I Got Another One

Yesterday, I ignored my outrageous pile of clothes that needed folding.  

I plucked through them and pulled out Patrick and Caroline's clothes for the next day.  

I gathered them and looked at them and held them close.

I breathed them in and closed my eyes.

I have one more day of doing this...

this...

the mundane...

the boring...

the rituals of living...

I got another day...

she did not.

A lady in my town that I only knew as a "friend of a friend" passed away.

She leaves behind so many, including her son, age 14, and her daughter, age 11.

No more packing lunches.

Figuring out carpools.

No more chances to argue about clothes...

or bedtime...

or homework...

or showering.

No more music that reminds her of something special.

No more silly jokes.

No more snuggles...

or books that keep you reading until way too late...

or chances to try again.

Honestly, sometimes this world is too hard.

Why did she have so few days?

Why do I have more?

No clue.

I wish I could make sense of things that seem utterly wrong...

and rotten.

But I'm no sage.

I just get another...

and I'm not taking it for granted.

I'm going to squeeze this day like it's a soggy pool towel...

kiss my babies about a hundred more times than necessary.

Text those two that think they're big.

Hug that hubby.

Snuggle the pooch.

Dance.

Sing.

Write letters.

Check crap off that enormous list of stuff to do...and smile while doing it.

I get another day!

I'm going to eat good food.

Buy a brand new baby girl something special.

Plan a trip.

Daydream.

Make time for yoga.

Kiss long and hard that sweet guy who spends his days with me.

I'm gonna thank my mail lady.

I'm gonna buy someone a coffee.

I'm gonna give someone the benefit of the doubt.

And pay that parking ticket.

No more nagging.

No more procrastinating.

No more delaying.

I got another.

How to cherish it?

How to hold it dear?

How to make it count?

Fill up that grateful spot and let it flow...

let the universe know how much you love this time...

precious time...

always ticking away...on the good days and the bad days...

Today, you have another...

one more chance...

one breath at a time...

one smile at a time...

let's enjoy it.

It's not coming back...
but it's ours right now.
Grab it.

"I still find each day too short for 
all the thoughts I want to think, 
all the walks I want to take, 
all the books I want to read, 
and all the friends I want to see."  
-- John Burroughs

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.

The Tough Gene

"Choose rather to be strong of soul than strong of body." 

-- Pythagorus

Would that we could choose it.  Wouldn't it be great if we could go around and say, "I choose to be strong of soul." "Today, I choose to be strong of body."  But it doesn't seem to go that way. It seems that the very people who are not very strong in body seem to have a strength of soul that inspires and educates.

Personally, that strength of soul is seen on the 21st chromosome...no doubt.  Those kids with a little bit extra are tough...not just kind of tough...inner tiger tough.  

I've spent the last few days with Patrick who has been sick.  The first night it was an all night 

barf-o-rama.  Almost 12 straight hours of vomiting.  He weathered it like a sailor.  He could have gone eight more rounds.  I was on my last leg.

Next came fever and a sore throat.  I was along for the ride...just as sick.  I could barely drink.  Patrick called it "a frog in my throat".  Dealing with strep throat, good-naturedly, he drank tea and smoothies and tried yogurt or soup. I longingly dreamt of popcorn, salad and crunchy chips.  He accepted the circumstance with grace, as usual.  I'm so glad he's in my life.  

Still learning the lessons of how to live and how to be strong of soul from a boy.  

Patrick is one tough guy.  It is astounding.  And, I swear it is the same for other kids I know with that extra 21st chromosome.  My friend's baby girl dealing with cancer and every kind of crappy chemo they can throw at her and still she keeps dancing. How about Renee, born with both Cystic Fibrosis and Down Syndrome?  What are the odds?  What are the chances?  How do you think she lived her life?? Swimming and playing and loving the people around her with a strength that humbled every doctor and nurse and person whose path she crossed.  How about the orphans with Down Syndrome waiting to be loved for literally years...holding on...and then blooming under the sunshine of a family.

Perhaps it is because people with Down Syndrome have centuries of history of having to tough it out on their own: isolated, abandoned, discarded.  Perhaps at the cellular level they have a strength that took eons to develop.  Maybe it was borne out of adversity and now it hangs on as a demonstration of the singular goal of every human: strength of soul.  I don't know. 

What I do know is that people with Down Syndrome have an inner strength that sees them through a lot of crap.  They have an inner reserve that somehow manages to hold them through adversity and difficulty that would make most of us cower.  They use the moment to pour out grace and kindness.  Like some sort of mystical Buddha, they get zen. They smile and dance when no one on the planet believes they possibly could. 

I know who I'm betting on when the going gets tough.

"Only the weak are cruel. Gentleness can only be expected of the strong." 

-- Leo Buscaglia

The Struggle

"I remember one morning when I discovered a cocoon in the bark of a tree just as a butterfly was making a hole in its case and preparing to come out.  I waited awhile, but it was too long appearing and I was impatient.  I bent over it and breathed on it to warm it. I warmed it as quickly as I could and the miracle began to happen before my eyes, faster than life. The case opened; the butterfly started slowly crawling out, and I shall never forget my horror when I saw how its wings were folded back and crumpled; the wretched butterfly tried with its whole trembling body to unfold them. Bending over it, I tried to help it with my breath, in vain. 

It needed to be hatched out patiently and the unfolding of the wings should be a gradual process in the sun. Now it was too late. My breath had forced the butterfly to appear all crumpled, before its time. It struggled desperately and, a few seconds later, died in the palm of my hand.

That little body is, I do believe, the greatest weight I have on my conscience. For I realize today that it is a mortal sin to violate the great laws of nature. We should not hurry, we should not be impatient, but we should confidently obey the external rhythm.

I sat on a rock to absorb this New Year's thought.  Ah, if only that little butterfly could always flutter before me to show me the way." -- Zorba the Greek by Nikos Kazantzakis

Today I sat in a coffee shop watching a nine month old attempt to stand.  In his footed pajamas his legs wobbled.  He bit the dust almost every time.  His patient grandfather repeatedly held him up underneath his arms and then reluctantly let go.  The little guy leaned sideways over the table, precariously.  He smiled and every onlooker knew what was coming next...another fall. This time it looked especially painful and we all grimaced but that little toddler sat for only a moment before he attempted the impossible again.  We all knew he was on his way.  He'd be walking in a matter of days or weeks.

For the past two weeks I've been watching my student teachers bust out of their cocoons, dry their wings and attempt to fly solo in their classroom.  Some days the attempt seems easy and things unfold smoothly but most of the time it's a struggle.  How do I get control of a classroom of kids?  When will they listen?  What happens when they don't understand?  Why must Joe constantly be out of his seat? Two kids are fighting on the playground, now what?  What these teachers are attempting is just as hard as the toddler.  There are a whole lot of falls, bruises and doubts that creep in.  There's shame, embarrassment and fatigue.  I marvel at the difference between the one year old and my adults.  Why does the one year old never give up?  Why does the adult immediately doubt himself and consider quitting?

The answer lies in our willingness to struggle.

Once you're an adult, you get pretty good at avoiding the struggle.  We avoid algebra, foreign languages, running the mile in PE and any other thing that doesn't make us feel confident and comfy. We "know our limits" and are satisfied with them.  We no longer have to attempt the impossible...unless we become parents, get married, start a business, write a book or go after a dream.  In short, we get used to feeling comfortable.  We forget that many, many times the learning and the growth is in the struggle. Somehow since becoming an adult we have forgotten that life is a struggle...a struggle for understanding, for meaning, for connection, for acceptance, and yes, for competence in new undertakings.  

The good stuff is in the struggle.  There you will find all that you have been looking for: meaning, acceptance, competence, balance, understanding.  Waiting for the sun to dry our wings, struggling out of the cocoon comes beauty and strength.  We can't rush the process or wish it were different.  Well, we can...but look what happens when we do...we lose the opportunity and the lesson.

Yesterday one of my student teachers looked at me and said something so wise that we both just let it soak in: "Beth, I used some of your ideas today and it was better than yesterday. I could see it being a little better -- just a little.  I guess it's going to be like that...just a a little better each day."  After the pause, I reminded her that there would be days when it wasn't going to be any better and in fact may be worse but that most of the time it does go like that...incrementally better bit by bit.  That's what the struggle is about.

Recently, I've been wrestling with a court decision that just happened in Oregon.  You can read about it here: Wrongful Birth Court Case  In it, the Oregon state court had a jury agree with parents who had a prenatal test called CVS that showed their child did not have Down Syndrome (when in fact she did), and held that both the hospital and the testing lab were at fault.  The parents (unbelievably) testified in court  (for all three of their children to hear, not to mention the world) that had they known their daughter would have Down Syndrome they would have aborted her. Their daughter is almost five now.  Five years of knowing her and still they say this.  How she could be allowed to stay within this family and not part of Child Protective Services I have no idea.  The parents wanted money to compensate them for the "burden" they must now deal with and they were awarded $2.9 million.

So...let's get this straight: according to the court system in Oregon, children with Down Syndrome are a burden; children with Down Syndrome are understandably optional and barely deserve life.  In fact, if you manage to "sneak" through the prenatal search and destroy mission in place within the health care system and survive, your parents can complain bitterly and be financially rewarded in court.  The sad statistics right now for prenatal diagnosis of babies with Down Syndrome are startling: 90% of them are aborted.

Why?

It all comes back to struggle.  The outside world perceives that people with Down Syndrome struggle throughout their lives.  This might be an understandable notion since people with Down Syndrome take longer to learn basic skills like walking and talking, reading and writing, swimming and riding a bike.  They are more likely to get leukemia, have a heart defect, have gastro-intestinal difficulties and live a shorter life span.  There's no denying that those things are not something we would hope for any child so why would we allow a child with these difficulties to be born?  Why would we tolerate the struggle when we can so easily put them out of their misery and erase the whole difficult situation.

Here's the secret: people with Down Syndrome may have to take longer than the average person to achieve basic skills but they don't suffer or struggle through it.  Like anybody, they are proud of their achievements, excited about learning new things and eager to try.  They learn things at a slower rate...what is the struggle in that?  Who is that a struggle for?  The parents?  The onlooker? The classroom teacher?  It doesn't matter to the child...they are busy learning, not looking around making comparisons.

If you asked Patrick on this day if he was happy, he would tell you emphatically: "Yes!"  His older brother is home from college, he got to see his cousins and grandparents yesterday, and he is playing with his little sister this minute. Everyday life for Patrick is pretty glorious.  He is fully included in his class of 6th graders and has had the opportunity and the good fortune to make good friends.  He has a school and teachers who believe in his ability to learn and challenge him. He lives in a town that accepts him and has allowed him any opportunity he has asked to try.  His struggles are frankly few.  If only I could tell that to a court in Oregon.

                   By far, Patrick's biggest struggle is in the way the world perceives him.  

Expectations are immediately lowered for him.  When he is older typical women with 46 chromosomes will never consider having a romantic relationship with Patrick.  It's a rarity for someone to consider him a true peer and ask for his advice or expertise, although it should be noted he has quite a lot to offer. Restrictive biases and prejudices are something he has to deal with simply because he has an extra chromosome. The world pities him and considers him a burden.  And now, thanks to the Oregon court system that misconception is reinforced. There lies the struggle.

Someone forgot to give the memo to those parents in Oregon: life is a struggle.  There is no avoiding it, even if you have 2.9 million dollars. And, here's where the irony of life comes laughing in -- the one person that I know who suffers or struggles the least is Patrick.  "Pain is inevitable, suffering is optional."  Patrick intuitively knows this and lives his life that way, every day.  He celebrates the little things --which it turns out are the big things.  He loves without limits or conditions.

If only those parents in Oregon could learn from him.

On this day, I'm going to try to remember the lesson: It is a mortal sin to violate the great laws of nature. We should not hurry, we should not be impatient, but we should confidently obey the external rhythm.


I'm going to let my butterfly struggle, watch his wings unfold at the perfect moment and cherish the flight.  He deserves that chance.  We all do.