The Power of a Parent’s Words

The heart of a grieving parent is never healed. We don’t know how we can live with such a tragedy until we are in it. So often we exist in a state of wishing to be happy and drowning in sorrow because of our loss.

Justinphoto (1)
Justin-a warrior who we lost 1 year ago today.

Today marked one year since a beautiful and courageous young man lost his life to cancer. Justin’s mom is feeling the pain I felt nine years ago on Nick’s one year angelversary. We can’t take the pain away, but can only let her feel our love and comfort. Everyone grieves differently, but a parent’s grief is soul deep.

It was appropriate that today I shared my book about Nick’s journey at my book signing. Even as I feel gratitude for everyone who came and spoke with me, I feel sad, because my number one fan isn’t right here with me.

When I started Shimmer’s Eggs, it was a creative memoir about my boys’ lives. After Nick passed, writing this book was a cathartic journey for me to understand what it meant to no longer have Nick. Losing him changed the ending, and I would never have written the same book if he had lived.

I know this book helps others. It’s difficult to feel joy when there is so much pain. But as Justin’s mom wrote today, she has much to do and knows her son waits for her. Her words helped me tremendously today, even as she is hurting.

As much as I miss my boy, I also have much to do. I have hope and love to share. I know that whatever choices I make, and however I choose to help people, Nick would approve, because it comes from my heart.

Nick t-shirt
Nick, 2008

Thank you to everyone who holds me up and supports my mission and message. It keeps Nick’s spirit alive just as Justin’s amazing mother shares his beautiful spirit. They both are missed today and always.

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.

Muscle Memory

I couldn’t let the day pass without sharing a story about childhood cancer awareness month. Grief is like muscle memory. Your body remembers as easily as the change in seasons. As fall comes, we begin to crave hot apple cider and donuts, the crisp air, and early nights.

This is the time when my most damaged muscle pines for what has been lost. That muscle memory kicks right in at the beginning of September. The first day that Stephen had to go to school by himself without his big brother. Their first birthdays separated, the first Halloween dressing up on his own, the loss of innocence, the pain that seeps back in as stealthily as the leaves begin to change.

Despite all we do to bring about change, it sometimes feels that not enough is being done. No matter how much good I am surrounded with and all the support and love that I am given, my heart still skips and flutters with loss when I think about Nick.

Like so many other families, cancer took away one of my biggest joys, one of my greatest purposes in life. And it just sucks.

There are times when muscle memory is a good thing. For anyone who has lost a child, every season and every anniversary brings the heartache back.

September is Childhood Cancer Awareness Month, but every day I don’t have my son. So every day we should work like hell to find a cure, give comfort, show love, and make a difference for a child battling cancer or any type of life threatening illness. That is the kind of muscle memory everyone should have.

family photo 2008
Our family September 2008.

Keep Breathing–My Yoga Epiphany

I went to a yoga class tonight with my friend, Karen. She has been encouraging me to go, because I have been a slug for months. My sluggishness has led to high cholesterol, elevated blood pressure, and weight gain. I haven’t written like I usually do. I feel stuck. Every fall I get like this and it feels harder and harder to get out of this melancholic rut. Here it is the beginning of the year and I’m still struggling.

In the beginning of class, the instructor, whose name is Kayla, asked us to think of an intention. Mine was health and healing. The class was physically hard for me. At one point I had to bend my right knee and on an inhale lift my left leg straight up toward the ceiling. On the exhale I crossed my left foot behind and past my right and pressed the ball of my left foot on the floor.

Kayla said to not give up, to breathe louder through the pain and our thoughts. She said to stomp out whatever is stopping us in any area of our lives. I thought about what is stopping me from living to my full potential.


That one word sprung up in my mind, grasped my heart and took my breath away.  But then I inhaled, refusing to give up. When I exhaled, I stomped grief into the floor. I did it over and over and over and over again. It was emotionally exhausting. The physical pain of doing this exercise was nothing compared to the mental anguish of my grief.

At the end of class I lay on the mat with a cool cloth over my eyes. I thought about how grief controlled my life and how I didn’t want that. The pain of missing Nick paralyzes me. When grief doesn’t overpower me, I am able to follow the path of my soul. I live with clarity, joy and empowerment. My words are freed.

I took a deep breath.

The thought that I wished Nick was here flitted into my mind bombarding me with pain.

My chest tightened.

Then I thought about how I love Stephen for who he is, not for who I wish him to be. With Nick I only wish he was here physically. I asked myself, “Why aren’t I loving him as he is right now?”

My chest tightened even more.

If I loved Nick for who he is, then he could live in that love and fulfill his journey instead of trying to be who I want him to be. Isn’t that what happens with our children sometimes? We push them to do and be what we think is best. Sometimes we do know, but with the greater picture only they can know. We should love them despite where their journey leads.

Of course I have expectations of my children. I expect Stephen to be a good person and make the world a better place. I expect Nick to travel wherever his spirit may lead him, but send me signs that he is still with me. But don’t they expect me to take care of myself so I can be with them and stay connected to them no matter where they are?

Chest getting tighter.

My job, my mission as their mother is to help them fulfill their soul’s journey and to love them unconditionally.

With these amazing thoughts came a mantra:

I will not be controlled by my grief.
I follow my soul’s path.
I love my children for who they are, not who I wish them to be.
I will help them with their soul’s journey.

My chest is still tight, so I repeat it again and my chest starts to loosen.

I repeat it again, stronger in my mind.


One more time I say the words, feeling them deep in my soul, and I can breathe. I feel lighter.

I am energized and will repeat this mantra with daily deep breathes in the hope that it will help me with my grief. The pain of missing my child is and always will be there, but only I can choose how I will live with it.

Thank you Karen. Keep bugging me.

A Parent’s Love Knows no Limits

Nick with me when he was 11 years old.  Stephen was the photographer and kept cutting off our heads! Glad he got this one.

On the one year anniversary of Travyon Martin’s death, I watched his parents talk about missing their child and their continuous fight for justice.  His mother, Sybrina Fulton explained that she had one child in Heaven and one on earth and she is trying to do the best for both of them. 

It doesn’t matter how your child dies or how old they are when they die, it’s a loss that you can never get over.  Losing a child isn’t something to get over like a cold, it’s learning how to live with your child in a different way.  Like Sybrina, I have said that I have an earth son and a spirit son and I make sure I spend time with both of them. 

I enjoy watching the funny videos that Stephen wants me to watch or listen to the latest song he has downloaded on Itunes.  My husband and I travel extensively with him for the soccer team he plays on.  We talk about Nick and I show Stephen photos that I have of them growing up.  That time with him is precious and I’m blessed to have him in my life.

My husband and I enjoy watching Stephen play at soccer tournaments.

Since I don’t have Nick in the ‘physical’ sense, it’s obviously harder to know that I’m connecting with him.  The best way I do this is by writing to him.  I mainly write about our family, especially his little brother and I ask Nick to keep a special eye out for Stephen.  Nick often comes to me in my dreams and he sends messages for me or for his close friends and family.  Even his close friends have dreamt of him and I know that helps to ease the sadness of missing him.  I keep ‘open’ to signs that Nick may send letting me know that he is all right or close by. Having that faith that he is connected to me helps on the days when the grief storms flood my world.

As Trayvon’s parents fight to find justice for their son’s death by changing laws on gun control and self-defense, Luke and I continue to help other children battle cancer or live a fulfilling life while they are in treatment.  Nothing can change the world quicker than a parent who has lost a child and the love parents have for their children is the most powerful motivator.  But even if we give our hearts toward the cause that took our children, sometimes justice or healing doesn’t come quick enough and that can tear you apart. But we continue because a parent’s love knows no limits or boundaries.

My wish for Sybrina Fulton and Tracey Martin and every other parent who has lost a child is that you find a way to continue that relationship with your spirit child, enjoy the blessing of the children you may have with you still on earth, and know that even the smallest action on your part is making another child’s life better.  May this give you a sense of peace when change is slow and your heart is extra heavy.

I Have Known

I have known pain deep enough to gash my skin to the bone and leave an aching residue of grief torn malaise. I have known loss that chills my soul so that warmth is as unknown as happiness. I feel the ache in different places, but the vast hole in my heart continues to crumble outward with the fear that my whole body will fall away into oblivion. I fear that there is nothing left to hang on to.

Then I see him. A little boy whose smile captured me from the moment its brilliance lit upon my soul. The goodness his spirit evokes and the effervescence of his soul bubbles up so that my chasm of emptiness fills. It overflows in hope and I remember that I have known the greatest love.

Healing Kids by Having Fun

Have you ever met a child who didn’t want to have fun?  It’s a known fact that kids like to run around, play games, wrestle, dress up, and be with other kids having a good time.  But what if those kids are young adults and you are a 5-year-old with cancer?

That was the scene yesterday at The Melodies Center’s clinic at Albany Med.  Five young adults, Emily, Alyssia, Brandon, Sarah, and Becca from Nick’s Round Table visited children while they waited for their blood work or to get treatment.  Sweet Chloe, only three years old was very shy, but soon sidled up next to Emily, who helped her color some wooden dolls and decorate them with glitter and jewels.  Sarah and Becca met Piper who they had given a comfort bag to and they gave her a craft to do when she felt like it.  Brandon played some video games with a boy, which is a fantastic distraction. 

Then there was Joshua.  He flew into the clinic playroom like a boy on a mission.  He’s five years old and usually plays video games when he arrives, his mom said. But this time he saw five big kids sitting around a table with various arts and crafts.  Joshua picked a model car and Alyssia quickly set him up.  Joshua painted the car a brilliant blue, mixed with some yellow.  Then he made a necklace. When the nurse called him to get his vitals, Joshua sprinted out of the room and rushed back when he was done. He was having fun with these kids and didn’t want to miss a minute.

Healing Kids by Having Fun.  This concept is not an advanced medical breakthrough or a new chemo drug that will attack a specific cancer.  It’s basic human interaction. It’s about giving these children  something to look forward to–a distraction from the poking and prodding that has taken over their lives.  When you are having fun, you aren’t thinking about cancer and how it has changed your life.

It also opened the young adults’ eyes.  Each one there lost a close friend to cancer. They have experienced the pain and grief.  Now they see how bringing some fun and laughter to a child can help them heal or get them through a particularly difficult day.  It makes a difference and I’m amazed that they put themselves out there every day.

Sometimes it takes a miracle to save a child’s life.  Sometimes it’s laughter with just the right amount of fun.

Special shout out to Zach! It was wonderful seeing you and your mom and to Parker and his mom from Saratoga who I had the pleasure of meeting yesterday. 

Keep Fighting and may laughter and fun get you through each day.