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.
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.
Right now.
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.
❤️❤️❤️
Thank you for sharing this…it’s a sad reality and a worthy cause to give to.
Just so you know – the “I hate you” thing…Even though it doesn’t make it less painful to hear, it is so, so common for kids to throw that at you.
I don’t think it’s your job to not upset him, it’s his job to learn how to temper those emotions, and it’s your job to help him. (That’s what childhood and parents are for..).
It takes time. Prayers and good thoughts to you.
Thanks for sharing this story Matt. As a parent there’s nothing harder for me to read than a story about another child dying. But sometimes these stories are what we need to be better parents ourselves.
A great piece on two points for me.
1. Saying stupid things that I fear may scar my children. I like that my kids have got to the age where they call me on some of those stupid remarks that are said unthinkingly sometimes. It gives me the opportunity to take responsibility for him they could be heard by others, especially the others that I want to feel good and confident about themselves. And just as I call them on inappropriate behavior, kindly I feel, I am grateful that they are able to do the same with me. If nothing else the message in our house has been nobody’s perfect, everyone makes mistakes and as long as you take responsibility for them and do your best to fix them no apologies required.
2.
I really wish I could edit when I make a mistake in a comment and accidentally post it before it’s done.
2. I had the great privilege professionally to be frequently involved in stories like the one you tell above. I’ve met amazing people dealing with horrific tragedy. I’ve seen incredible grace and spirit in children and adults. I think it’s greatly impacted the way I live my life, the way I parent my children, and the way I view my pithy problems in the grand scheme of things. Every day when I come home and walk into my noisy messy house and sit at my table with my noisy messy family I am incredibly grateful. Every day as we sit at the table and my kids ask what I did today and I tell them the stories they also feel compassion for the subject and gratitude for what they have.
I think both these points apply to adulting, marriage and partnership. Some days I’m going to be a dick and say or do something really stupid as will my partner. But taking responsibility and communicating kindly and dealing with it in the moment, not demanding perfection and caring for my marriage as I would care for my child only makes sense. And being grateful for what I have in my marriage and family when there are so many people who have it so much worse helps to keep it all in perspective.
With all due respect, and a since request for pardon, I can’t help but state that kindness in order to make or prove yourself better than others is no kindness at all.
Curious as to what this refers ? Don’t quite understand.
This is difficult to state because first, I dont want to make Matt out to be a bad guy- I dont believe he is and second I may not have a good grasp on what an appropriate boundary is with “calling him out”. I believe he is intentionally writing here with a purpose, and doesn’t want to the focus to be on him- but the writing, and the conversations (at times) have been such where there feels like a personal connection and community. Because of that, because of the real-ness of the conversation, one can feel like you know some parts of others.
Matt always talks about kindness, about doing better- but it feels like it is still coming from a place of moral superiority. Not of likeness, and kindness…
The picture Matt painted of that little girl was angelic, but probably not realistic.
That is not meant to lower the goodness of her heart that she chose to pray and care for others while she was losing her life. That is heroic by any measure.
But, she likely was not as perfect as he portrayed her to be.
So, it makes me wonder why he chose to portray her like this. Was it to evoke emotion? Is this the skill he has become really good at?
Is he using the moral superiority of kindness to insight others to feel something?
This doesn’t make him a bad person, again- I believe he writes here with a purpose and with good intentions.
But the problem with words, especially with words carefully chosen and crafted is sometimes they dont reflect reality.
Maybe I am wrong for writing this here. I am probably wrong for even reading or commenting, but part of the reason I am is because I have valued this community and this connection and I dont think I would be honoring that at all if I didnt speak up.
But, I may be wrong in this, also.
Thanks for clarifying.
Lindsey – I think I understand what you are trying to say but I did not get that feel from Matt’s piece. I wrestle with this a lot within myself. Am I doing good to do something for someone else or for myself? To make me feel good about me? Or to make others think well of me – thereby also making me feel good about me.?
So a lot of the time I try to do my service or giving anonymously. The thing is not everything can be done that way and you can’t make a personal appeal to others to support a cause that way. In the end, I think actions arising from any singular motivation are rare – our motives are nearly always mixed or layered no matter what we are discussing. Is Matt attempting to stir emotion in encouraging people to donate to a cause he believes in – well that is kind of obvious. Does he have some other motivations too – like making himself look good by caring about this stuff – there may be some unconscious element of that – like there is in all of us – but I just didn’t read any intentional moral superiority in this.
Hi Tina. First I want to be clear I am not trying to accuse or attack. You’re absolutely right we all carry around some self satisfaction when we abide by our own standards of morality, and that isn’t wrong. But there are two things that I have trouble with: 1- genuine kindness comes from identifying with the person/situation. It is very much about empathy and in someway meeting that need, showing compassion. It’s not about just refraining from hurting someone. If the motivation to be kind is to look like the better person (even if it’s so you can look at yourself as a better person) it’s missing the mark. That is about oneself, not about compassion for another.
The second thing I have trouble with is a bit more broad. And, I need to write a hefty amount of disclaimers here: I dont know if it is my place to bring it up or point it out, and I ask for pardon because while I get that many people engage here for ideas, or it personally resonates in some way (which was the case for me about many things discussed even beyond marriage and divorce), I also bring with me what seems to be a default mode of desiring community and connection and behavior that I hope to be community minded. ..in short I start to care for people. Even random blogger guy, or random commenter lady. My motivation to point this out is legitimate (though maybe misdirected, and even inappropriate) care. My observation is this – Matt evokes emotion with his writing. He is excellent. But Katal (I may not be spelling it write) sort of proves my point with her comment “This makes me love you even more”- I’m paraphrasing. Matt’s got some power there. I know, because I’ve thought that and felt that, too. ” I just love this guy!”…But is he happy and content with evoking emotion, getting praise, but never really walking the walk? He has incredible skill and ability to connect and bring out emotion, he just needs to know that can also be used to manipulate and does carry some responsibility with it.
So, that’s my issue. We probably don’t need to go any further into it. I even now regret that I’ve steered this conversation this direction, and made it not about the cancer research. (And o – yes I can totally picture Matt’s eye roll and ‘gawd ‘ from my comments).
I think it’s time for me to hang up my mbtttr hat for a good long while.
Best of luck to everyone.
My eyes were, indeed, rolling a tiny bit, Linds. But your honest reactions are valid, so long as they’re honest reactions.
I thought my motivations for writing this blog had been made clear approximately 500 or so times.
If you’d like to ask me about them again, you may.
If I can manipulate someone into treating themselves and their romantic partners better in order to preserve their relationship and family, I can live with it.
If I can manipulate someone into generously donating money to a cause that helps other people, I can live with that too.
MAYBE (though it’s hard to imagine), I can actually make a little money from writing some day.
But we’re about two weeks away from the four-year mark of MBTTTR existing, and I’ve earned negative dollars for web hosting fees and maintaining ownership of the domain name.
There’s no doubt that some of the feedback I get here makes me feel good sometimes. But I think it’d be pretty weird if someone suggested THAT is why I write things here.
Ask anyone who writes things for public consumption, or any artists who put themselves and their work out there, and I think you’ll discover it’s the negative feedback that sticks with people the most.
“My eyes were, indeed, rolling a tiny bit, Linds.”- Pa-ha! I knew it! ; )
I’m not questioning your motivation for writing here, the most inappropriate part of me bringing it up is that I’m asking what are you NOT doing because the needs for praise or recognition, or validation are met here?
…do we need to do a go fund me so you can take a year off from work to write your book?
You’d never ask, but I would.
Could you handle not working for a year? Would you go crazy without a routine?
(The wheels of my imagination are always turning…)
Just FYI- my second thought had nothing to do with the first…
Last comment, and I know this wasn’t the point of your reply but seriously- how can we help you actually write your book (if that’s something you wanted to do)?
Have you thought about collaborating with someone?
Setting out chunks of time to talk and write. I think collaborating would be where most of the work is-talking about where you are wanting to go, and the ideas that back your conclusions up.
Going somewhere that isn’t home helps- you can’t just go wonder over to whatever distraction you normally have.
It can be 1000 pages worth of what looks like crap, then you just edit, and edit and refine. ..
Ok, I’m done. I would have nothing to do if I weren’t “solving” other people’s problems..
Thanks. I hope not.
They don’t make a container small enough to house the moral superiority I feel over other people.
I thought my motivations were pretty clear. I even included a headline that said why I was writing this.
1. Someone I respect and admire immensely invited my side-business partners and I to contribute to a good cause. Because of how much I admire and respect this man, I decided this was something extra I could do.
2. And INFINITELY more importantly, I took the time to read about the McNamara family and this little girl’s life. I thought about what those parents must have gone through and felt knowing the clock was ticking with their little girl.
And then I juxtaposed it with recent conflicts with my young son, and how I felt and reacted, and how different those feelings and reactions would have been with a different perspective.
One of love and gratitude. One of mindfully being present in the moment with child, and daring to imagine NOT having him around.
The list of my personal failings and shortcomings is LONG. In light of that, I struggle to find a place on that list for this post or my motivations for writing it.
But hell. I’m also a little too defensive. That’s one of the things on the Shortcomings list.
This post made me love you more than I already do, Matt.
Childhood cancer awareness is a cause dear to me. I know too many people whose lives have been forever changed because of childhood cancer. It first became important to me when I stared reading Mary Tyler Mom’s blog way back in 2011. She was funny and smart and I loved everything she wrote. In September 2011, to raise awareness of childhood cancer month, she published her daughter’s story.
Every day that month, she wrote a different post, each day representing one month in her daughter, Donna’s, cancer treatment for papillary meningioma- an aggressive brain tumor.
Donna’s story quite literally changed my life. It is heart-wrenching and tragic, and has changed every person who has ever read it. I read it and knew immediately that I had to do something. I got involved, met Donna’s mom, volunteered for St. Baldrick’s, and the rest is history.
Do yourself a favor and read Donna’s Cancer Story. Tissues are recommended. Then check out St. Baldrick’s. They are my absolute favorite childhood cancer research charity. They do incredible work.
Thank you for bringing more awareness to a cause so worthy. Childhood cancers are the most underfunded. They only receive 4% of the total government funds allocated for cancer research. It’s pathetic. We can do better. ?
Here are some links to get you started:
http://www.chicagonow.com/mary-tyler-mom/donnas-cancer-story-2/
https://www.stbaldricks.org
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One of my best friends from high school lost a 7 year old daughter the same way. It was the most heart breaking thing ever.
I will never understand why children have to die.
I think we do our children a disservice when we aren’t parenting consistently – and that sometimes (ok, often) means upsetting them in many ways. While we don’t want to be unkind, we can’t treat every day like it’s a parenting vacation, either. (Which we totally would if we knew it was truly our last day on earth – we’d spend the day surrounded by ice cream, pizza, and playing, and there’d be no bedtimes or tooth-brushing.)
If your kid doesn’t hate you several times before adulthood, you probably were doing it wrong. 🙂