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.
…
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.
Thank you Matt. Thank you so much. I am crying uncontrollably now. Because when I heard of Abby’s illness for the first time I felt exactly like what you just described. Life can feel so unfair. But for Abby it’s Really. Not. Fair. You put this in a perspective that touches each and every person who may read this and I knew you would make it beautiful. Thank you.
You’re the sweetest. Thank you.
Should you find yourself with the Fergusons any time soon, I’d really appreciate you tossing in one hug for me.
Your pain is yours. Your loss is real and so is that of the Fergusons. No one should have to go through either version.
Of course, you said that already …
Awesome to hear from you, David.
Glad to see you back, sir.
I’m glad, tool, that you’re still around!
It’s not nice to call people “tools.” 🙂
Rats! I can’t blame the smartphone for this one either!
Being new at the blog world, I was not sure what to expect with your post. It is wonderfully written. I will share two things that came to mind right away from reading your post.
First, I have learned along this journey that everyone’s problems in life are important to them. It does not matter how big or small they seem to the outside world, they are big to that person. In the beginning, I have to admit that I would resent when a parent would complain about their child getting a bad grade or that they did not make a sports team. I just could not understand how they could be so ungrateful for having a healthy child that will outgrow these simple problems. It has taken a while for me but I am at a place now where I realize that is all they know and that is what is important to them. I would probably be the same way if it had not been for Abby’s diagnosis.
Second thing I want to say is that I went through a divorce at 7 years old. My parents divorced and of course at the time it was terrible. The blessing that I received out of that was 2 wonderful step-parents that have been in my life for 30 years. I can’t imagine my life any differently without my new set of parents.
Thank you so very much for sharing our story. I am so grateful for your kind words. Your story is equally important. Your son may not realize it yet but he will one day realize that you have very wise words for him.
Thank you for talking openly about that, Wendy. I would absolutely resent it.
Just with the divorce, when it felt like the world was ending, other people laughing and enjoying life around me felt like spikes being shoved into my head.
It’s like we want everyone to be sad with us instead of enjoying life and lifting us up. They say laughter is the best medicine because it’s true.
I don’t know what your plans are for blogging. But if your plan is to share your story, I hope you’ll take time to share what’s inside of you.
Minus the sugarcoating. Like you just did admitting you would have resented totally normal human reactions before all this.
If laughter is the best medicine, the second-best medicine is connecting with people who know how that feels–and maybe more importantly–being the light in the darkness for them.
When someone tells you how your bravery and courage and love and example makes them feel brave and like they want to be better people, it will change your life.
For the better.
Thank you so much for letting us be part of what is happening in your family’s life. It is unimaginable.
Equal parts horrifying, equal parts inspiring.
I think this whole being-alive thing can be like that a lot.
Thoughts and prayers for Abby, you, and the rest of your family.
I might need to clarify. I meant that I would have been the same way as other parents before Abby’s diagnosis, like complaining about a test grade or not making a team. I think my wording implied the opposite. Thank you for your honesty.
No! I understood. I’m just lousy at writing coherent comments sometimes. 🙂
In other words, I cannot imagine being in your situation and exhibiting as much courage and grace as you do in your writing.
Thank you, Wendy.
powerful post. that’s all I can say.
Thank you. My heart aches for the family. I wasn’t going to write today, but this story grabbed me by the throat.
Oh wow… totally teared up!
That family is worthy of such things. Appreciate you reading. 🙂
Such beautiful words about such deep sadness.
Thank you. They seem a brave family. Very inspiring.
Sigh. Exactly. It’s this… and it’s that. It’s being driven crazy by the things that drive us crazy (they never put their shoes in the shoe bin!!) and it’s realizing every day how some parent is going to have to throw out the brand new shoes they bought for their child because something has gone horribly wrong. It’s perspective and thankfully it constantly changes. It’s good to mourn sad things, it’s good to celebrate wonderful things. Sounds like you get it (more and more with each post, methinks?) and Abby’s family is getting their own Olympic gold in it. A wonderful reminder… thank you.
I generally do a good job “getting it.” But I often do a bad job living in the present and soaking up every bit of RIGHT NOW, possible.
Seems silly to waste time like that. But I do. And I’m always trying to get better.
I hope everyone else is trying, too.
To be honest, this is why I rarely comment on your posts, even though you write so wonderfully. Reading about how your divorce was the most painful thing in your life (which I don’t doubt) is a little galling for someone who has faced losing a child to cancer.
I can’t help but wish sometimes that I could be as eloquent as you, on such matters. So I thank you for writing this
To be honest, this is why I rarely comment on your posts, even though you write so wonderfully. Reading about how your divorce was the most painful thing in your life (which I don’t doubt) is a little galling for someone who has faced the possibility of losing a child to cancer.
I can’t help but wish sometimes that I could be as eloquent as you, on such matters. So I thank you for writing this
Thank you.
While I’m not inclined to concede that divorce is somehow a not-so-bad life event, I very much appreciate what you’re saying.
I can’t begin to understand the pain and horror associated with my son’s health and wellbeing like this. It upsets me just to imagine for a moment.
Thank you for reading and taking a minute to let me know how you feel.
I didn’t at all mean that divorce is not horrible and upsetting. It absolutely is.
Wake-up call for me too, tanks Matt.
Thanks … is impossible to write in english with an iphone set to use italian …
That’s the most fantastic little autocorrect note I’ve heard yet. 🙂
Tanks. Haaa. Funny.
Thank you for this one Matt, we all need wake up calls now and then, don’t we? I have a dear friend, he tells me he lives in the real world, so whenever he and I exchange e-mails I modify my e-mail signature to read ‘helplessly hopeful’. It annoys him, how could I live in the real world and still hold on to hope he asks. My answer is always the same, because I know there are monsters in the world, I have faced them myself and I have seen others face them. I have watched parents stand up and tell the stories of murdered children to rooms full of hardened convicts behind the walls of prisons, I have told my own stories of violence to those same rooms, I have held the hands of raped / abused women in emergency rooms as we try to find them a safe haven, I have sat watched parents raise and then bury their terminally ill children.
I am too old not to know there are monsters, yet I have also know when we stand up it isn’t because we have no hope, it is because we are hopeful and light filled. We know, each of us with a simple touch, with a hug, with gratitude and love we can make a difference. It isn’t always easy, sometimes it is hard as hell. But hope and love go hand-in-hand.
My favorite part of my new life is the opportunity to practice hopefulness in the midst of sadness.
The bad stuff provides the contrast we sometimes need to identify all the beauty.
And yes. I think we all need wake-up calls. Some (*coughMEcough*) more than others.
I find that it is in those times that we are at our lowest and feeling sorry for ourselves or cursing the shitty hand life has dealt us that we learn our biggest lessons. It’s ok to admit that you don’t like the way your life has been played out…we’re human. It’s ok to open yourself up and realize that it really ain’t so bad.
I tell my friends…you get a moment. One little moment to sink down and curse the stars for all the shit you don’t want in your life. Then, after that moment, you have to pick yourself up and see how much you really do have and appreciate that this is YOUR life…and you can do with it what you want, but please, don’t waste it.
I too am grateful to you for sharing this beautiful family’s story. It has given me another chance to appreciate that my shitty life, could be shittier. My heart goes out to families like these…the strength that they have the courage that they show loving every moment with your child because you know it won’t last.
Much love to them…and to you Matt, for being human, and for the courage you both show.
Thank you very much, Dawn.
Yes. Don’t waste it.
I’ve been in a little bit of a rut lately. I need to get back to it.
If you snap out of yours, I’ll snap out of mine. LOL
Have a great weekend Matt!!
Isn’t it strange how feeling empathy for someone else’s pain can make you question your own? As if somehow you’re not allowed to feel it because they feel it worse?
Of course everyone is allowed to feel sad despite what anyone else may be going through, but sometimes taking a peek into someone else’s life can put your own life into perspective.
I had a moment like that a few months ago… http://rabitstew.wordpress.com/2014/03/20/patience/
You just nailed exactly how I feel about that phenomenon.
I want people to own their pains and fears and know they’re validated. People have little control over what makes their hearts, minds and bodies do what they do that first time life turns upside down.
But yes.
Immersing oneself in the challenges of others is a valuable lesson that can help us be more brave in our own lives.
Thank you for sharing your story. I’m going to read it now.
Thanks for a beautiful story, Matt.
Appreciate you taking a minute to read. 🙂
I read your entries all the time…not posting too many replies lately.
Dear Matt,
This is a Very Heart wrenching post. I wanted to bring You a little sunshine.
Tag! You’re It! Pass It On, Or Enjoy This Box Of Godiva Chocolates From Me To You.
http://astraltravler.wordpress.com/2014/06/01/a-very-special-thank-you-%E2%9D%A4%EF%B8%8F-to-john-of-writingthebody-%F0%9F%8F-wonderful-team-member-readership-award-%86%F0%9F%8F/
Your Friend,
Anastasia ?
Thank you, Anastasia! You’re always too kind.
Dear Matt,
It’s My Pleasure. Please keep the box of Chocolates as my gift to You.
Your Friend,
Anastasia ?
Beautiful post Matt. The same thing happens to all of us. There are a number of paratriathletes in the tri club I train with. Amongst them is a young guy who is gradually losing his sight and a young mother who has an inoperable brain tumor. It’s benign at the moment , but it affects her memory and she lives with the time bomb of knowing that one day it’s benign status could change.
Both of them savour every moment and squeeze everything they can out of life.. as neither of them know when their respective lights will go out. They help me keep things in perspective when I’m having a particularly whiny day!
Thank you, Verity. I need the reminders. I’m self-centered and whiny. And I don’t want to be. Appreciate you leaving this note!
I cried, and my heart aches for the Ferguson’s. Thank you for sharing this Matt!
Thank you! We all have much to learn by familiarizing ourselves with death. I am terminally ill and find it important to provoke conversations. We are all around you.
warmly, marcy
http://livinglydying.com/
Thank you, Marcy. Mostly for your incredible bravery, but certainly also for taking a moment to read and comment here. Honored.
Many, many blessings to you and yours.
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Good reminder…and so passionately written. My heart goes out to Abby and family. Blessings.
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