Placed Beside Me

Nick was a Lego maniac. He was constantly putting sets together and making his own creations. I have his finished products all over the house.

Today in yoga, the instructor spoke about surrendering in the twist and letting go of what didn’t serve us or was weighing us down. I wasn’t sure what it was I needed to let go, but her words resonated with me.

When I came home prepared to clean, I looked at all the Legos on my bookcase. At the bottom were my journals spilling over onto the floor.

Was it time to get rid of Nick’s Legos? Stephen packed his away before he went to college. One of the difficult parts of losing a child is that I don’t know what Nick would want. He loved technology, video games, reading fantasy. Would he still be into all of that?

It’s the unknown that leads to the what if’s, the second guessing, regrets, and inability to make a decision.

I have learned that what I cannot quite let go, I can place beside me so that it no longer plagues me with sadness. It’s so hard to remove something that was important to my son. The amount of possessions I keep of his doesn’t measure my love for him. That I hold in my heart always. His creations are a reflection of his personality. Sometimes I smile when I see them. Sometimes I cry.

I decided to pack his creations in their form he made into a bin and place them in the basement with all the other toys I have kept of my boys. I took photos first.

Maybe some day I will want to look at them again. Or maybe Stephen’s children will get to know who their Uncle Nick was and make new creations out of his classic Legos.

I don’t know, but I want the choice. And the space I created on that bookshelf? It’s more about the lightness I feel in me, which will allow me to write to and about my boys. Those shelves will hold those journals.

To All the Warriors

Today is 9 years since Nick was diagnosed with cancer. 9 years since his own independence was taken away and then his precious life. 

Contrasts have been a major theme for me this week and it’s been tough. I think about all the children and young adults who are battling cancer right now. Some have just found out that their lives have changed, some are healed, some have relapsed one, two, three times, some are away getting transplants, and some are saying goodbye to their families. 

For each and every one of them, cancer has taken away their freedom to live a happy and fulfilling life. It has yanked them off their path and thrown them into a war. It has irrevocably changed their lives and their families. 

It breaks my heart and is difficult to live with. 

But then I see the joy that our kids find through the tragedy, the loss, and the restrictions. They understand what they can no longer do. But instead of letting it defeat them; instead of allowing cancer to take away their independence, they fight and treasure what they are able to do. 

I have often been impressed by their tenacity, altruism, and determination. I have cried from their loss, but refuse to let it break me, because they don’t give up. 

Today I remember my boy, Luke, Justin, Reese, and all the other children and teens who never gave up, but fell in battle. I honor those who are fighting so hard like Zach, Markel, and everyone else in the throes of their battle. 


Today we remember our freedom, and I thank everyone who keeps us safe. My heart and love goes out to those who fight a different battle every day of their lives. 

Miss you, Nick ❤️

Courage

courage

This is Nick’s band. This morning I felt compelled to take it out of the box I have of his personal items. I usually just look at everything, but today I needed to wear it. Nick wore this band through his entire journey with cancer, and I feel his energy like a cozy blanket.

I think I needed to wear it because no matter where we are in life, it takes courage to live life as we wish. Situations and crises hit us when we least expect it, and when we are forced to change direction, our belief in ourselves can falter.

It takes courage to do so much:

…to express your truth even if others may condemn you for it.

…to leave the world you’ve always known to walk into a new life of cancer treatment.

…to care for those struggling through any type of illness–mental or physical.

…to redefine who you are in the face of tragedy and loss. It can be a physical part of you lost through surgery or chemo. It can be family and friends who can’t understand what you are going through. It can be anything you may not be able to do right now.

…to move forward without the one you love, whether it’s your child, partner, family member, or friend.

…to reach out and ask for help, when you no longer know how to help yourself.

I think Nick was sending me a message today that he wanted to share with everyone battling cancer or any illness that has turned their life upside down.

Be courageous. And when you feel your bravery slipping, surround yourself with those who will hold you up until you can stand on your feet again.

Revel in the power of love and the knowledge that miracles happen every day. Some of those miracles are our beautiful children who chose us to be their parents and guide us in the most mysterious ways.

 

It Takes Courage to Fight Cancer

Ben Mayo

Ben Mayo is currently a Sophomore at Shenendehowa Central School District.  He and my son, Stephen, are in the same grade and both are involved in Nick’s Round Table, the teen advisory board for Nick’s Fight to be Healed Foundation.  Ben and Stephen have had different experiences with cancer.  Ben was diagnosed with Medulloblastoma, a malignant brain tumor, on August 29, 2009, the summer before he entered seventh grade.  Stephen had already lost his older brother Nick to cancer the previous year in October 2008. 

Two teens living within miles of each other in the same grade both dealing with cancer in their own way.  For each of them, it takes courage to get through each day.  Ben’s life was thrown off kilter just as his balance and vision were by this invasive brain tumor.  Ben ended up receiving most of his treatments at Massachusetts General Hospital in Boston.  To completely uproot your life takes courage, and Ben showed how brave he was by going through treatments that were painful, required him to be still for long periods of time, and kept him away from his friends and family for a large part of that treatment.  So many children with cancer have to go away from what they know and love in order to survive.  Their fortitude is incredible.

As a sibling to a cancer patient, Stephen was often left home with my husband while I was with Nick in the hospital at Albany Medical Center.  Even though he wasn’t away from his home, his personal life was disrupted, he lived with the fear of not having his brother back, and unfortunately that fear became a reality.  Stephen was strong for Nick and after Nick died, he found the courage to go back to school, try to adjust to this new life that none of us wanted, and be involved in a foundation that would always remind him that he lost his brother to cancer.

For both Ben and Stephen, being involved in a foundation that supports cancer patients and requires them to speak out takes courage.  Expressing their opinions about cancer so that others can help them bring about change makes them leaders in their teen community, but it also can be scary to put yourself out there where some peers may not understand or want to be involved.  It takes courage to fight cancer, whether personally battling for your life or supporting those with cancer, but it’s imperative to speak up about why we must help other children and raise awareness about this terrible disease. Ben and Stephen’s stories are two of so many.

With young adults who refuse to back down in the face of grief, personal illness, or social pressure, we can beat cancer. It just takes courage and believing that you can make a difference.

Ben drew this in February 2012 for Shenendehowa Central School’s Respect Day
to bring awareness about cancer to his school.

I met Dionna when I brought her a Nick’s Comfort Bag. It was such a pleasure watching her pull each item out with excitement and appreciation. She loved the journal so she could practice her drawing.  The colors of the blanket were perfect and she absolutely loves peach–I gave her peach gum.  We just clicked in the first minutes we met. 

The best part about meeting Dionna was her contagious smile.  She greeted me like I was a long lost friend.  Her vibrant eyes sparkled with hope and promise.  She talked of her family, track, and school.

Cancer will not stand a chance next to this amazing young adult.  Only recently diagnosed, Dionna refuses to let cancer run her life. On her Twitter page she describes herself as Trackie 100% of the time & part time cancer patient.  Cancer will not define her.  She faces it head on so that she can get back to running, her friends, school, and her family.

Amazing kids facing the most daunting challenges.  Dionna is just one example of why Nick’s Fight to be Healed Foundation works all year raising money–so young people like Dionna can enjoy life to the fullest.

Fight to be Healed Dionna! We are fighting for you!

Their Gift to Us

When you hear about a child or teen diagnosed with cancer your first thoughts are shock, fear, and disbelief.  I too felt that way, but have found that what Nick gave us is priceless and will stay with us forever. 

Sense of humor–Even while ill, Nick would entertain us with his very accurate and funny George Bush impersonation.  When he came out of anesthesia, he would crack jokes with the nurses.  We always watched funny movies. In the face of the hardest adversity, laugher brings us together.

Perseverance–A teen understands and knows what will happen during the next round of chemo. They know they will lose their hair, vomit, get mouth sores or be too weak to do what they love.  But they do it.  They persist in the dream to be cancer free. Nick persevered even when the cancer was winning.  He did whatever it took to make it to the next round of treatment and sometimes to the next day. Whenever I challenge myself, I think of Nick and all he went through.  I push myself, because he did.  NEVER GIVE UP!

Courage–Fighting cancer is like a war.  Every soldier has to find that courage deep within to enter the battlefield.  Pediatric cancer patients are some of the bravest people I know. Even though I was with Nick just about every day of his illness, I couldn’t fully appreciate his fears or what he was going through.  His brave attitude throughout treatment showed his inner strength.  Through pain and fear, dig deep and find that courage within you.

Sense of humor, Perseverance, Courage: Characteristics that can help us in any area of our life, but it usually takes adversity, illness or tragedy to bring them forth.  Nick and so many other young cancer patients give us these gifts every day.

I hope you will share your stories of how humor, perseverance and courage helped you or your child through a cancer journey.

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