I was getting a divorce the last time I lost my breath while standing still.
The little person I love most in the world is about to turn 9.
He had refused to follow some simple instructions, said something dickheaded, so I sent my only child to his room to think about it for a while and threatened to cancel his upcoming birthday plans if he didn’t leave the door closed.
I’m sure I did it wrong.
He got angry and yelled a bunch of unkind things from behind his door that I’d never heard him say before.
It feels sometimes like he’s all I have. He’s the only person who gets everything I have to give. My entire life literally revolves around his wellbeing and needs.
I hate you, dad, he’d said.
That left a mark.
I’m pretty sure Maria McNamara never said something like that to her parents. And I’m pretty sure her parents—Ed and Megan—never sent her to her room for being a little shit-machine.
Maybe that would have happened at 17. Maybe after dad told her: “You’re not walking out of this house looking like that, young lady,” or after mom told her: “Don’t tell me what I can and can’t do with your phone, Maria. We love you and if we have to read your texts to understand what’s going on in your life and keep you safe, that’s exactly what we’re going to do.”
Probably not, though.Look at that cute freaking face. That’s the face of a future class president, or the girl who won’t let others feel left out and who always stands up for the kids getting picked on, and then credits her parents for instilling good values and setting a great example.
Maria McNamara would be 17 today, enjoying her final high school summer break before senior year. She’d be getting her senior photos taken pretty soon. Maybe she’d have a boyfriend.
Maria died when she was 7.
One day, everything was normal and her parents probably felt frustrated with her and maybe occasionally used frustrated-parent tones with her. And then the next day doctors told them their baby girl had a cancerous brain tumor and would die within a year’s time.
“We knew on that day that our lives had changed forever and that we would never be the same again,” Megan McNamara wrote.
[NOTE: If you want to quit reading or are in a hurry, please at least scroll quickly to the bottom of this post to learn about a child killer we can identify AND do something about.]
I often wonder how much I’m getting wrong as father.
He’s my only child.
I wonder how verbalizing my frustration with certain things he does or doesn’t do might harm him. There’s a happy medium somewhere between not sweating the small stuff and providing adequate parental guidance.
I replay moments in my head and wonder to what extent he maybe feels like I’m too critical of him, or somehow disappointed in him.
I write a blog with a name symbolically rooted in the powerful human desire to feel adequate and accepted—to feel like we’re “enough.” If I foster feelings of inadequacy in my little boy, shame on me. He must always know he’s enough. I hope I can figure out how to always make him feel so.
What if I died today?, I wonder sometimes.
Maybe my heart will stop suddenly in my sleep. Maybe I’ll get T-boned at an intersection by a high-speed driver who never saw the light. Maybe I’ll be in the wrong place at the wrong time and get killed in an armed robbery.
What will my son feel and believe about himself because of these moments?
I don’t know.
But I do know that if I knew today was my last day with him, I certainly wouldn’t be wasting time on anger or sending him to his room.
I know that if I knew today was my last day with my son, he would never feel like I’m being hard on him. He would never feel anything except all of the intense and unconditional love I have for him.
In a life where ANYTHING can and does happen, one wonders how we so easily lose perspective on The Things That Matter.
Whoever you would want to see and talk to. Wherever you would want to be. Whatever activity you would want to be doing. In our final hours.
Those are the things that matter.
How easily we forget.
Little Maria had a brain tumor called a glioma. It is the second-deadliest form of cancer in children.
Her dad and mom, Ed and Megan, searched desperately for a way to save Maria. What they discovered was that cancer research focused on glioma prevention or recovery was virtually non-existent.
They then spent the next 14 months feeling unimaginable things—they and their three other children.
“In the course of the 14 months from Maria’s diagnosis, we watched her go from having balance issues, double vision, sleeping excessively and vomiting to bouncing back almost completely to normal after radiation in what is known as the ‘false hope’ stage,” Megan McNamara wrote. “From there the tumor began to grow back and eventually rob her of everything a child loves to do. She endured horrendous debilitating headaches. Eventually eating, swallowing and breathing became difficult. She watched as her body slowly began to shut down. I wasn’t even able to hug her tightly as it caused too much pain. As she saw herself becoming worse, Maria would tell us ‘I think we should go back to St. Jude’s.’ We had to tell her that St. Jude’s could no longer do anything for her anymore.”
How Little Maria Spent Her Final Days
She didn’t feel sorry for herself nor spend time praying for herself.
She spent her final days intent on praying for other children and other families battling cancer.
“Through it all, Maria showed tremendous character and dignity. Her strength, her courage and, most of all, her faith, left marks on our souls that have changed us forever,” her mom wrote. “She never thought of herself. Instead she chose to pray for all children suffering from cancer and their families. She prayed that the doctors would find a way to help them. She is our hero and her fight became our inspiration. Her prayers became our mission.”
Lighting Up the Darkness
People sometimes say “Everything happens for a reason,” and I don’t like it for the very reason that sometimes little kids get cancer, and I’m sorry, but I’m not okay with attaching concepts like Fate or Purpose to Maria’s death and the agony felt by her parents and siblings.
But I also understand that THIS is why people say that.
The suffering endured by Maria and her family provided an opportunity for a tiny person with a giant heart to inspire those around her.
And now we have Prayers From Maria – Children’s Glioma Cancer Foundation, dedicated to funding global research into the causes, prevention, treatments and cure for these childhood brain tumors.
Why I’m Writing About This and Why it Matters So Much to Me
I know a guy.
He is easily among the best and most-inspiring people I know. He has become a personally significant mentor and friend. He owns a web-design firm with a few business partners. They are amazing people doing amazing work. Their company’s stated mission and purpose is “to help humans flourish.”
Not to maximize profit (though they run a fine business). But simply to—as a business—lift people up.
Their remarkable team walks that walk on and off the clock. My personal admiration for them knows no bounds.
They are donating a bunch of their time, talents and money to Prayers From Maria.
They didn’t stick their hands out asking my consulting partners and I, or anyone else, to help offset their costs. They said simply that this is an amazing organization doing difference-making work and invited us to be a part of helping people who need and deserve it.
I feel honored to be asked, and would have wanted to help them EVEN IF the cause didn’t matter to me.
But I’m a father. This matters to me.
I think about how fast my son is growing. Too fast.
I think about how I’m not promised tomorrow, or even five minutes from now.
How everything can change at any moment.
How truly, humbly, grateful I feel right now to have a healthy little boy.
How grateful I feel to have another opportunity to hug his precious face and see about mindfully adjusting how I communicate with him. About mindfully adjusting how I choose to think and act today with this once-in-a-lifetime opportunity.
To be here.
Soon it will be time to go hug my son.
Almost 9 years old. Who’s luckier than me?
Maybe you. I hope you feel this too. The thing that replaces hurt and anger when we see things from another perspective.
Thank you for being you, Maria McNamara. For all you gave. And all you continue to.
Do Something Amazing Today
I don’t feel good asking you for things. If I ever get a book finished, I’ll surely be spamming you with pleas to purchase five copies.
I’m trying to save whatever goodwill I’ve earned for that.
But some things are bigger than me and more important than how comfortable I feel.
Right now, there’s a father somewhere who is about my age who has a son about 8 or 9 years old. Like me. But instead of getting ready to celebrate his birthday, he’s saying goodbye. Helpless. Trying to be strong for his wife and family. Trying to keep it together at work.
Right now, there’s a little boy out there around my son’s age who will grow up to be a father himself. And one of his kids is going to be diagnosed with a brain tumor.
Today, that diagnosis would be a death sentence.
But tomorrow, it doesn’t have to be.
Please join me in helping people save the lives of children and give hope to their parents.
There is no amount too small to give.
Thank you so much for reading this and doing something meaningful for other people today.