Wednesday, March 28, 2012

One Small Light

"Thousands of candles can be lit from a single candle, and the life of the candle will not be shortened.  Happiness never decreases by being shared." -- Buddha

Tonight was a dark and stormy night.  I didn't want to go.  I wanted to put on my jammies, snuggle up with Patrick and Caroline and call it a day.  But, instead I got into my cold car, alone, drove through the pelting rain and walked into a chapel.  Mary Kate was on the first night of a four day retreat and her high school asked that the parents attend an evening prayer service on their behalf.  Other rain-soaked parents drifted in.  Some were alone, like me.  Some were together as a couple.  It was obviously uncomfortable for some and painful for others -- another reminder of past sorrows. The evening began like all good Catholic ceremonies: with a prayer and a song. The irony of the opening song was not lost on me: Come Down To The Water...really, the water had come to us...I wasn't feeling the need to come down to it...but I sang it in my head and looked down for fear of rolling my eyes to anyone nearby.

Kairos is a Greek word.  It means "time".  But not the measured time that we are used to.  It mean's God's time...the unencumbered luxury of time without measure or limit.  This retreat was to allow busy high school girls a chance to breathe and take note of "God's time".  I can't say much more than that...there's a mystery surrounding Kairos.  A surprise element that holds the imaginations of those that haven't gone yet. That needs to stay sacred and whole.

What I can tell you is that in the dark, on a rainy night, next to parents that I didn't know in an unfamiliar chapel I lit the very first candle and thought of my daughter.  We were asked to think of small graces that we could hope for our daughters.  We were asked to hold those close as we lit the flame.  I thought of friendship and peace, a chance to feel God's holy presence, an opportunity to break down walls and open up hearts.  I watched that tiny flame and felt its glow.  I watched 58 other candles get lit one at a time.  Some parents came up together, some alone.  Some of us were tired, wet and bedraggled.  Others looked professional and business casual.  Some had tattoos.  Others had younger children in tow.  We were parents with a daughter the same age, in the same location, at the same time but that was it.  Yet we all felt the need to take the time and make our way in the rain through the dark of night to light a candle and sing a song.

I thought of the many, many times we have been up in the night with our daughters: as newborns needing a night-time feeding and change, with a feverish toddler, with croup, with the stomach flu or nightmares.  If only we could have seen the other candles and known who was alongside us in the journey.  Later on, we've been up with the same girls with worries over friendships, boys, tests, the uncertainties of life, social media, midnight texts, or waiting up for the drive home from some adventure 
-- a dance, a party, a football game.

Where was our candle light to guide us?  Where was our kinship?  

Parenting is hard stuff.  We blow it all the time and still we have to get back at it.  Pick up the pieces, mend the broken hearts and find the strength to light the candle.  
Just one tiny light on a rainy night.

That warm, cozy glow at first lulled me into wanting to take a short nap...but then it refueled me.  I looked up and smiled at strangers.  I bathed in the gift of getting a chance to stop and pause and consider my daughter: this amazing, incredible teen-age girl on the cusp of being a woman.  How had so much time passed?  How had she grown so much? 
Tonight, I relished in the beauty of unmeasured time and a line of candles glowing brighter because of each other.  

For the rest of this week, we are supposed to light the candle.  
I think I just found a new favorite hobby. :)

Wednesday, March 21, 2012

A Little Something Extra

“The difference between ordinary and extra-ordinary is so often just simply that little word - extra."
                                                               -- Bear Grylls

Today is March 21st.  That makes it World Down Syndrome Day -- hooray!  Yes, believe it or not, people from Arizona to Zimbabwe, from Nepal to Nicaragua, from India to Iceland are celebrating a little bit extra, the 47th chromosome on someone they love.  Here is my little bit extra:

Patrick at the top of a hill he climbed at camp.

Almost thirteen years ago a little bit extra graced my life.  I call him my violet living in a daisy world. This is not my analogy it is this mom's:  Violets and Daisies  (However, ever since Patrick has been tiny I have been using this to explain how we view Patrick.  And actually, our kids now spot "violets" all over and cheerfully yell out: "I see a violet!")  

Let's think of it this way, daisies (AKA you and me) grow easily.  We are beautiful.  We don't need all that much care.  If you are over-watered, get too much sunshine or have to be transplanted it all seems to happen without too much trouble.  People like Patrick are violets -- they need a bit more care.  Too much sunshine can definitely be a problem.  Over-watering can cause their flowers to fall off.  Transplantation can be deadly. With all this extra care comes something special: violets are rare and with their velvety beauty remind us of the fragile gift of life.  Besides, violets are known for their wicked sense of humor. :)

Violets are most definitely NOT disabled daisies!

However, our violet is surrounded by daisies and must learn to be a part of the daisy world.  He does so with excitement and purpose.  He likes daisies!  And it turns out, the daisies like him. It can be tough to be different...tough to be unusual...tough to be the first child with Down Syndrome in your school, sports team or theater production.  However, when acceptance and welcome are part of that newness it can also be amazing.  

I like to say that Patrick cracked my heart open.  Although my heart was wide open from loving two other children, Patrick opened my eyes and showed me the loveliness of violets.  Until his presence, I'm sad to say that I was blind to anybody else in my garden and only saw the beauty in daisies.  The uncommon was uncomfortable.  The violets of the world needed to get out of my way -- they easily could be trampled. I was in a hurry.  

Patrick slowed me down.  Watching Patrick bloom has been like watching a flower unfold in slow motion.  It's been truly breath-taking.  Learning to live with an unhurried sense of linger and cherish has been one of Patrick's greatest gifts to me.  I'm no longer trying to trample anything.  I notice the details and the beauty in uncommon velvety goodness.

I remember walking through Disneyland when Patrick was two and having a boy in a wheelchair reach his arm out to me.  The old me would have brushed him aside and hurried on.  I would barely have noticed.  However, with new eyes and a new heart so fresh from mothering Patrick I a middle of a crowd, in the middle of pushing and hurrying Disney-goers.  I stopped my stroller, held that boys hand and looked him in the eye.  In that moment, I could see his violet beauty, soak it in and make a connection.  I still remember his smile and his mother's apology.  I wanted to shout and tell her how blessed I was by her son's interaction with me but I simply smiled.  That moment was just between me and a small boy.  I grabbed it...Disneyland got a bit brighter for me that day.

Once you notice violets, your heart begins to notice all sorts of other forgotten bits of beauty.  Homeless people, people who talk to themselves, the elderly, the outsiders who live on the fringe all hold a beauty for me that I know can be revealed.  I am a lot less scared of differences and a lot more tolerant and forgiving.  Loving Patrick has allowed me to love the disabled parts of myself and to recognize the emotional disabilities in many others.  We are all slow to learn in so many ways.  We all have something of value and something to contribute.  We all matter.

Our world values speed and intellect.  I'm here to tell you that when you rush around being smart you might miss the lesson.  There's a whole lot of wisdom in slowing down and noticing the beauty of violets.  I am forever grateful that my garden has a violet.  Cheers to you Patrick, my little bit extra!

Sunday, March 11, 2012

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.


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.

Thursday, March 1, 2012

A Letter to My 16 Year Old Daughter

**Note: I went on retreat last week with Mary Kate and we were asked to write a letter to each other.  Of course, I wrote and wrote but my paper and my time were for a week, I've continued the letter in my head.  It needed to become this.  Thanks for your patience and understanding.**

 "A daughter is a day brightener and a heart warmer." -- Author Unknown

Mary Kate's famous Strawberry Country Cake!

To my sweet, sweet daughter, Mary Kate,

I love you.  Please know that down to your core. Always know I love you, think about you, hope for you and wish for you joy, love and contentment in your life.  

There is nothing that can happen that will diminish my love and joy in you. You do not need to earn it, prove your worthiness or show how great you are, or how accomplished or successful.  I love you simply because you are you.

I loved you the moment I met you (at your least accomplished, most vulnerable, most needy moment) and my love has only grown stronger so please trust me when I say this: you are loved exactly as you are in this moment.

I credit you for teaching me one of life's most important lessons...when I was only a mother to Jack, I wondered if it was possible to love any other child with the depth and intensity and ferociousness that I felt for him.  I couldn't imagine it. But when you were born my world got a little bit brighter, my heart cracked open a bit more and my point-of-view shifted dramatically.

How childish of me to think of love as a pie -- with only a few slices in it that could possibly be all used up.  How juvenile to think of love as finite and limited! It took your presence in my life to show me the wisdom that love is limitless, infinite and well beyond our narrow understanding.  

Love is no pie.

Rather, it is a bubbling spring with a never-ending source.  It is the closest we get to God.  It has no end and our ability to love deeply, ferociously, intensely has no constraints or boundaries...we can do it over and over and over again.  It is miraculous.

I am so grateful for you, Mary Kate.  You are amazing and one-of-a-kind.  You are hilarious, passionate, filled with a strong sense of right and wrong and very caring.  

You are also way too hard on yourself.

I want you to carefully listen to what your mind tells you.  If it tells you that you don't measure up, that you aren't good enough or that you are blowing it --  it is lying to you.  Listen a little deeper...blow away the harsh words and listen for the acceptance and love that is in there.  Offer it to everyone but offer it to yourself first. Remind yourself that you can do anything.  You are strong and powerful and incredible.  Know it...really know it.

My hope for you is that you will trust the world and live with your arms wide open.  I hope you let yourself open up to others, put yourself out of your comfort zone and let yourself feel deeply.  Even if you get hurt or rejected, it is worth it...every friendship and relationship helps you to become the person you are supposed to be.  And even though it might hurt, that is what life is all about.

Beautiful Mary Kate...cherish your body.  Look at it and know beauty, health and strength.  When you look in the mirror, be grateful for your vision...notice the sun-kissed freckles of so many happy outdoor memories. When you hear someone call your name, feel the strength of the multitude of amazing women named Mary that are part of your family; hold within you the grace of Mary, the mother of all saints, and smile at that little bit extra we added to it: Katherine.  Your name holds faith and family and fun all within it. It's the first gift we gave to you.  We cloaked you in those three important threads of life hoping they would take root in your heart and be a guide.

Being a woman is a gift.  You are blessed by your feminine side...a sensitivity to the outsider, to the isolated, to the lonely.  You are a nurturer. You have a softness and a tenderness but it is shielded by an outward strength.  Be aware and generous in letting others know that soft and tender core.

One of your greatest attributes is your ability to "go for it".  You put on the tap shoes, pick up the lacrosse stick, belt out a song at an audition, bake an apple crustata and seize the day. I cannot tell you how much that humbles me...over and over again.  You do not hold back when you think there is an opportunity or something that intrigues you.  Transfer that uuumph to people too.  There are so many fantastic people that will cross your path and influence you if only you let them.  Give them a chance.

Give second chances.  Forgive people's mistakes or oversights.  Forgive your own.  We all blow it...almost every day.  That's my favorite part about going to sleep -- the gift of a new day.  We get to start over.  Every, single day.  Cherish the fresh start, the blank page and the new chapter.

Enjoy today.  Don't live for the future and don't steep in past mistakes.  All you have is today.  All that matters is now.  Whoever crosses your path today is who matters.  Stop and notice. Don't bank on seeing the person tomorrow. We never know. That is both the blessing and the curse of life. Enjoy today.

And now here is my final pearl on your very long necklace of advice I have beaded for you: attitude is everything.  You cannot change the circumstance.  You cannot change the hardship and trust me, you will have hardship.  Adversity will knock on your door and you will have no choice -- you must answer it.  How you greet that moment will define the path you take.  One of my favorite quotes is this: "Pain is inevitable.  Suffering is optional." Will you suffer?  Will you sink?  Will you succumb to the heartbreak?  You don't have to.  The choice is entirely up to you.  You decide the direction.  Do you choose hope?  Love?  Kindness?  All of those opportunities are present in any moment of difficulty. Notice the blessings.  Create your reality -- attitude is everything.

I know, I've had enough.  But, I never have!  I could talk to you forever...and who knows, maybe with my blog I will. :)  I love you...