddy

    Yes, a hero indeed. The few times we met he was welcoming and funny, and just a, "good guy". I can't imagine your current journey. We send out positive thoughts and prayers to all. Anne and The Boys

    one year ago · Reply
  • Paula Berger
    Paula Berger

    Much love to all of you. -- Paula

    one year ago · Reply
  • Meg and Ben Silver
    Meg and Ben Silver

    Love t all of you. You are all in our thoughts and prayers.

    one year ago · Reply
  • Mindy Holmes
    Mindy Holmes

    Hugs and love

    one year ago · Reply
  • Christina Hill
    Christina Hill

    Michelle, Neal has most definitely dealt with his journey heroically. Love, strength and prayers to you all. xoxo

    one year ago · Reply
  • Lilia
    Lilia

    You are all amazing and you are all always in our thoughts and prayers.

    one year ago · Reply
  • Kim Mager
    Kim Mager

    Michelle, our love and prayers are with you Neal and the boys. You are all heroes and I wish comfort and peace in these horribly difficult times.

    one year ago · Reply
  • Brooke Smith
    Brooke Smith

    You are all my heroes! Hugs & prayers for peace & comfort, for your entire family!

    one year ago · Reply
  • Katherine Antilla
    Katherine Antilla

    Everyone in your family is a hero! My thoughts and prayers continue to be with all of you.

    one year ago · Reply
  • Amy Nocton
    Amy Nocton

    Ulysses had his unwavering Penelope, but you have surpassed even her in your love, devotion and loyalty to your hero and your boys. Elsa leaves for the Hole in the Wall next Monday. I know that Jeremy and the other Gala children will be in her heart and on her mind while she is there. Your family has touched us all immensely. Reading your updates, having some time with Neal at camp, seeing our children together...all incredible gifts. It is I who thank you. Thank you for inviting us in to your story. We wish you all love, serenity, and peace. Sending some more Hole in the Wall love your way.

    one year ago · Reply
  • Gwen Gulick
    Gwen Gulick

    Sending our love and support to your whole family -- you are warriors all. We are with you in spirit. And wishing peace to Neal.

    one year ago · Reply
  • Wendi Dellemonico
    Wendi Dellemonico

    Sending love and peace to you all. You are always in our thoughts and prayers.

    one year ago · Reply