by Megan Roberts, Hero Mom
For some of us, gratitude is as true and as easy as the color of our eyes; for others, like me, gratitude takes work. Daily, sometimes hourly, often moment-to-moment work. And it starts by being present.
My oldest son Declan was diagnosed with cancer when he was just 3 years and 7 months old. I was also mother to Brendan, a toddler, and I was seven months pregnant with my third son, Tommy. A childhood cancer diagnosis could not have been a bigger surprise--or shock. I was prepared for having my hands full with three busy, healthy boys. But my oldest with cancer? A diagnosis I could hardly pronounce and needed Google to help me spell? How was I going to handle this?
At first, my husband, Bill, and I chose to keep the specific diagnosis, primary CNS rhabdomyosarcoma, from our family and friends because we knew from our own internet searches that the news was not often hopeful. We wanted to direct the way people responded to Declan’s diagnosis because he needed only focused, positive, hopeful thoughts reflected back on him. So we chose to limit the information we shared about the diagnosis itself, and instead shared information about how GOOD Declan was feeling and how GOOD it was when we were all home together. We remained present in Declan’s goodness.
Then, Declan took over and he showed us how to be both present and grateful.
The name Declan is of Irish origin and it means ‘full of goodness.’ I learned quickly that Declan and his infinite goodness would direct us through his cancer journey. His curiosity about everything kept him engaged with his oncology nurses, even when the regular needle pokes made him cry. His playful spirit got him up and out of bed quickly after each brain surgery and kept him active and busy throughout his chemo treatments. His joy and his grace were boundless.
Make no mistake: childhood cancer brings its burdens. If we hadn’t followed Declan’s lead, we would have seen his diagnosis as only a burden. But when we focused on Declan’s curiosity, spirit and joy, it became our own. It fueled our family. Being together was the best medicine for Declan, and when we were together, there was no burden. We rejoiced in each new day together. We graciously accepted each prayer, gift and meal delivered to our hearts and our doorstep. We remained present and we were grateful.
Declan died one year after he was diagnosed. And I will tell you, it felt like the light and the spirit of our family died with him. For a long time, it was really hard to find, feel and express gratitude. It was harder still to be present.
This past October, I attended my first bereavement retreat. It was so wonderful; I didn’t want the weekend to end. Six and half years after Declan’s diagnosis and five and half years after his passing, I found my community of deepest comfort. I could be myself, in both grief and joy.
No one stared, no one wondered, no one whispered. Not when I cried and not when I laughed. And that was the freedom that I was most grateful for: to share laughter--tears rolling down the cheeks laughter with the same people I grieved with just moments earlier. No judgment. Pure freedom to just be. My heart felt so good.
Cancer can bring profound hardships and burdens onto a family. No two families receive or carry their child’s diagnosis in the same way. And each family has their own experiences with gratitude. For our family, I am grateful for the grace that came to us with cancer. And it is grace that continues to bring peace to our hearts.
Sometimes gratitude whispers, and you have to push hard against the fear just to touch it. And sometimes gratitude swells so big and so deep inside that it lights up your face and falls out in a mass of tears. However gratitude comes to you today, know that you have the grace in your heart to feel it.
A peaceful, happy Thanksgiving to you.
Megan Roberts is the mom to Declan, Brendan and Tommy and wife to Bill. The Roberts Family are active Hero Ambassadors for ALSF. Megan uses her unique experience to connect with other families, trying to bring grace during hard times. Read more about Declan's goodness here.