Calm Before The Storm

11 years ago today, I was a carefree mother of two active boys–ages 12 (Nick) and 10 (Stephen). Summer was upon us and even as Nick struggled with ear infections and unexplained rashes, we looked forward to sun and fun.

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Every summer, we’d write out summer activities on a big poster and check them off as we completed them.

Picking strawberries

Eat at every possible ice cream shop in the area

Swimming at Barney Road

Swim lessons

Bonfires and smores

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That summer was a pivotal one. I had purchased bike locks, because we planned to ride our bikes to the pool, library, and ice cream. Nick would have soon been able to ride on his own, and I wanted to make sure they would be safe.

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We also planned a big trip to Florida. Nick wanted to swim with the dolphins. It was to be our first big vacation in a couple years since buying a new house. Our world was golden. We were happy. We were whole. If I could have captured that moment in a single word it would have been joy.

The next day, July 4, 2008, our world plummeted into shock, disbelief, and pain. Nick was diagnosed with Leukemia. We never used our bikes or those locks. They still hang in the garage. Nick made it to the pool one time and was too ill to swim. We cancelled our trip to Florida–fear shackling us close to home. Our family was split in half with one parent in the hospital and taking Nick to treatment and the other with Stephen.

Four months later Nick passed away. As I sit at his spot in the Jonesville cemetery, I wish for that life back. I mourn for my son and the harsh reality of so many children battling cancer.

I give in to these moments and be with my son. Then I move once again. Back into life as it is now.

Tomorrow we walk in the parade that my boys loved to attend. It’s a reminder of what we lost, but also of how much work is yet to be done.

Our lives have changed. I have learned to focus on what I can control. I couldn’t control the disease that took Nick, but I made sure he knew he was loved forever. I can’t control the fact that 90 children are diagnosed each year just in our area, but I can show compassion and support them through our foundation.

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I can control how I live each day. I take the time to sit and be with my boy, no matter where I am. I embrace the precious moments I have with Stephen. And I forge my path and live my life fully until I see Nick again.

Luke’s Legacy

Everyone has a legacy. As parents we hope our legacy will live through our children.  But as a parent who has lost a child, I have learned that our children create their own legacies and have their own paths.

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Luke Romano’s Legacy lives on, because of the clear vision he had on how he wanted to live his life and how he wanted to be remembered. I am always in awe when our kids with cancer see beyond their illnesses, their fears, their deaths. Luke impressed me with not only his maturity, but his foresight to ask that our families join forces in order to help other kids more effectively as they go through their cancer journey.

Not many adults would look beyond the ego and see the greater good. Luke did and his legacy continues with providing amazing pillows to teens in the comfort bags. The Family Hope Bags are given to newly diagnosed patients so that their parents can focus on their diagnosis and not where their next meal is coming from when their children are suddenly inpatient at the hospital. His legacy continues by providing scholarships to kids to make the world a better place and raise awareness and increase empathy for teens and young adults about the emotional and physical effects of cancer.

I remember Luke today not because this is the day he passed away. I remember Luke today, because he reminds me of all the work that still has to be done. He gives me the strength to keep going, because he would have done the same. His legacy inspires us to never give up and provide support so that kids with cancer can live fulfilling lives the way they want to. So that they can grow their own legacy.

Thinking of you today, Lucas and hoping you and Nick are proud of what we have done in your memories. You continue to guide us.