Sunday, November 18, 2018
It's been 86 days since my son went away to college.
It's been the longest he's ever been away from me and the farthest he's ever been from me physically.
He's across the country at George Mason University.
He's a California kid - see shorts that he's wearing in November - and he lives most of the time in Virginia now.
There aren't any four year college programs here in California.
Our search for colleges that are created especially for people with intellectual disabilities took us all over the country...but sadly, hardly anywhere in the west.
Every single step I wondered if it was right.
I tried to follow Patrick's lead...tried to gauge whether it was he who cared about college or me.
I wanted to be careful about pressuring him into something that wasn't right...plus I have an intense desire for each of my children to live their authentic life, not mine.
But with someone with a disability, there is usually more parent participation and looking for college was no different.
He got accepted.
And then the hard part began...we had to imagine what life without Patrick in our every day sphere would mean.
We had to be okay with him going.
We had to be more than okay...we had to be excited for him...and shove our fears and worries to the side.
86 days ago he moved into a dorm.
He lives with two other people with disabilities and a typical student who is a 4th year mechanical engineering major...from New Jersey.
His name is Stav.
This was Stav and Patrick on Move In Day...and the friendship has only grown.
What's happened for Patrick is a lot of growth...personally and emotionally.
But something else has happened...something that you wish for each of your children and almost never can picture for your adult child with a disability.
Patrick has found a COMMUNITY.
He has something that Dr. Erik Carter from Vanderbilt University identifies so well:
It has developed slowly over these months...but today, 86 days later, it is easy to spot.
When we visited Patrick and were dropping him back off in his dorm, a friend saw him, opened the door to his own room and yelled to another friend,
Dr. Carter speaks about true Belonging as "an ache when someone is missing" and there it was...
people noticed he was gone...people wanted him back.
He had his peeps.
When we call him and Facetime him, he is often surrounded with people:
He is busy and learning alongside of friends.
TOGETHER they have strength and courage
...they can do the hard things...
they can work through the glitches and figure it out.
Just a couple of weeks ago, we called Patrick and there were four people holding up his foot.
He showed us their faces and we asked what was going on.
Patrick had a blister...a little blood...and his crew was working together to figure out how to help.
This is what we all long for...what our hearts yearn for...
we crave connection.
Today, Patrick flies across the country on his own for Thanksgiving...
only we know the truth.
This HUGE milestone would not be possible if it wasn't for the experiences he has had over these
He's not alone.
He has a friend of mine who is willing to take him to the airport, guide him through security and show him the way.
He has a community that believes in him
AND OFFERS SUPPORTS WHEN NECESSARY.
Isn't that what we all need?
Watching Patrick has made me more determined than ever to create a community where I live that offers that same beauty of welcome and belonging.
Support and kindness.
Patrick is living a life that is all his...with support from so many.
That's the kind of world we all want.
The kind we all need.
This Thanksgiving, we will count milestones and blessings and be clear...
none of us do this on our own.
We need each other.
Together, with all our foibles and fumbles, we are better.
Grateful doesn't cover it.
Monday, September 17, 2018
I didn't want to go.
In fact, if I could have reverted to my small child self...I might have had a tantrum and just refused to move.
Another soccer tournament.
I am over it.
I should know better.
I got into the car on a Friday night and began a three hour trek into the mountains.
My 12 year old grabbed the cell phone and made a comment about how I needed a better phone.
She complained about the car we were in.
She didn't like my music.
I didn't like her vibe.
As I sat in traffic, I fumed.
I couldn't take one more millisecond of the ingratitude.
I lost it.
Like a surveyor, I reminded her of the topographical lines of her life...the deepest blessings coming first...
Did you notice that you're healthy?
That I'm healthy?
That we have a car to drive?
That we have gas in the car?
We have the amazing ability to spend a week-end playing soccer?
You have a mom who is willing to devote a week-end to soccer?
That we are together when so many moms and daughters don't get that chance?
As I assailed her with her blessings...
the boomerang effect took place.
Hey, Beth, are you listening to yourself?
Stop your complaining and start noticing.
As we meandered at dusk through the mountains, the reset button was pushed.
We stopped for dinner and we both took a deep breath...
we inhaled the scent of the pines...
it was going to be okay.
We had a soccer game at a high school where giant pines surround the field.
I tripped over a giant root and noticed extra large pine cones...
the sky was a shade of blue that made me consider paint colors:
After some weeks of fires and smoke near me, the color of the sky was a long lost friend.
We had a break and some time until the next game.
Some moms had rented a cabin together so they invited the team to hang out there.
We walked into a welcome where the team cheered when Caroline came in.
She had been injured in the game - a serious bonk to the head - and her team, in that moment, let her know that she mattered.
I could see her body relax...comfortably finding a spot at the big table to paint a few paper flowers.
Parents were tracing flowers, cutting flowers, making paint and paintbrushes available to anyone -
it was an anthill of effort.
The flowers were for our coach, who had lost his mother during the week.
The hand-painted flowers would be a perpetual bouquet for Coach Mike...
a way for 12 year old girls to say:
We see you going through this hard thing...we are so sorry...we are sending love and friendship.
I was so humbled watching these mothers (and fathers) showing their daughters how to love someone through something hard.
I picked up a tracer and a pencil and swallowed hard.
These parents were strangers to me...
but they were mothering my daughter...
right in front of my eyes.
Their love was better than any ice pack.
She was given the gift of thinking of someone else...
the gift of doing good with paper and paint.
Together, we were reminded that it is so often the simplest acts of kindness that last.
After another soccer game, we had the grim consideration of dinner for 40.
How would that work?
What restaurant would serve us?
Instead, another group of moms opened up their cabin...and told us all to bring a little something.
Something turned into quite the banquet.
Moms know how to feed their people.
The girls devoured bowls of pasta, while the adults ate tasty tidbits and watched with wonder more flowers being painted...the designs getting more intricate and beautiful with each effort.
The cabin was at the edge of Lake Tahoe and so the team wandered down to the lake...the girls swam and the sun did its downward dance...gilding the sky...reminding us that this ordinary holiness...this beauty of light...tattoos our world every day for the briefest of moments.
Against the backdrop of waves and feet buried in sand and a chill in the air and a purplish dusk, a group of moms talked about family and the challenges that go with helping our girls grow up...we talked writing and teaching blanketing over the real messages of care and love.
One mom echoed what we all were feeling:
how grateful she was that her daughter was surrounded by these moms (and dads)
...she called it a clan...
an echo from the times when grandmothers and aunties and cousins and others watched over the little ones and made sure it was all as it should be.
In that last little breath of light before the dark, my heart was full.
She was exactly right.
This team has traversed the territory of strangers on the sidelines and moved to a higher plane:
a community that cares.
It was seemingly effortless...but it wasn't.
It took one mom to consider the coach and find a way for 12 year olds to deal with grief.
It took another mom to open her cabin.
It took moms and dads to buy food and take the time to make food and create
a space that welcomed everyone.
It took coaches who had loosened their control on the team for something organic to grow.
It took problem solvers to figure out seating and clean up and all sorts of other glitches.
It took effort.
There, at Lake Tahoe in the middle of a soccer tournament, grace was in abundance.
I didn't have a cabin to offer...
I brought very little food...
I didn't bring art supplies or any ideas.
I pretty much was on the sidelines just watching the miracle unfold.
I guess I'll be the recorder.
When's the next tournament?
Sunday, August 19, 2018
Four years ago, you may remember this post:
In it, I write to the 8th graders in Patrick's class.
They had spent nine years together - from Kindergarten to 8th grade - and truthfully, they were an experiment.
Never before, in our local Catholic school
- or even in our entire diocese -
had a student with Down Syndrome been fully included.
Patrick was included in kindergarten and we had no idea what would happen.
Would it be possible for him to learn?
Would he make friends?
Would he understand what was going on?
Could he make his sacraments?
Go on field trips?
Go on field trips?
Attend 6th grade sleep away science camp?
Could he be a big buddy to younger students?
The short answer: YES.
A resounding, giant, huge, YES!
But, we weren't sure what the other students would do.
Would their learning be negatively impacted?
Would they include Patrick?
Would they accept Patrick?
We shouldn't be so surprised...
children are children.
They accept everyone.
They find a way.
They figure it out.
It's always the adults who think it can't be done.
Well, four years later, those 8th graders have graduated from high school.
Most are off to college.
We decided to host a reunion for those 8th graders and see what it was like four years later.
Short answer: BETTER THAN BEFORE
They came with their parents...or by themselves...or with a friend...but they knocked on the door, shyly walked in and made their way to the backyard table.
The table comfortably sits 8 people.
But, like the famous clown car...or Mary Poppins' bag...the table kept welcoming more and more...they just kept scooting their chairs further and further out...welcoming the next person so naturally it was as if they had seen each other four hours ago, rather than four YEARS ago.
By the time everyone dribbled in, the kids were in a circle of chairs...
the table merely a nice centerpiece.
I thought they might sit in small groups...catching up on what has happened over the past four years...
but they wanted to sit together.
It was organic.
Watching this group, my heart expanded...in fact, it burst.
This.right.here.is what's possible when we welcome everyone to the table.
The table falls away.
It becomes a circle.
As these young adults go out into the world, their heart is inclusive.
They've been given the gift of learning alongside each other and they know what's possible.
It's not a big deal.
It's the way it should be.
Imagine one of these young adults as a teacher.
A doctor giving a prenatal diagnosis of Down Syndrome.
A banker who reads a bank loan document from someone with an intellectual disability.
A small business owner who needs to hire someone.
An apartment owner who will willingly rent his place.
Their life experience will give them the courage to say yes to people on the margins...
and that changes everything.
They understand what's possible.
They know that people with disabilities are capable and valuable and have something important to offer the larger group.
They know that it's possible to be friends.
Watching the Class of 2018, I knew these young people would change the world...
just by being in the world.
They know the secret.
We aren't so different, you and me.
Blessings to you, Class of 2018.
May your journey into adult life be filled with love, adventure, friendship and peace.
May you visit home often.
We're going to miss your sunshine...but the world needs your light.
Shine bright, sweet students, shine bright.
Thursday, June 21, 2018
There's been a lot of sorrow.
I try not to think about it...but every tiny act of mothering is a reminder.
Tonight I clipped my child's fingernails.
I wondered who clips the nails of the children in cages.
Does anyone notice when their nails are too long...or too dirty.
Yesterday, my 12 year old daughter asked me to braid her hair.
It's a rare treat these days so I seized on the moment to brush and tend and love her via her hair.
I wove her hair with a heart that is tattered...I saw the tiny stripes the sun has tinted in her hair already...I knew the area on her head where the braid always gets bumpy...I smoothed and tightened and thought of all the young girls with no one to fix their hair.
Children are being taken and separated from their families.
The government is working to bring the most pain to bear on immigrants.
It's working to harm the youngest and most vulnerable.
I can hardly believe this nightmare is true.
A few days ago, I was moving my daughter up to Portland.
Despondent over these babies and mothers I went for a walk along the Willamette River.
I tried to lose myself in that new place...tried to notice something new with each step...
a wildflower here...a tiny bird there.
It felt good to walk along a river and notice the current that never falters...always moving forward.
Lost in my thoughts I abruptly hit the end of the path...
a dead end with a junk yard attached.
How cosmically perfect.
Gross - Dead - Polluted - Junk
Might as well be describing our government...or my mood.
It felt maddening and sickeningly spot on.
What could I do but turn around?
I literally made an about face to begin walking back and discovered a path called Poetry at the Beach.
I marveled at this mystery.
What was going on?
How could there be poetry at the beach?
Literally, two of my favorite things embedded in some sort of spiritual mash up...what??
I should head back...I had chores to begin...and commitments to attend to...but I knew that wouldn't be happening.
I had to walk the path...
I discovered stones that had the words of children...the poems that children created carved into them...voices of Native American children who pondered the Willamette River and what it
meant to them - felt to them - inspired in them.
Here are their hearts etched into stone:
Monday, June 4, 2018
It was 3:50 am, the streets empty and the school dark when I walked Patrick up.
He was carrying his black backpack - full of a lunch, sunscreen, baseball hat, change of clothes, headphones and freedom.
The guy was headed to Disneyland with his senior class.
Graduating in a few days, his senior classmates got the chance to spend two days down in southern California...time at Disneyland plus time at the beach...throw in a dinner at Spaghetti Factory and it was perfection.
Teacher Scott Bell was there at dawn...along with the school superwoman, Adela, and the director of internships, Susan, and the paraeducator who said YES when asked to support a student who needed it - my son, Patrick - and was willing to attend a field trip that lasted more than 48 hours.
SHOUT OUT to Antwanette!!
There were parents I knew from other parts of my life - also willing to chaperone the adventure.
I walked back to my car in the dark, got into my isolated seat and burst into tears.
How is this possible??
In this moment of independence for Patrick there are so many supporters...
so many willing to find a way...
so many who think nothing of it...
of course, they say.
It's going to be great.
My town, Davis, California, goes like that.
It's a gem of a spot with a creek, double decker buses, a big university and lots of bikes...but like any home...
it isn't the place, it's the people that make it comfy.
I flash back to preschool.
A little co-op preschool that had a tractor in the playground for kids to climb.
We had only been in Davis for a year before Patrick was born and my older daughter, Mary Kate was in the four year old program at Davis Community Church Nursery School - the famous DCCNS.
A co-op means parent participation and when Patrick was born, well, he needed open heart surgery right away at nine weeks old.
I couldn't work at the preschool and felt deep shame about that - so crazy how we hold ourselves to impossible ideals in the middle of a crisis - I couldn't shirk my responsibility!
I wondered if I would have to give up the preschool and find another.
As I was carrying Patrick in his carseat sending Mary Kate off to school, the director of the school, Teacher Betsy, came up to me.
Inwardly I cringed...could she know that I couldn't work...couldn't hold up my end of the bargain?
She smiled and said words that changed my life:
"When you are considering preschools for Patrick, I hope you will consider us."
Almost 19 years later and still that act of full throttle welcome brings me to tears.
In my world, Patrick was living with almost no choices.
He would be stuck attending whatever school would take him.
He would be unable to participate in regular activities.
He would be limited.
He had Down Syndrome.
Her words took a sledge hammer to the limitations I envisioned.
Her words held an idea that I didn't think existed for Patrick:
I would be considering different options for preschool??
He would have choices??
It was a game changer.
It was also quintessentially Davis.
Davis offers plenty of choices...in all arenas.
Food - Fun - Schools - Life
Why couldn't Patrick have choices?
Patrick DID attend DCCNS as well as the special ed preschool that the school district offered.
He had a blended program and that's pretty much been his entire life.
Our local Catholic school said YES.
Our local Boy Scout troop.
Our local swim team.
Our rec department.
Our art center.
Patrick loved singing and dancing and holding the microphone as a little guy.
In third grade we tried a theater class at the art center with the amazing Miss Mindy.
She accepted Patrick, guided the other students and offered opportunities to sing and dance and be part of some of his favorites, including High School Musical and Camp Rock.
Just as he was aging out of Miss Mindy's classes I worried that he was older and possibly more difficult to place...
in that moment came the incredible Dottie.
She wrote her own plays with twists on the classics AND she had an adult son with Down Syndrome.
She understood equity and opportunity and welcomed Patrick into theater during the awkward time of junior high.
As Patrick was moving into high school he was unable to be fully included in high school theater...his one time when he was shut out...and so Acme Theater, a local theater troupe for high schoolers, said YES.
He was included in Camp Shakespeare.
He got a job at our local city pool in the snack bar.
He was fully included in his high school - Da Vinci High School - and able to earn a California high school diploma.
At Da Vinci, Patrick had an internship with Acme Theater.
He made friends, went to dances - where the city provided support (!), created clubs...made his way.
In four days, he graduates from high school.
In this moment of one door closing, another door opens:
Patrick is headed to college.
Patrick has been blessed with a gift beyond measure...a community that believes in him.
He's been taken seriously and given opportunities.
He has been supported without reservation.
He's been enveloped in kindness.
My heart is so full of gratitude and light that I feel like Ironman...with a blinking bright target in the center of my sternum.
How do you thank a town?
How can I possibly express what this town with its big open heart, its sense of let's-figure-it-out, with every person who was willing allowed to transpire for Patrick as he grew up here.
Davis, thank you.
Aquamonsters - Pete and Koren
Sarah and Antwanette and Tammy
The entire faculty at Da Vinci High
Mike at Holmes
Father Dan and Mary Kay Bolz
All of the faculty at St. James School, especially Bev.
And the families at DCCNS and St. James
Robin from First Steps/Early Intervention
Karen Edmiston and Center for Speech Pathology
It is because of your open hearted compassion that Patrick is the person he is.
It's been an incredible ride.
He's off to great places!
All thanks to you.
Friday, April 13, 2018
There's no other way around it.
I've thought about this a lot...having been through many, many, many.
It feels like we could make them easier on the mama's heart.
We could just stop talking about all of the many ways the student isn't measuring up and start considering the one-of-a-kind, unrepeatable gifts they bring to the class.
Why must we test and test and test...
using measurement tools that have not been created for people with intellectual disabilities at all?
I'm pretty sure I would fail a test in Chinese...it wasn't made for me.
Why do we force kids with Down Syndrome to take tests that weren't made for them and then act surprised when the scores reveal that the test wasn't made for them?
Why do we make educating children so hard?
Why do we sit as a panel of experts judging, critiquing, analyzing...
while the parent waits with dread at the guilty verdict:
We pronounce your child disabled.
Why do we see disability as brokenness?
Why can't we see the rare gift of the individual?
Before Patrick, I would have been bothered by that bold white poppy.
I would have disgustedly thought it should fit in.
Its difference would annoy me.
Today I see that poppy and cheer...or, in this case, stop and take a pic.
You, Go, White Poppy!
How did you become white?
Aren't you your bad self, standing there so bold and defiant.
Best of all, I marvel at the environment.
Somehow, some way, the circumstances were configured so that this white poppy could bloom...alongside the orange ones.
How can we help our classrooms be like that?
What does it take?
It sure doesn't take a panel of poppies sitting around a table pointing out the whiteness...
or should we say "severe lack of orange-ness"...the deficit in orange is noticeable.
Spoiler alert: it's never becoming orange.
And, yet, it is beautiful and capable of being a white poppy perfectly and
needs no panel of experts telling it what to do.
I propose this for the next IEP you must attend:
Ask them to tell you about your white poppy.
Ask them to SEE the beauty in your white poppy.
Ask them to understand that the white poppy is never never turning orange and yet it must live among the orange bounty.
What can they do to ensure the vibrancy and flourishing of the white poppy
among so many orange ones?
Let's just start by valuing the white poppy.
Let's stop trying to make the white poppy anything else.
Let's just notice the beauty...and work to fertilize the soil and water it enough and offer sunlight.
Today, we reached the end of a long long journey.
No more IEPs and panels and tests.
I can hardly believe it.
Patrick's journey through kindergarten to high school is almost complete.
Because Patrick is graduating with a high school diploma,
he will have no transition services
from 18 -21.
Somehow, miraculously, my white poppy has been able to grow/thrive/learn/live with all the
Yes, there were people who thought that my white poppy didn't belong...
but there were way, way more gardeners who saw his unusual beauty
and created the climate for him to thrive.
I am so grateful to the teachers who said yes.
So grateful for the willing hearts.
So humbled by the gift of educators who found a way to welcome a white poppy
into an orange world.
Today, my 18 year old son with Down Syndrome signed his own damn IEP.
He shared his hopes and dreams - his strengths and his struggles.
He offered his vision for his future to a bunch of adults.
He acknowledged his heroes and dreamed out loud.
I sincerely doubt if I could have done anything close to that when I was 18.
It was a crystal clear moment of courage and clarity.
I was sidelined and in the cheering section...
as it should be.
I can only echo the words that are at the top:
Believe in your child so much the world thinks you're crazy.
Then believe more.
The problem isn't that we dream too big...
I know that much.
Today, I am grateful for the grace of endings, the blessing of beginnings and the power of prayer.
Lord, hold him close.
Monday, February 19, 2018
I am sitting in the MIX...the George Mason University study space...after just dropping Patrick off to his George Mason LIFE program interview.
On that summer day in July 1999 when Patrick was born,
George Mason LIFE was also in its infancy...almost no other post secondary programs existed in the United States for students like Patrick.
George Mason LIFE was also in its infancy...almost no other post secondary programs existed in the United States for students like Patrick.
Nobody on the west coast knew of George Mason...or of this possibility...or of what could be.
We heard the word “Sorry” a lot.
“I’m so sorry” they would say as they looked at my sleepy brand new baby.
The incongruence of that never made sense.
Pro-Tip #1: if you see a tiny baby say only one thing: CONGRATULATIONS!
Yes, even if the baby has a heart defect and needs open heart surgery right away.
Yes, even if the baby has Down Syndrome.
Yes, even if the future is unknown.
Say CONGRATULATIONS...because what it has taken for this little sprite to land in our midst is worthy of congratulations.
It’s a miracle.
And the miracle is no less miraculous if the sprite lasts one day among us or lives for 75 years.
Miracles are miracles and they should be noted.
Patrick left his icy cold water (one of his favorite things on the planet) in my bag...
I text him...asking if he would like me to drop it off.
I text him...asking if he would like me to drop it off.
The guy is busy with a college interview.
What am I thinking?
I take a swig, just to be close to him.
This moment is so bittersweet...six weeks after Patrick was born I went to my OB/GYN follow up appointment. I took my little baby in a bucket with me...my sweet tiny baby boy who would need open heart surgery in just three more weeks.
The OB/GYN did not know how to speak of Down Syndrome or heart defects or any other “abnormalities”...the privilege of working in a first world hospital made difficult conversations rare, I guess...or maybe there is no training for this...but what she told me in those aching awkward minutes has stayed with me.
She was trying, really she was.
I know this.
And still, it was a stabbing wound, no matter how unintentional.
She said, “Well, I know we all fear our kids growing up and going away and well, that won’t be something you have to fear with your baby. He will always be with you...and I think that’s great.”
Future doctors of the world, take note: this is not something you tell a sleep deprived, anxious, mom of a newborn facing open heart surgery and two other little ones at home.
THINK THIS TO YOURSELF.
You don’t have to try so hard...
Refer back to Pro-Tip #1...say Congratulations...and win the Oscar, mean it.
Even mumbling something about how cute the baby is would work.
As soon as my OB/GYN said this I wondered if that was true...and that’s the beauty of humanity.
We don’t have to believe the stuff they tell us.
We can notice the gates as they are being put up...we can plan to knock them down...or find the entrance.
I have wondered about that prediction for 18 years...but around year 6 I knew it was wrong.
Patrick has no interest in hanging out with me.
After three years of leukemia treatment as a toddler, it was time for Patrick to start kindergarten.
He hadn’t felt good for three of his six years.
Half his life.
I could have home-schooled him...or figured out a modified kinder program for him...but he was determined to go to school with his big brother and sister.
I still consider that one of my greatest acts of kindness as a mom.
I wanted to play with my guy.
I wanted the fun...the laughter...the joy of a healthy Patrick.
I wanted it for me...just me.
He wanted it for the world.
And so I had to follow his lead and find a way to make that happen.
He never looked back.
He never cried to come home...or told me he missed me.
But, trust me, I squeezed him tight every afternoon.
Kindergarten was the preamble to what is happening now...and I feel the same way.
He is following that big brother and sister again...and he knows he’s ready.
Me, not so much...but it can’t be about me, can it.
Getting ready this morning for his George Mason interview, lying in a hotel bed across from me,
he smiled his sleepy smile...one that only a mother knows.
he smiled his sleepy smile...one that only a mother knows.
I got up and walked over to his bed and I gave him a good morning hug and I looked at his sleepy eyes up close.
“Patrick, I haven’t told you how proud I am of you. You did such a great job at your Clemson interview and I am so proud of you.”
“Why?” He asks...and I weigh the two opposing ideas: he really doesn’t know or he just wants to hear great things about himself...the reason doesn’t matter and I smile...
“Because your job as a person is to shine your light...you are the only one with your light...and you shined it so bright Patrick that not only could I see it but the Clemson people could too.”
He knew I was right.
Some people ask what the whole point of living is and I think it is just to shine.
There is so much darkness.
So much woundedness.
Too much suffering.
The only way forward is to shine...shine so bright that they need sunglasses to stare.
So, friends, let us work to find more ways for our kids to shine...more ways for ourselves to shine...Patrick is going to find his way, really, it’s pretty obvious now...we all must find our way.
|Moments before the Clemson Interview...anxiety free...ready to shine.|
Step 1: Just Shine.