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.

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.

My Ugly Shoes

I have a friend named Beth who has a daughter that has been battling childhood cancer since last August.  She is finished with treatment but still fragile.  Any illness is a worry.  Any weird symptom takes her to that dark place.  Anything but her daughter being her bouncy, joyous self brings the shadows, the worry and the heartache.

I know it well.

May 16th, 2002, Patrick was diagnosed with Acute Lymphoblastic Leukemia.

August 2nd, 2005, he finished all treatment.

He is considered cured.

Yep. Miracles happen.

Smart people, devoted researchers, tender nurses, vigilant doctors change lives and create some sort of critical mass.  A deadly diagnosis just a few decades ago is now curable.

It's a hellish process but you get there.

Here he is:

Celebrating St. Patrick's Day 2013 at a pub with his dad and big brother.

He gets to live his life. Try new things.  Contemplate girls and dances and traveling and what high school will be like.  

He has a future...because somebody lost theirs.

I can't help but hold close all of the children who came before Patrick.  Those that tried new treatments, new tests, new therapies and got to the point that they'd try anything.

Those that knew they wouldn't make it and still they tried.

Not long ago, childhood leukemia was a death sentence.

For some types, it still is.

But the people at St. Jude's kept at it. 

They wouldn't give up.

St. Jude, the patron saint of lost causes, let them keep trying.

St. Jude's Hospital in Memphis, Tennessee, still takes the lost causes of children's illness.

They still work tirelessly on the most devastating diseases.

They work miracles everyday.

St. Jude's is special, very special.

I like to tell this story so that people can stop feeling just good about St. Jude's and can start to feel in awe.

There was an incredible research scientist that was from Australia.

There was no hospital in Australia that was like St. Jude's.  Nothing even close.

He decided to take all of his training and his passion and move back to Canberra to replicate St. Jude's over there.  

He got big donors.

He got amazing researchers together.

He built a state of the art research center for Australia.

For six years, he gave it a go.

It failed.

This doctor who gave all of himself over to this mission had this to say about it:

"There is no place like St. Jude for a scientist.  There is a terrific atmosphere in the highly interactive clinical and basic science programs, and the tremendous levels of funding make it all possible for me to do my research without interruption." 

--Dr. Peter Doherty, Nobel Laureate in Medicine, St. Jude Children's Research Hospital.

Dr. Doherty doesn't say it out loud but I will.  Something very holy and sacred is happening at St. Jude's.  Something that is intangible.  Something that can't be researched or itemized but something that everyone who has been there knows...a greater power is part of the solution there.

Patrick's amazing doctor, Dr. Jolly, did a three year fellowship at St. Jude's.  He knows.

We know.

Patrick benefited directly from that research and that sacred work.

He has his life today because someone dared to fight against the lost cause of leukemia.

Today my friend, Beth, posted this poem:

SHOES
I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I don’t think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
I can tell in others eyes that they’re glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I’m not the only one who wears these shoes.
There are many pairs in this world.
Some women ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has a child with cancer.
-Author Unknown

I know those shoes well.  They've been at the back of my closet for awhile, but I still know them.

I wish I didn't.

However, I'm grateful today for all of the others who have worn those same shoes before me.

Those that took a chance and searched for the impossible.

I'm grateful to the mothers and fathers who had nowhere else to turn and were welcomed into St. Jude's.

I'm grateful to Danny Thomas for creating a powerful place of hope and care for the worst cases and the most desperately ill children in our country.

I'm grateful for miracles, most especially the one who shares my world. 

**If you want to say thanks, send a donation to St. Jude's.  Trust me, they will use your money well.**

End It Now

See this guy:

He's a guy with Down Syndrome. 

Does that diminish his light?

Is he worth less?

Does he deserve an education? Medical treatment? Access to his own money?

All of those basic rights are denied people like Patrick everyday.

Some people believe he should be separated...in school, in sports, in the world.

Why???

Because they have lived in our world.  

They have heard the words.

They have had those ideas of separation and difference work their way into their view of humanity
and into their bloodstream of personhood.

Words like: retard and idiot.

I know you don't want to think it or get all PC, but words hurt.

Heck, words kill.

Words that diminish and dismiss make it easier to keep people outside. 

Words like that make it easier to separate and hate.

Words like that make it easier to disregard someone worthy of knowing.

They keep us apart.

They divide.

Using words like retard perpetuate MISunderstanding and DISability.

Can you just stop?

Stop using the words.

Stop leaving people out.

Stop feeling better about yourself by cutting someone else down.

Stop thinking it's funny.

Every single time you use that word -- or stand by while someone else uses that word -- you allow bigotry to continue.

You vote with your mouth for separateness and distance...exclusion and excuses.

Today I vote for inclusion.

Today I vote for flying my freak flag.

Today I vote for enjoying diversity,

cherishing every single hue, 

genuinely acknowledging the priceless gift of every human on the planet.

Everyone is worthy of dignity and respect.

Everyone deserves to be honored for their unique beauty and grace.

Today make a choice to change your language. 

By changing your language, you make the choice to open your mind. 

 You make the choice to open your heart.

 You make the choice to open your world to more love, more light, and more beauty.

People like Patrick will be a little less lonely and isolated.

Imagine the day when our children have never heard of such a word.  

Where we have to explain the bigotry and the separateness that no longer exist.

That makes me smile.  It's worth the work.

All Wrapped Up With A Bow

"Success is not final, failure is not fatal: it is the courage to continue that counts."             --Winston Churchill

 It's strange how it happens...how literally one day you feel the hopelessness, the frustration and the undeniable truth -- it's just never going to happen.  You can insert whatever blank you want to in there...it's never going to happen that I: meet the right guy, get pregnant, find a job, finish school, figure out where to live, finish that giant project or in my case -- watch Patrick tie his shoes.

Yesterday, if you would have asked me when it was going to happen I would have said: "He's close, really close, but we've been close for months.  I just don't think it's going to happen.  At least not for awhile."

Somehow, because my heart went there yesterday, it's almost as if the universe wanted to prove its unpredictability.  Sure, Beth, close yourself off.  Believe it's not going to happen and then just watch for tomorrow's little ray of sunshine.  You can't will your heart to believe other things.  Sometimes, almost every time, it needs a little lesson in recognizing the miraculous.

Today is THE day!  Patrick tied his shoes all on his own.  I heard the yelling from another room: "Mom!  Mom!  Come quick!  I did it!" He had his shoe up on the coffee table and he was just gazing at his accomplishment. "I did it, mom!"  His face full of satisfaction and pride was undeniable. My heart could not get over the stunning revelation.  But yesterday? Yesterday it was not meant to be.  Today is THE day!

I had purchased Patrick's tennis shoes unwillingly.  I didn't want shoes that tied.  I wanted a velcro closure.  Mornings are hard and I wanted easy.  But, there were no velcro options in his size and I knew it was about time to force the shoe-tying issue and well, maybe I thought, this was a sign.  So, I put my game face on and told Patrick that we would be tying shoes this year.  He interpreted this to mean that I would be tying his shoes this year...um, not so much.  So every morning, Patrick begins the process and I do my best cheerleader impression:  "You can do it!  You're almost there.  Look!  You're so close. Just wrap around slowly."  You get the idea.  90% of the time, Patrick begins.  He has a great start, gets stuck in the loop wrapping and gets frustrated.  Occasionally, he will patiently deal with my hands over his hands showing him how. Once in awhile he will watch me tie it all the way but most of the time he just sighs with regret and looks away.  The accomplishment seemingly out of reach.

Lately, I've been finding Caroline tying his shoes.  Yes, that little bugger who learns so easily and adores her brother is happy to swoop in and do him a secret favor.  They hid it from me for about two days until I noticed Caroline's extreme helpfulness and King Patrick enjoying his servant. Busted!

So, I've been on shoe patrol -- making sure I was around when the process began and renewing my energy and enthusiasm for the prospect of finally mastering a difficult task.  After all, it is April.  If we don't get on it now, summer might come and force us into shoes that don't tie and all momentum might be lost. I redoubled my zeal and continued like the slow drip of a stalactite...bit by bit, determined to get this done.  But you can't force someone to learn and you can't teach an unwilling student so I knew I couldn't want it too bad.  As soon as it became my issue, I knew Patrick would back off. I had to find a balance of nonchalance and commitment.

It all came together today.  The dozen or so micro steps in tying a shoe were done in the right order, with the right amount of tension in the lace and with the belief that the tying was going to happen.  Like magic, it did.

Today, everybody in my house can tie their shoes which means that every single person can also tie a bow on a gift or decorate anything they would like to with a bow.  Today my day came wrapped with three bright bows of determination, persistence and accomplishment. I'm going to savor April 17, 2012.  Sweet victories all three.