My son is a hockey player… until he’s not. What Next?

Since 2010, the season preceding the Blackhawks’ first Stanley Cup in a generation, my son has been smitten with hockey. He started ‘late’ as some kids go, since he didn’t learn to skate until 5 years old, but he’s had more success than most over his near-decade of playing.

Four state titles and two league titles. For five seasons he made the top team, three of those years that team was not just the top at his organization, but also the top in the nation. This year he’s been made captain, a responsibility he takes very seriously. He commiserates with his alternate captains (not assistant, but alternate- this is HOCKEY), and strategizes with his coaches. He strives to set an example and, I’ve been told, is the consummate teammate. Selfless, hardworking and humble in all things.

He’s met hall-of-famers and been coached by some of the best. He’s quit sport after sport – not because he didn’t have time, but because no other sport brought him the absolute and total joy that he feels on the ice (his words, not mine). He was measuring all other sports against the fun he was having with hockey, and nothing else compared, it wasn’t even close. His friends are his teammates, his study is the car, his weekends are tournaments, and his bedtime is still earlier than many his age because chances are he has a game or practice tomorrow.

For the past 9 hockey seasons, my life has been filled with, “We can’t, there’s hockey this weekend.” But we appear to be looking at the end of the road.

Why now? Why are we mentally preparing for the end when he is still so ardently in love? Well, he isn’t growing. He’s a second-year bantam, and if you don’t know, that means full contact. He’s 14 years old (14 and-a-half really) and only 5’1” and 102 pounds. When he was cut from that top team, it was after they had moved him from his preferred position to one he’d never played before because they were looking to “go bigger” on defense. All the 14-year-old defensemen on that team are 5’7” and 140+.

There have been many discussions with folks that end with another reassuring us that "he’ll get there; he’s just a late bloomer; his parents are tall, and eventually he’ll grow." These aren’t hockey parents. Hockey parents don’t try to comfort. They know. If he grows late, he’ll be left behind. They smile wistfully and nod sympathetically because they know. Other kids are in the weight room, but lifting pre-puberty can stunt one’s growth – which we certainly don’t need!

In less than a month, this season is over. Next year, if he doesn’t grow, who knows if he'll play. He won’t be able to play High School (Against 6’ tall 18-year-olds) because no coach in his right mind would risk that liability.

So, when he’s no longer a hockey player, what will he be? Well, thankfully, he’s got a bevy of other interests that really haven’t been explored, so maybe he’ll be a musician (he plays piano) or a scientist. He’ll read, and write and draw and strategize and tell jokes and ride his bike.

Being a hockey player was big for him, but what being a hockey player taught him will continue to be big for his future. He worked and sacrificed for his team. He learned to work with people he didn’t necessarily like, and take direction from adults he didn’t necessarily agree with. He learned to lose with grace and more importantly, win with compassion. He learned the importance of attitude, and the impact that can have on your performance. He became a coachable kid, and his classroom teachers say it shows.

Once we read an article about the man who was attending his son’s last hockey game. The boy was giving up competitive hockey to attend university. My son had once dreamed of doing both. Because he’s on the far right of the IQ curve, he wondered about playing for the Ivy League and sported a Harvard Hockey sweatshirt at 8 years old. We are faced with attending our son’s last competitive hockey game, not of his choosing, and how we navigate this next year will make a difference.

Our hearts break with every doctor visit when once again, he hasn’t grown. Our hearts ache as we hear from coaches how well he plays “for his size.”

When we say goodbye to this sport, to the rink, it will be bittersweet. Like watching our son’s first heartbreak. His first love is being snatched away by a bigger, stronger kid. But we will always remember the joy it brought, and be grateful for the smiles.

Nick and teammates celebrating their 2018 state title after defeating the team that had cut him.

Making mom smile.

If you're a mom, think about what makes you smile... chances are it has somehting to do with your offspring.  If they're little, you may just need to picture their smiling faces. As they get older, it may be the little nuggets of gold that come out of their mouths.

Nick makes me frown sometimes. I try not to share that with the general public. In fact, I've been told that I seem to think Nick is perfect. Well, I don't. My husband and I are constantly battling whining, bad attitudes and smart mouth comments. But he's 7. I don't think he's all that much worse than other kids his age, and I figure if a mom can't brag about a kid, who will? So I do.

Today's golden nugget came out of the blue. Many times, I'll admit to grabbing the "teachable moment"... to the point where I feel like my time with Nick is made up of "Yaseetimmy" moments. (From the TV show Lassie. Every episode ended with Dad lecturing on the moral of the day's episode... "You see, Timmy...")

I grab teachable moments on the el (bad examples of loud teens, good examples of young men offering their seats to older women), on the playground, in restaurants and of course, on the ice.  Ever since he was 3 years old, Nick has heard me tell him that there are only three rules: 

1. Be nice.
2. Have fun.
3. Always do your best.

These have had variations depending on the situation. "Be nice" generally gets translated to "Play Fair" in sports, "Obey the teachers" in school or "Help others" in a variety of situations.

Today I think I am going to celebrate this first rule, and it's full and complete absorption into Nick's life.

While sitting in McDonald's for breakfast (a rare treat, no junk-food lectures please), we were talking about baseball. An older man walked past our table and looked at us. I didn't notice any sort of "look," just looking like you do when you are glancing through a restaurant.

After he passed, Nick told me he thought the man looked sad, and that maybe he wanted to sit where we were sitting. He got up and was going to offer him our table (even though the place was mostly empty). Then he saw the man and his wife had secured another table not too far away. Satisfied that the man had secured an adequate substitute, Nick sat back down. I was chewing, and he took a bite, so we didn't say anything for a moment.

After a minute of silence, Nick swallowed and said, "You know mom, it feels good to do nice things for people."

What do you say to that? I answered "Yes Nick, it really does."

Made mom smile.

Our "SOMETHING BIG"

Did you ever wonder if your kid was listening? Feels good when you find out he has been.

If you've read this space before, you know that I have a little bug about epilepsy. I hate that so many people don't know about it. One friend coined the phrase "awarenessing" for what I do during Epilepsy Awareness Month (November). I spend time and energy on Twitter, Facebook and on blogs, commenting on statuses and sharing statistics, all in an effort to "Awareness" everyone about this awful condition that steals the lives of so many (50,000 Americans each year).

Turns out, Nick has been listening. And our little man has decided he's going to do some awarenessing of his own.

But I've gotten ahead of myself.

Almost three years ago, Nick heard about epilepsy. He knew his cousin Jenny had it, but she lives far away. Then Danny Stanton came into our lives. Danny was a happy, athletic, silly, smart 4 year old... and so was Nick. Now Nick is almost 8, and Danny never will be.  Epilepsy killed Danny. SUDEP (Sudden Unexplained Death in Epilepsy) took Danny one night while he slept in his own bed; the one place you think your little one is safest. When we heard that, our family, like so many families who have learned about Danny, was changed forever.

You see, at that point Nick started to really learn about Epilepsy. He learned that there is no cure. He learned that sometimes you die from it. He learned that he could get it at any time, and no one knows why. For that matter, he learned that dad and mom could get it too. You're never too old or too young for epilepsy to destroy your world. Then the light bulb went on: his cousin Jenny, whom he loves very much, has a form of epilepsy. She could die. 

From that point forward, Nick has wanted to help children with epilepsy. He collected money for Purple Day, even in the freezing cold. He gave more than half of his birthday gifts to Help the ELF, an organization that donates seizure-safe toys to local children's hospitals with neurology units. Last year he donated his "sharing money," in nickles, dimes, quarters and crumpled dollar bills, to the Danny Did Foundation (named for Danny Stanton). He has participated in Buzz Cuts, Basketball Clinics and Bake Sales for Danny.

But now, almost-8-year-old Nick is ready to do his own thing. He doesn't bake and he isn't crazy about basketball. He'd rather his hair grow long these days, and will skip Buzz Cuts if mom and dad let him (not gonna happen). Now Nick is old enough to know what HE wants to do.

If you know Nick at all, you know what I'm about to say. Nick LOVES hockey.

When he isn't skating, he's counting the days until he is going to the rink. Once, when informed that even the Chicago Blackhawks take a day off to rest once in a while, he looked puzzled and asked, "But why would they EVER do that?"

So Nick has decided what he wants to do this summer. He wants to help the Danny Did Foundation, but he wants to do it HIS way. He knows that the Danny Did Foundation helps children. They buy seizure detection monitors for people who cannot afford them. They print information for parents so that no one else is devastated by SUDEP. And the Stanton Family and the Danny Did Foundation have taught Nick something else important: Enjoy Life. He knows that this is what Danny did every day. By skating as much as he can where ever and when ever he can this summer, Nick will be really enjoying life, just like Danny did.

So this summer, Nick will skate for Danny. Specifically, Nick will skate 100 miles for the Danny Did Foundation.

Round and round; one lap at a time; one mile after another; in five mile increments; Nick will skate 1000 laps around NHL size rinks to complete his goal of 100 miles (50 forwards and 50 backwards). He will do it any time, and at any rink that will let him. His goal is to bring Danny's message to 20 different rinks around Illinois.

Nick wants you to take this 100 mile journey with him.

Please support Nick as he supports the Danny Did Foundation.  Check back often to see where and when Nick will be skating. Please come. Learn about Danny, and cheer for the little boy who wants to teach you about epilepsy.

Perhaps Ignorance is Bliss afterall

I've been thinking lately about Cece. She was just three. If you look at the Facebook page you see the wild curls and freckled face of a three year old. Unless you read further, you have no idea you are looking into yet another death from SUDEP. You have to read the page for the tears to start.

Cece had Dravet Syndrome. So did Reed. He was not quite 2 years old when he died. Dravet Syndrome is just one of the 40 different forms of Epilepsy.

If you don't know about it, it really is not so scary to know that 3 million Americans have Epilepsy.

If you don't know the whole truth, it's easy to walk away from stories and think "Phew, it's not my family or my child."

Once you know the truth however - every name, every smiling face, every one of these unexplained deaths by Epilepsy will rip out your heart. Put yourself in the shoes of these families, and the sobs grow stronger.

The truth is that no one knows why some people develop Epilepsy and some don't. The truth is, that even if your 4 or 12 or 27 year-old child has never had a single seizure in his or her life, by this time next year, you could be in the middle of this nightmare. Research cannot point to a cause for most cases of Epilepsy. So there's no way to say: "If you do this - or if you don't do that" you will never get Epilepsy.

My son asked me once "Will I ever get epilepsy mom?" There is only one honest answer: "I don't know."

There is no way to know that you, your spouse or your child won't have this condition next year - or even next week. And once you get it - the whole truth is - there is no cure.

And there is more, even harsher truth. If you develop Epilepsy and are one of the lucky 2/3 who can control the seizures with medication - there is no way to know when or if it will return. And sometimes the return is deadly. SUDEP is Sudden Unexpected Death in Epilepsy Patients. It's a fancy medical euphemism for "Oh Hell, we don't have a clue."

6 weeks after learning of the death of Danny Stanton, I heard a teacher say "Well, it's not like you can die from Epilepsy." And I began - 50,000 unexplained deaths annually from Epilepsy haunt me. Danny, Cece, Piper, Abigail, Chelsea, these are just the ones I know of - I want SUDEP to bother everyone - so if given the chance - I will tell you about it.

I will tell you Danny's story - and I will likely cry.

Lastly, I will tell you about my niece, Jennifer. She has Dravet Syndrome, just like Cece and Reed. Dravet is a catastrophic diagnosis. There is no hope for outgrowing seizures, and little hope for controlling them. At 4 years old, Jennifer was on a steady regimen of dangerous medications and had already undergone major brain surgery. She has a pacemaker implanted in the base of her brain. And still, trips to the ER for uncontrolled seizures don't stop. At 5 years old she began to turn blue during her seizures, and more than once her mom (my sister) had to administer chest compressions to her little girl while waiting for the paramedics to arrive.

So if you see me - and ask about the purple ribbon I wear, I will dispel your ignorance and tell you the truth. For the Month of November (International Epilepsy Awareness Month) I will be wearing purple - ask me why, and I will tell you these truths. I will destroy your bliss. I will no longer allow children to suffer and die because no one knows the truth and no one talks about it. It's time to know - about Piper, and Danny, and Cece, and Reed, and countless others.

I remember before Jenny was born when I knew nothing about children dying due to epilepsy. I too, believed that epilepsy couldn't kill you. Life was simpler. I didn't cry as much.

But it turns out, ignorance is NOT bliss after all. It's just ignorance, and when it comes to epilepsy, ignorance is fatal.

Get informed. Get engaged. Make a difference.

Time to go...

"Preparing for a vacation is seldom easy. There are about 100 million things
to remember - add a 5 year old, and plan to go somewhere you've never been (so
you don't really know what to pack), and there can be a great deal of stress in the preparation.

One of the biggest problems however, is ME. Because while I am packing and prepping for a vacation, I am already there. I think at some point in my life I did live in the moment. But today I live in the future. And I don't like it. Because in my
future I am already back from vacation and back at the job I don't like, and
back failing at another goal."

Just a minute... was that really ME? Yep, while cruising through the list of unposted entries that sometimes queue up, I came across this most depressing whine. How on earth does one live like that? When (in reality) I have everything I could ever desire. My husband, son, life, love, faith... this entry surely must have been lurking in the shadows all these many months for a reason. Things get lost in cyberspace all the time - but not this depressing piece of drivel. Find the lesson... what does it mean... ??

I've GOT it! How about just this: "Quicherbichin!"

Yep, that's probably it.

A few months (and a different job) later, I wonder how, looking forward to a vacation could have made me so awfully depressed. Luckily, it didn't last!

I sometimes forget

In the midst of the bitching and complaining, of the sighing and whining, I sometimes - no, I often forget how fortunate I am. Once again, I have had to be schooled in gratitude. The problem is, I take no joy in these lessons. The reminders to be grateful always - - and I rarely use the word "always" - but the reminders to be grateful ALWAYS come at someone else's expense.

Today - and for the past couple of months really, I have not been able to get enough 'hug-time' with my 5 year old. Not only do I work too much (yes, at a job I don't like... but you know that already), but he has reached a point where hugs and kisses are generally barely tolerated. If I catch him at a particularly sleepy moment, or right after he bumps his head, he'll willingly take a snuggle and a kiss. But for the most part, he runs away from my affection.

I know this is normal - but it's incredibly bad timing. Because two months ago I began appreciating Nick more - really seeing his smile and committing it to memory. I began holding every last hug until the latest moment he would allow - and I swear - because I am paying more attention now - I can close my eyes and feel his hug wrapped around my neck.

My renewed gratitude comes as a direct result of the pain and suffering of the Stanton family. Danny Stanton, just four years old, died on December 12. This was not a tragic accident - not a careless driver - not a daredevil fall. Danny passed away in the night - safely (or so they thought) asleep in his own bed. No stranger-danger, no boogyman, no one to blame. I don't need to recount the story; several news outlets already have, and I would just start to cry again. Do a Google search for "Danny Stanton." There's a lot to read. Their boogyman was Epilepsy - Sudden Unexplained Death in EPilepsy, specifically (SUDEP).

To my amazement, his parents Mike and Marianne Stanton, have appeared on a few talk shows, been interviewed for the some newspapers, and have started a foundation in their son's memory. Personally, I'd be curled up in a ball under my bed. Through the Danny Did Foundation they are preparing to change the world.

I read about what they are doing - about what they lost - I see the amazing photos of a little boy just a few months younger than mine - and I cry. It is said that God only gives us what we can handle. I am grateful that God knows me for the sissy I truly am.

If you don't know Danny Stanton, get to know him now. He and his amazing family, and his most captivating smile - will surely change the world. They have certainly changed me.

Take your time... Engage Others... Enjoy Life... Danny Did.

Withdrawls from the memory bank

You know how every year or so the treasury department will run a list of names in the newspaper of people who have money they forgot about?

First off, let's just clarify: this doesn't happen to me. Or my husband... or my siblings. In 41 years the best I could hope for is the occasional quarter in the couch cushion, if I'm really lucky the lost $5 bill recovered from the pocket of last year's winter coat. More likely though, I'm the person you're stuck behind at the drive-thru scouring my car for the last nickle I need to pay for my morning coffee.

What does happen to me is the occasional recovered memory - it's not de je vous, but some weird synapse that has refused to function for a week - day - sometimes years.

We all have these moments. Sometimes it's noticeable, because you've spent all day trying to recall a movie, song, actor - only to have the answer suddenly arrive at 2am as you are drifting off to sleep. These struggles and recalls don't really bother me. Usually these are things that I really didn't ever need to remember - but more importantly - things I didn't want to remember.

But cash? Have you ever seen these published lists? There are people who have "forgotten" something upwards of a few grand. If I misplace so much as a $20, you can bet I'm going through every pocket on every pair of pants I own.

My recalled memories are of this second sort: I can't believe I've forgotten them. These are the gems that, as a mom, people tell you "I hope you're writing these down." to which you respond "Of course I am." But being a slacker mom - I'm totally not.

So now - when one comes to me, I'm going to post it here - whatever I remember, how accurate it is - how old it was...

I'm gonna make the memory bank real again.

My first withdrawl:
8 or 9 months ago, shortly after Nick started his new school, he came home one day and - with full audience of mom and dad sitting in the family room his tiny 3 year-old voice announces:
"I want some damn raisins."
Now, to our credit, neither of us laughed out loud or shrieked at him. A couple of jaws hit the ground, but in my version of the story we were quick to recover and I very calmly said:
"I didn't hear you Nick, what did you say?"
He didn't miss a beat: "I want some damn raisins."

Thank you daddy - who dropped his chin to his chest and covered his snicker, leaving me to fend for myself.

"Nick, I don't think I know what kind of raisins those are. Can you tell me what that word means?"

"Yes. It means 'raisins' in Spanish."

"No, it doesn't. Don't say it again."

You know, I can't remember if he ever got his raisins.