Falling Down

Caroline loves to roller blade.

Most mornings she puts them on first thing and as soon as she is home from school, 

they are back on her feet.  

She's content to roll around the kitchen and living room in and endless loop.

She roller blades outside in the back yard.  

She insists that it is "blading" and always corrects me if I ask her to take her skates off.

She eats dinner with them on.

She does homework with them on.

She reads books or watches TV and forgets that she has something attached to her body.

She's a wee bit obsessed.

Her happiest time of the day is when we walk our dog, Buddy.

She can rollerblade through the neighborhood at supersonic speed.

She hunches over like a roller derby queen and speeds up and goes as fast as her risky self will allow --

which is awful fast to an onlooking mom.

She's gotten good...like I said, they're beginning to just be a part of her body.

She is now practicing tricks -- like jumping over cracks in the sidewalk, or doing the
ice-skating maneuver of the one-leg-in-the-air-glide.

She's confident and proud.

And then a tiny stick got in her way.

She loves this one driveway we pass each day.

It has a big U-shaped driveway and she whizzes up one side of the U and spins and
whizzes down the other the side at top notch speed.  

One time she did it 11 times back and forth...even I was getting dizzy.

And then the unthinkable happened...she bit the dust.

It wasn't a horrible wipe-out as wipe outs go -- but she got a sizable scrape on the side of her belly and nothing else...but a big ole sense of what just happened?

She was shocked.  Stunned.  

Mortified and mad.

She was quiet as she roller-bladed home -- defeated -- and I couldn't yet tell just how injured she was so I didn't push.

At the injury inspection I made a comment about how it wasn't that bad...but she couldn't even respond.

Big, heaving, gasping cries came over her.

Tears and more tears.

I tried to cajole her into the shower...no go.

Tried to be soothing and understanding...not working.

I tried the brush-off -- really, kid, you're good...complete flop.

Then I just picked her up and undressed her and plopped a wailing, inconsolable kid into the tub.

She resisted the water, not wanting her scrape to sting, but I insisted, 

which only amped up the situation.

I noticed her forehead...speckled with red splotches like she used to get as an infant after crying really hard...and I tried to tell her it was all going to be okay...back to soothing as an option.

Finally, she leaned back into the water and let it all comfort her and released that soggy sigh that all people release after that final burst of crying, but somehow with kids it tends to be the checkered flag.  We made it.

I tried to help her notice it..."Look, Caroline, you made it over the hump.  You're going to be OK."

A tiny voice and tear-filled bue eyes looked up, 

"I think it was a stick." she reflected.

"It might have been, baby.  But, you need to know that the reason you like roller-blading is partly because of this right here.  You enjoy it because you feel excited.  You know you could fall down.  You accept that part...and you love when you don't."

"But sometimes you do."

"And then, you just have to get back up...and try again."

She slowly got out of the tub.

I snuggled my fresh-from-the-tub-girl -- a treat that rarely happens anymore.

I held her for the briefest of moments and treasured this chance.

I'm so grateful to be able to help her up and comfort her...

I hate it when they fall...

any of them.any.time.

But isn't that where so much of the real learning happens?

We all fall down.

We must get back up.

There really is no choice.

We can cry and scream and blame the stick but it doesn't matter...we will fall.

It's what happens after the fall that matters.

My Hero

"Heroes don't look like they used to, they look like you."

--Nothing More by Alternate Routes

One of my heroes is Sue Buckley.

You probably have never heard of her.

She's an older woman, slight in stature, well-spoken and honest.

Gut level, clear and sometimes brazen.

She's also British.  

So whatever she has to say, no matter how hard to swallow, feels like it has a spoonful of sugar to help it go down.

Her intelligence, her drive and her careful research

 have reformed education for people with disabilities across the UK.

Yes, folks, that entire country places their students with disabilities in regular ordinary classrooms first.

Support is given.  Intention and careful planning go into it. 

Students succeed.

If I had to distill Sue's message into a soundbite it would be this:

People with disabilities deserve an ordinary life.

Life with their family.  

Life with a significant other when they grow up.  

Life with a good education so that you can have the means to have an ordinary job.

A full, ordinary life.

That's all she wants --

and yet, it's revolutionary in so many places.

This week-end I had the privilege of hearing Sue speak

and advocate

and share her vision.

She was stern.

Indicting all parents who let their child with special needs have poor behavior.

She was funny.

Sharing stories and attempts at searching for this ordinary life for her own daughter.

She was incredibly articulate.

Reminding all of us of how important it is to strive for inclusion and why it matters.

She was bold.

Creating educational models that can be replicated easily and aren't costly, basing it all in research.

****

There, among the crowds of people yesterday, were new parents.  They were holding their tiny babies with Down Syndrome and being washed in acceptance.

It must have felt like a baptism for them.

There were educators who have dedicated their entire lives to the vision of full inclusion...renewing their vows, so to speak, redoubling their efforts, reaffirming just how important this work is.

There were parents who hold close Sue's vision too.

Clinging to her every word.

Spontaneously clapping.

Crying silent tears in agreement and urgency.

There is no time to waste.

And then there was my crew...

mothers of children with Down Syndrome who know in their souls and hearts that the efforts to fully include children with disabilities in Catholic schools is a sacred mission divinely guided.

We were from mostly California...

Napa, Davis, Manhattan Beach, Sacramento, Roseville, Costa Mesa.

But we had friends from Arizona.

And a mom from St. Louis, Missouri who out of desperation formed a Facebook group a year ago that has grown and ricocheted across all sorts of places and created a tidal wave of energy with it.

It was a shout into the void.

And people answered.

She jumped on a plane to be with her tribe and it was right.

Exactly right.

Thrilling.

For both nights that we ate out as a group,

a child with Down Syndrome that was unknown to us came up to our group...

two different kids

hugging us,

reminding us, 

encouraging us in our mission.

My friend, Michelle, called it a "God-cident".

It was like a sprinkle of fairy dust.

Or the slightest whisper of love.

Or the sparkling rocks that guide your way on a dark path.

Any way you describe it, those children felt heaven-sent.

As I watched Sue, 

I thought of these mothers who have no formal program, 

who have nobody funding it, 

no real guidance -- except each other --

who only have the very same desire that Sue has...

a chance for an ordinary life for their child with Down Syndrome, 

learning alongside of his/her siblings, 

making Communion and Reconciliation and Confirmation in their faith community,

singing in the Christmas pageant, 

playing kickball and basketball

just like anybody else.

On my way down Jamboree Road in Newport Beach, a song came on the radio.

I was all alone when I heard these words:

To be humble, to be kind.

It is the giving of the peace in your mind.

To a stranger, To a friend

To give in such a way that it has no end.

We are Love.

We are One.

We are how we treat each other when the day is done.

We are Peace.

We are War.

We are how we treat each other and Nothing More.

Another whisper...another arrow pointing the way.

How we treat each other and nothing more.

Let us remember the heroes,

unsung, 

humble and kind,

who show us how to treat each other

and nothing more.

For us, those heroes have names:

Patrick, Chris, Gretchen, Thomas, CJ, Raymond, John Michael and Adam.

Mia, Savannah, KC and Roberta.

They want an ordinary life.

They are full of ordinary grace.

It is our job to make it happen.

Let's do it.

Our revolution is under way.

Join us.

The Map

"There is something beautiful about all scars of whatever nature.  

A scar means the hurt is over, the wound is closed and healed -- done with."  

-- Harry Crews

I don't often see Patrick without his shirt on.  He's 14 years old and into privacy.  He takes his own shower, figures out his own clothes, always remembers his deodorant and out of my three children that can maneuver through this process on their own, he is the only one who routinely hangs his towel up.

So, it was with some surprise that I walked in on him looking at himself in the mirror, touching a rough spot on his chest, analyzing it and thinking about it.  At 14, like almost all the others, he cares about what he looks like.  He wants his hair to be cool.  

He loves to dress up with a tie and jacket.  

This stuff matters.

I could see him feeling his skin like a blind person reading Braille.  He wanted to know the story behind the scar.  

He didn't remember receiving it. But, I did.

The scar looks like a hashtag that might appear on Instagram.  It's faded but rough to the touch.

I touched it too...and like some sort of portal, I traveled back in time.

There on the center of his chest, right next to his breastbone was the entrance to what once held a Broviac. A Broviac (for the lucky people who have never needed to know that word) is a way of giving chemo directly into your body.  It also happens to be a way to take out blood as well.  Pediatric oncologists often suggest it as the best option for young children with cancer because of that blood-taking option -- fewer sticks with a needle then.  

But from my viewpoint, I'd tell anyone to go for option two...the port-a-cath.

John and I affectionately called the Broviac, the "X-files thingy" -- truly a scientific medical term if there ever was one.  The Broviac was a tube that hung out of your chest.  It required a tape over it and a netting to be worn like a vest over the entire chest so that it would not get pulled out.  It was next to impossible to bathe in.  It was hell to clean, not to mention life-threatening if we didn't clean it right.  At the end of each week, we needed to push Heparin into the Broviac and clean the area around it.  

There Patrick would sit, the most stoic three year old on the planet, letting us clean raw skin and push medicine.

All that is left of that awful, horrible time is the hashtag scar.

Tonight, I told him the story of his bravery and his poise.  I admitted that while I was afraid of it, he was not. 

He looked at me in a shy, proud way...

and he asked about the next scar.

This one was a three inch horizontal line about three inches down from his left hand collarbone.

That was where the Port-a-cath was placed.

After the x-files thingy came out...which was a Defcon 10 on my fear list, they casually replaced it with this.  This beautiful invention goes under the skin.  It's about the size of a fifty cent piece, circular, and attaches to a vein.  It has a sponge-y center where the medicine goes in.  You numb the area and then push the meds/chemo when needed.  But since it is under the skin and nothing needs cleaning, once the meds are done, you're done.  Free to go and live your life.  Go swimming -- no problem.  Take a bath -- a breeze.  Play in a water slide -- fine by me!  It was a miraculous transformation.  Patrick was four when he got the port-a-cath placed and we were a new family.

They "accessed the port" (don't we sound like we're in Star Wars?) whenever he had a chemo treatment, which was about once a month.  

Patrick was so zen and unafraid about the accessing that other children who were fearful would watch Patrick and see how easy it could be. 

He was fearless at four.

Pretty stunning way to live.

That scar tells that story and Patrick heard it tonight.

He asked if he had any other scars and I pointed out the tiny one on his neck.  It was part of the Broviac nightmare and truly I blocked it out.  I just embellished the other Broviac story and told him he was ready for his shower now...

except then I had to take my index finger and smooth his open heart surgery scar that runs right down the middle of his chest a good eight inches long and thick.  Like I had a bubble of glue under a paper craft, I smoothed that skin, petted that scar and reminded him of that amazing badge of courage.

That scar is hard to miss.  He knows that story so I mostly skimmed over it, like a favorite fairy tale.  

I could give the Cliff Note version.

He asked to see my scars.

I have only two.

One from a hernia operation when I was two -- a whisker thin three inch scar way down low on my tummy -- and one on my finger -- a Girl Scout camping accident with a sharp tin can.  

My stories show no bravery.  No zen-like calm.  No resilience.  No grace.

Like ports of call on a map, Patrick heard his story.  

The hero stood down a foe.  He maintained his cool.  

He bounced back from mortal adversaries and held his own.  

Mostly, he did it with effortless grace, good humor and kindness, fearlessly.

What's a little hashtag scar or two when you've done all that?

You're made of powerful stuff my boy.

I'm glad you finally heard it all out loud.

After all that horror, fear and dizzying sadness all that's left are the scars...and the stories.

They're both pretty beautiful now.

It Happened!

"We all have our own life to pursue, 

our own kind of dream to be weaving...

And we all have the power to make wishes come true, 

as long as we keep believing."  

--Louisa May Alcott

Last Friday, after years and years of trying, five different bicycle camps, three different bicycles and a whole lot of wondering if it ever would happen...Patrick rode a bike.

He didn't just ride it for a short distance. He's been able to do that for awhile.  

He rode it for three miles...out on a green belt, to a duck pond and back.

He came home sweaty and wiped out...but he came back a bike rider.

Hot and sweaty...still needs to get home...but a bike rider none-the-less.

In his mind, during that ride, he made the leap.

He jumped over the mental hurdle.

He now believes he is a bike rider.

He feels it.  He knows it.

He freakin' did it!

When he rode up to our house,  I ran out the front door clapping and cheering and crying like the guy had just won MVP at the Superbowl and we were going to Disneyland.

I was jumping, hugging him, holding him by the shoulders and telling him so loud 

and so over-the-top how proud I was that he had done it.

He got that small, shy smile that they all get.

You know the one.

The smile is one part: 

"Hell yes. I know. I did it.  I'm awesome."

another part: "Still trying to wrap my head around it...hey, wait, I did it."

mixed in with a smidge of "It's really no big deal, don't know why you're freaking out."

He got embarrassed that I was making such a big deal about it.

Our neighbor who is Mr. Gruff, Let-Me-Ignore-Those-Crazies-Next-Door, actually walked across the street 

and shook Patrick's hand.

I swear that Patrick can thaw even the coldest of hearts.

It was another awesome cherry on an already huge sundae.

Sarah, Patrick's amazing aide and personal friend to all of us Forakers, was the one who helped seal the bike riding deal.

You see, when you're 14 and you know your mom wants you to really do something, you can't help it, you push back.  

It's just in your teen-age DNA to refuse.

So, I couldn't be a part of it.at all.

Even though I really wanted to in my interfering-mom-knows-best way.

I had to hand it off, like the proverbial baton at the Olympic trials, and let her run.

The chick knows how to motivate.

She used every tactic available.

Donuts, music, cheerleading, videoing, deal-making...but mostly, her own belief that he could and would do it.

Day after day throughout the summer they practiced.

Day one was rough.

He couldn't get his balance.

He couldn't fit the bike.

He didn't believe he could do it...and so he didn't.

But, like the faithful friend she is, she just kept at it.

Kept encouraging.

Kept nudging.

Kept pushing...farther and farther.

Before we knew it, he started making the mental shift.

He started telling her that he could go further.

He started showing off.

She could no longer run beside him...she needed a bike too.

And that was the day they just rode and rode -- all the way out to that duck pond.

Yesterday, Patrick in the early morning suggested that we ride our bikes to school.

I smiled.

How do I say no to that?

He's still wobbly on the take off.

He still needs waaaaaay more practice with riding on the street and navigating traffic and other distractions...but he can do it.

Now all he needs are just hours under the belt.

Because now he believes.

He is a bike rider.

And we all know that being a bike rider is way more than having a new way of getting from Point A to Point B.  

Patrick got a little more freedom last Friday.

He got a ticket to expanding his world.

Just like the gift of learning to read, riding a bike affords him a little more independence and a whole new way of seeing the world.

I've been steeped in a full, grateful heart all week.

What can you say to someone who helped your child in such a profound way?

What can you give them to show your appreciation??

I gave her the only thing I had to give: my tears and my full heart.

I looked her in the eyes and told her that the day her first child rides a bike, maybe, just maybe, she will understand what she has helped to give Patrick.

But for now, all I can do is surround her with my love and appreciation every single time I go for a ride with Patrick.

I live in a bike riding town.  

You can bet that I'll be riding with Patrick all over the place...

each time I will send some sunshine Sarah's way -- she'll feel it.

I know it.

So today I'm grateful for two blessings: Patrick's own determination and ability to just keep trying...

no matter how many times it didn't work.

And I'm grateful for Sarah's enthusiasm, her coaching, and her perseverance through some 

hot, tiring days that looked awfully bleak.

Together they made it happen.

Unbelievable what friendship, faith and determination can do.

They make quite a team.

Our Olympic Moment

"The most important thing in the Olympic Games is not to win but to take part, just as the most important thing in life is not the triumph but the struggle. The essential thing is not to have conquered but to have fought well."  — Olympic creed.

Four years ago, out of complete and utter desperation I did something crazy: my non-swimming almost ten year old joined a swim team.  Gratefully, the founders of the team, a husband and wife dynamic duo named Pete and Koren Motekaitis, didn't just allow Patrick to join, they welcomed him with open arms.  To add to the irony, Patrick would practice at an olympic-sized pool on our local university's campus.  It was thirteen feet deep.  

Patrick had tried traditional swim lessons; he had tried just enjoying the pool of friends and family; he had private lessons, official Red Cross lessons, and even lessons at a fantastic private pool with the most patient and loving of swim teachers...all with little to show for it.  He could get his head wet and he could (kind of) float and he always had his secret weapon: his good-natured ability to just keep trying something that was easier for so many others.  But, no matter how he sliced it, he couldn't swim.

So, my good friend Michele kept nudging me toward the Aquamonsters and finally I made the emails and paid the money and we showed up.

That first year, his teacher was a college student who swam for an Ivy-league school during the school year.  She was the one who coaxed Patrick into the pool and agreed to hold the board for him if he would kick across the pool.  She would swim backward, holding the kick board, talking to Patrick and distracting him from the amazing, crazy thing he was doing. For about 8 weeks, Patrick and Emily did the kick board tango and I never will forget the random day in August when Patrick felt strong enough or confident enough to kick the board all on his own.  Emily was there, kicking her own board right next to him and they spent the last week of summer kick, kick, kicking side by side lap by lap.

The following summer Patrick was graced with an enthusiastic coach who was a top diver for the UC Davis men's team.  Jason insisted on "dry land" work before swimming.  So there Patrick was with a crew of younger kids holding his weight doing the plank and assorted other yoga moves designed to strengthen his core on the hot cement deck and then swimming.  All summer, he used the kick board.  Jason, Matt and many other coaches tried to talk Patrick away from the board without success.  However, like someone learning a new language, once in a while we would see a broken bit of fluency and be rewarded with a leap of growth.  By the end of another solid eight weeks of swimming, Patrick floated, glided and used his arms and legs enough to call it swimming.  Of course, I wasn't there to see it...but I got the call from Patrick afterwards and heard in John's shaky voice that a miracle had occurred.  As John relayed the shouts on the deck and the sheer victory that the coaches felt when Patrick swam for the first time, I was more than touched.  Here are these high level athletes hugely invested in Patrick's success with swimming -- it was a testament to the vision for Pete and Koren's Aquamonsters and the ability to live and breathe the motto

 "Every monster matters."

Last summer was Caroline's turn and she willingly jumped in that deep pool and began swimming with the help of her coach, Paul.  It was incredible to see her just go for it day in and day out.  Her belief in herself propelled her into becoming a swimmer.  On the day that she swam across the pool on her own, she promptly jumped out of the pool and said, "Now I'm ready to race!"  She would have to wait a year to be old enough but she was ready.  Meanwhile Patrick was chug, chug, chugging along.  He was swimming but it wasn't pretty and it wasn't for very long distances.  Pete thought Patrick should consider doing a meet.  I deemed that unthinkable...maybe next year.

And so here we are...Patrick is swimming in the same group of kids with Caroline.  Together they swim, practice side breathing and actually learn other strokes from their master instructor and coach Paul.  Like a gigantic puzzle with only the final pieces left to place, we can see everything fitting together.  Patrick can get close to 3/4 of the way across an entire lap without stopping, but he still grabs the lane line as a safety net.  He can do the back stroke, very crookedly, but he can get from Point A to Point B.  Caroline works on flutter kicks and basic strokes.  She can often blend in with the crowd of swimmers using this pool and pass herself off as a legit swimmer...it's wild!  

So it only made sense that Pete would notice this too and push a little harder..."It's time for a meet, Beth.  Get out of his way."  I took his chiding seriously since Pete knows the territory of parenting a child with developmental disabilities.  His son is an adult now, but he's coached enough kids with and without special needs to know when to push and when to believe in the impossible. We agreed...it would happen July 7th.

Like some parallel Shakespearean plot, Pete would be taking his one and only swimmer that he had been personally coaching ever since the dissolution of the UC Davis Men's Swimming Team in 2010, to the Olympic Trials days before our big meet.  Scott Weltz, a breastroker and Aquamonster coach himself went to Omaha to test himself against the best.  He was an underdog and completely off the radar to those on the outside.  

Not for Pete and Scott.

  They knew what they had come there to do..."swim at night" (make the swimming finals in your event).  They tested the waters with the 100m Breaststroke.  Scott created a buzz by getting into the finals, "swimming at night" and getting in 4th place.  (The top 2 get to go to the Olympics.)  That wasn't even his event so he was primed and ready for the 200m race.  Scott raced in the prelims and easily made it to the semi-finals.  He came in first in his semi-final race and was ready to take on the former world record holder and the current American record holder along with a host of others.  Dreams do come true!  Scott didn't just swim at night.  It all came together in a 2:09.01 perfect race. He dominated the race and decidedly won -- Incredible!!! Together Scott and Pete are in London this very minute -- cheerio!!!

Only days after Scott's tremendous success and unbelievable win, Pete was on a flight back to our little town to lead a bunch of young swimmers through an ordinary, very local meet.  On this blazing day, Patrick had to swim with the 12 and unders...all swimmers who can dive into the pool to begin the race.  Patrick was allowed the benefit of starting in the water.  He also had a swim coach swimming alongside him just in case it was all too much.  The whistle blew and away he went.  He would have to swim 50 meters -- there and back -- because of his age.  As he swam the first 25, I noticed that he wasn't using his arms at all.  He paused halfway through and hung on the lane line for a breath (suprisingly, this is not an automatic disqualification).  As he got to the wall, who was sitting on the diving block waiting to coach Patrick directly...Pete.  

Pete Motekaitis.  The man who just had the biggest achievement a swim coach can have just days before at the US Olympic Trials; the man running a meet for a few hundred swimmers; that man found his way to the wall at the 25 meter mark for a swimmer who really wasn't a swimmer, leaned down and said, "Patrick, use your arms."  That tiny act of kindness that I guarantee nobody else on the pool deck took note of sent a rip tide of a message: You are important.  You are worthy.  You, who will come in last place, possibly be disqualified and need to hang on the lane line to catch your breath, yes, even you, get my time and energy and focus.  Every monster matters.

Through Pete and Koren's example, time and time again our family has been included and accepted and  integrated into a club of amazing athletes.  This feeling of welcome and belonging is such a rare gift and so natural for these two that they don't notice the irony or the juxtaposition of swimmers.  But I do. Olympian Scott Weltz, Aquamonster Patrick Foraker...it really doesn't make a difference.  You work hard.  You practice hard.  You make your weakness your strength and you try for a personal best.  

It's all about the personal best.

So...you can bet that six Forakers are going to be rooting for a certain coach swimming in London.  Scott Weltz, Olympian, Aggie and Aquamonster coach, we know you have another personal best in you.  Go for the gold -- for all of us.

Every monster matters...Pete and Koren say it's so.

They live it...it's up to the rest of us as well.