Tag Archives: Terminal Illness

How to Change Your Life and Always Feel Good

a-charlie-brown-thanksgiving

Warning: If you’re someone who A. Reads this blog regularly, or B. Prefers feeling miserable, you can skip this one because you’ve seen most of it before, or potentially run the risk of feeling better about your life.

Please just stop.

Just for a minute.

Stop.

And use every bit of brainpower and awareness and common sense you possess to ask yourself: Why am I doing this?

Doing what? Doesn’t matter. Anything. Whatever you’re doing.

It probably applies most to your job if you have one, or your decision to attend school if you’re a student.

It probably applies to your home life. To your relationships. To your decision about where you live and whether you rent or buy, and what you do when you have free time.

But it really applies to every waking moment.

Why are we doing this?

“What is it that you really want?” people like to ask. It’s a really great question. And we’re sometimes quick to fire off some answers that we probably think are true.

Money!

True love!

World peace!

Or maybe something more specific.

A million dollars!

A spouse who makes me feel safe!

An end to all the fighting in the Middle East!

I think I want all kinds of things. A more-lucrative career. Writing success. Maybe a really nice house and cars. Maybe the means to go on adventurous vacations and see the world. And little things. Like a massive television or a kitchen and bathroom upgrade or my favorite team to win the championship.

Sometimes I feel bad when I don’t get what I want.

Sometimes We Need a Wake-Up Call

The ability to empathize can sometimes provide us with the dose of reality and perspective we need without actually having to suffer through a crisis or tragedy. That’s always nice.

Other times, maybe we need the bad things to happen to us.

I lost my family.

The two most-important people in my world. One gone half the time. A little boy I sometimes feel as if I’m constantly failing. The other, gone forever.

And I felt so horrible that all of the things I thought I wanted I quickly realized—for the first time—just how irrelevant those things like money and new televisions really were.

When you’re broken on the inside, there is no checking account balance large enough to mend you.

Early this year, I had a tonsil infection with symptoms that mirror Non-Hodgkin’s lymphoma. There were a few days where I thought I might have an illness serious enough to kill me and I was scared.

I’m pretty sure having a really luxurious kitchen or a 100-inch television wouldn’t have quelled my fears.

Last May, I was whining about my life right here when I learned about a lovely child named Abby Grace Ferguson. A little girl who the doctors say has a terminal illness they’ve never seen overcome.

Abby has a mom and dad.

A mom and dad like my son’s mom and dad. My son is 6. He’s in first grade and my soul bleeds any time I let the briefest thought pass through my brain about something bad happening to him.

Abby’s parents believed her to be perfectly healthy until she was 8, when she was diagnosed with Sanfilippo Syndrome—a rare disease that causes progressive brain damage. Without a miracle, or radical medical advancement (which they’re working on!), Abby will lose her ability to walk, talk and feed herself. She will more than likely lose her hearing and have seizures. Most children diagnosed with Sanfilippo Syndrome do not live past their teenage years.

It’s unimaginable. What her parents must feel.

But I can assure you, me having Non-Hodgkin’s lymphoma would seem like a pleasure cruise by comparison.

Everything is relative. Some people prefer to deal in absolutes. I try to stay as open and flexible as possible. Because the older I get, the less sure I am about how much I really know.

But I do know one thing.

I Know What You Want

I’m not saying you don’t want money. Because it’s easy to want.

I’m not saying you don’t want love. Life is emptier without it.

I’m not saying you don’t want world peace. Things would be less messy, scary and complicated.

When you strip away EVERYTHING? All the noise and bullshit?

All you really want is to feel happy. Is to feel content. Is to feel inner peace.

That’s it. That’s what you want.

You think money will make you feel content. You think the freedom and purchasing power it provides will make you feel happy. And you believe you’ll have more peace if you eliminate debt and don’t have a horrible boss and have sex regularly with someone you trust who says I love you and makes you feel confident and safe.

You want the stuff because you want that feeling. That feeling we call “happy.”

We don’t need stuff or status to feel good about our lives.

You could lie still on a couch watching reruns and feel amazing about your life if you only felt happy enough. And there are people like that. They’re called stoners and tweekers. Drugs are not a good choice. But they DO illustrate my point fabulously.

You don’t need more money.

You don’t need a nicer car or bigger house.

You don’t need things.

And if you believe otherwise, you might be doomed. I think most people are. To a life of dissatisfaction and sadness. And that’s no way to live.

I might argue you only need ONE thing to be truly happy: Gratitude.

“What!?”

Genuine, heartfelt gratitude is the prerequisite to true happiness, and you can change your life overnight simply by realizing it and working daily to stay mindful of it.

You have a house and aren’t sleeping outside in a box with no money or food? Thank you!

You have friends or family or children or pets to love and love you back? Thank you!

You can hear music and people speak because you’re not deaf? You can see sunsets and attractive people and your child’s smile because you’re not blind? You can walk or kiss or have medical insurance? You have lungs and breathe because you’re not currently drowning or being choked by someone mean and horrible?

Thank you!

Some people are going to roll their eyes. “You know who says ‘Money doesn’t buy happiness?’ People who don’t have any!”

Not everyone can be helped. Pity them and move on.

We have enough.

You ARE enough.

Choose happiness because it’s so much better than feeling terrible.

Choose gratitude because you can never be happy without it.

Choose love because you get what you give.

Tomorrow isn’t here and yesterday hardly matters.

All we have is right now.

I am eternally grateful for you.

Thank you.

Happy Thanksgiving.

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The Godsmack

I said I wasn't grateful. And then I had a wake-up call.

I said I wasn’t grateful. And then I had a wake-up call.

He gets this look on his face sometimes. My son who is nearly six.

It looks almost like panic.

I have a super-low tolerance for whining. But this wasn’t whining this morning. This was legitimate sadness.

Because he didn’t want to invite a mean kid at school to his upcoming birthday party.

“I’m sorry, man. The rules are that we have to invite everybody in your class.”

He’ll come to my party just to be mean to me.”

“Oh, buddy. I bet he won’t. I bet he won’t come at all. Is anyone else at school mean to you?”

“No. He’s the only one.”

“Is he mean to other kids?”

“No. I’m the only one he’s mean to.”

“What does he do when he’s mean to you?”

“He calls me mean names.”

As we brushed his teeth and combed his hair for school, he explained to me that this boy in school is going to go to the same college as him some day just so he can continue to be mean and call him names.

They say you learn everything you need to know in kindergarten. How silly.

Kindergarten doesn’t teach you that you’re not alone. Other people feel just like you.

Kindergarten doesn’t teach you that life is hard. That tends to happen later.

Kindergarten doesn’t teach you that life isn’t fair and the sense of entitlement we all feel is a byproduct of being particularly lucky right up until we’re not anymore.

That first really hard smack from life tends to leave a mark.

It breaks my heart to see my son sad. He’s way too young to feel sad.

And all I want to do is save him. All I want to do is hug it all away. Maybe it works. Maybe it doesn’t. But you try anyway. Because that’s what parents do. We try to fix the unfixable with magic.

Don’t cry. Everything’s going to be okay.

I whined yesterday even though I have a low-tolerance for whining. I’m a hypocrite sometimes because I’m a person.

While writing about how sad I was about only seeing my son half the time because of my ex-wife and I’s shared-parenting agreement, I mentioned that I should probably be grateful I get to see him more often than most divorced fathers typically see their kids.

I believe we should always feel grateful.

But I told you yesterday that I don’t feel grateful. I told you that I feel cheated. Because this life is not what I wanted.

Because the Universe is supposed to acquiesce to my every beck and call. But the Universe never got that memo. Or maybe the Universe thinks I’m an asshole. Or maybe both.

Wake-Up Call

A beautiful nine-year-old girl named Abby Grace Ferguson is not likely to ever get her driver’s license. Or attend prom. Or graduate high school.

Abby is probably going to die a teenager.

Abby’s mom and dad watched their daughter achieve every typical developmental milestone until she was about my son’s age. A kindergartener.

That’s when Abby began to exhibit a learning disability and a developmental slowdown. After a few years of medical testing, the doctors told Abby’s parents that their daughter has a disease with no cure.

Hopeless?

Terminal, the doctors said.

Always?

100-percent of the time.

I try to put myself in that moment as a father. Breathe. In. Then out.

“She was diagnosed with Sanfilippo Syndrome, a rare disease that we passed on to her. How could that be? How could our precious daughter be born healthy and at age 8, we find out she is not healthy at all?” Wendy Ferguson wrote about her daughter.

“Her disease causes progressive brain damage. She will lose her ability to walk, talk and feed herself. She will more than likely lose her hearing and have seizures. Most children diagnosed with Sanfilippo Syndrome do not live past their teenage years. Aside from losing her, our biggest fear is watching her suffer. The thought of watching her lose abilities that she once had, slowly fading away, just makes my heart ache even more.”

And I wrote that I didn’t feel grateful.

Because my biggest problem in life is that I only get to see my son half the time mostly due to the fact that I was a shitty husband who didn’t appreciate how good I had it enough to cherish it when I could have.

I wrote that I didn’t feel grateful.

Because my—near as anyone can tell—perfectly healthy child is sad because of one mean kid at school who might plot to ruin his birthday party and intentionally attend the same college as him in 12 years just to be a dick.

I wrote that I didn’t feel grateful.

And I meant it. I wrote that I felt cheated. And I meant it. Because the world delivered me a shitty hand and now I’m sad when I never really knew sadness, and afraid when I never really knew fear.

After Abby’s diagnosis, we live by the cliché, “enjoy the little things, for one day you may look back and realize they were the big things.”

It Tastes Like Perspective

Your pains are yours.

The reason divorce is so hard for me is because life had mostly been easy for my first 30 years.

I don’t think people should feel guilty for the pain they feel. For the sadness, or the fear. We only get one set of eyes with which to view the world. We feel what we feel.

Let the truth be the truth.

The reason my little son is worried about this kid at school is because something must have happened recently. He has, literally, never mentioned this kid throughout the entire school year. Not until today. An unkind exchange on the playground likely led him here.

It hurts to see your child upset or suffering. Physically hurts. Helpless. So you hug, because that’s your best move.

Everything’s going to be okay.

Fake magic with a placebo effect.

I think about Abby Ferguson’s parents and it takes my breath away.

In. Then out.

Because I’m so afraid of things in my life now—things that maybe I shouldn’t be afraid of since I see all these other people living so bravely.

Every day, the Fergusons have to say goodbye to their little girl.

Because tomorrow, Abby won’t be like she is today.

“We found strength we never knew we had.”

The Fergusons are literally living like there is no tomorrow. Where clearly drawn lines separate what’s really important from what isn’t.

“Now, I just want to enjoy a smile, a hug, or a laugh from my daughter. I want to sit with her and play. I want to help her brush her teeth, wash her hair, and help her put her shoes on. I can’t take enough pictures of her. We celebrate the smallest accomplishments as if she won an Olympic Medal. I am aware of what the future holds for her but try not to think about future milestones. It is too painful. I just want to live in the moment and enjoy her right now, the way she is.”

I wrote that I wasn’t grateful.

Thank you, God, for the well-timed smack.

I wrote that I wasn’t grateful.

Thank you, Ferguson family, for teaching people how to live courageously.

I wrote that I wasn’t grateful.

Thank you, Abby. You will teach so many lessons in your precious life. All of the things most adults haven’t figured out. About love. About gratitude. About what it means to be alive.

I wrote that I wasn’t grateful.

And I’m so sorry I did.

I’m going to go home tonight and hug my son. I’ll ask him how his day went. If the situation requires, we’ll have a fake-magic hug.

And maybe it will actually help. Mom and dad hugs do that sometimes.

I wrote that I wasn’t grateful.

So, I’ll squeeze him again.

And maybe it will actually help me. Hugs from a child do that sometimes.

Everything’s going to be okay.

Real magic.

Abby Ferguson has a lot to teach us about life.

Abby Ferguson has a lot to teach us about life.

Author’s Note:

A special thanks to Wendy Ferguson for allowing me to share her family’s story. You can follow Wendy’s blog here. Also thanks to her close childhood friend Gretchen at “Drifting Through My Open Mind” for sharing the Fergusons’ story with me.

*Please visit Abby’s Facebook page at www.facebook.com/CureSanfilippo to learn more about her progress and fight for a CURE.

*To learn more about Sanfilippo Syndrome, please visit www.mpssociety.org or www.teamsanfilippo.org

*There is HOPE for a CURE for Abby and other children like her. Gene Therapy has shown promising results but has not gone to clinical trial yet. We are raising awareness along with other parents of affected children to help start the trials at Nationwide Children’s Hospital in Ohio. If you are interested in donating towards a CURE for Abby, please visit her Go Fund Me page at www.gofundme.com/abbygracecure. All donations are tax deductible and 100% go toward research and finding a CURE for Abby.

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