Tag Archives: Special Needs

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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