High enough to see beyond horizons….

20140606-174432-63872514.jpgToday I went to the bank to get my passport out of the safe deposit box.  I figured it was probably time to renew it, even though we don’t have any specific international travel plans right at the moment.  As I rifled through the box looking for it, I came across the baby journals that I wrote for Alex and Hannah.  These are books I started long before they were born, when I first learned I was pregnant.  I continued to write in them until each kiddo was in preschool.  Alex’s journal is full; Hannah’s stops halfway through, but she is the second child and admittedly, I did kind of have my hands full by the time Hannah became a toddler.

Tucked into the front of Alex’s journal, I found a small note.  It’s a copy of a letter I sent to my best friend in San Francisco and although it isn’t dated, I believe I sent it in the summer of 2006.  My friend at that time was preparing for his yearly trek to Burning Man, “an annual art event and temporary community based on radical self expression and self-reliance in the Black Rock Desert of Nevada.”  As part of the Burning Man community experience, each year they designed and constructed a beautiful non-denominational Temple where people could write and attach notes to loved ones, prayers, wishes, thoughts, hopes and dreams.  At the end of the week-long event, the Temple was burnt down, after which everyone would pack up and head home.  I had been wrestling with my guilt over Alex’s autism, trying to connect with my higher power and stay strong as Alex’s mother.  I wanted to send my tangle of emotions and resolve out into the universe, somehow point it all directly towards the heavens, and let it go.

My friend did me a great honor that year by carrying the note to the Temple on my behalf.  He taped it high on one of the walls and took pictures so I could see exactly where it was attached.  Then he videotaped the burn.  I watched and cried as my words rose in ashes straight up to the sky.  I made my promises to my son, and let go of what I couldn’t control.  And I felt something heal inside me.

Through all the challenges we have faced recently, and despite all the pleading prayers and focused intentions on which I’ve steadied myself, I had forgotten something important.  It is not my place to determine Alex’s life.  He is a child of the universe, and as such he is always cherished and protected and lifted up.  My job is simply to do the best I can to take care of him while he is here on earth, and to respect the life he was born into for reasons more important than right now, and a greater purpose which I in my basic human-ness may never fully understand.

Reading the prayer of my younger-mother self today was a timely reminder of all of this.  I am grateful to be able to share it with you:

 

20140606-174431-63871606.jpgDear Alex,

I love you and I am proud of you always.  I feel I was born to be your mother. 

You are bright and capable and you will make great contributions to the world.

I bring this prayer here because I want to let go of my guilt.  I know I did not cause your autism.  But when I see you struggle with your words and scream in frustration, I wish more than anything I could make it better, make it easy for you, take away your challenges.  Yet I know the easy path is not the one you’ve chosen, you chose this life for its lessons.

I pray for strength.  I pray for compassion.  I pray for hope. 

I know that we are stronger together and that God has blessed us with each other.  I promise I will never give up on you.  As these prayers go up to heaven, may we both be lifted high enough to see beyond horizons.

Love, Mommy

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Love After The Storm.

Dear Electricity,
While you were away I had a lot of time to think. And now that you’re back, well… the thing is… I love you.

It might sound hokey and you’re probably thinking, “You say that to all the forces of nature after an ice storm.” But baby, I’m serious.

I know I haven’t appreciated you for all the little things you do, like running my dishwasher and lighting my front porch– and the night lights! man how I love those little things….

But I promise to pay more attention to you, and to be more grateful and not overwork you or curse at you if you run up my credit cards at PECO buying new currents or transistors or whatever you girls are into these days…

Hey wait, come back, that was a bad joke, sweetie, don’t be mad.

Anyhow, I know we’ve been on and off for a while. But I’m ready to take our relationship to a whole new level…I want you to stay. Permanently. Please tell me you’ll stay.

Love,
Cathy

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Never Assume Anything

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Today I am grateful for:

  • A slow ride down the expressway to work.  I was traveling behind a green sedan driven by a heavily tattooed, grandfatherly man in a hometown baseball cap.  On his bumper were several stickers including “Marine for Life” and “Purple Heart.”  And in the back window?  The cutest collection of stuffed animals ever assembled—including several critters from Hannah’s personal zoo on her top bunk bed.  It reminded me that no matter how much we may think we know about the world or about anyone else, we should never assume anything.
  • Aubrey, my beloved.  As I type this, she is at Children’s Hospital with Alex who is undergoing a fairly routine GI procedure.  She’s texting me the “play by play” and reassuring me that Alex is doing just fine with all that’s going on.  No matter how much time goes by, I remain forever grateful that she has come into my life, that she has glided so expertly into the role of second mom to my kids, and for the mutual love relationship that has developed between the three of them.  I could never have wished for anything more.
  • My mother, who in dying gave me the gift of knowing permanence.  She is still with me every day.  And she still gives me the opportunity to know her better.  As my life moves on, I think about her in new ways, I feel her presence and I see the signs she sends me.  I miss her as a living being I can hug, but – at least in my times of calmness and clarity—I understand without a doubt that she lives on and that one day I will meet her again.  Two years ago I had no idea I would come to this place.  And I’m sure the journey will continue.

I am grateful for…

the chance to live without assumptions…

the freedom to experience my life…

and the opportunity to learn from it over & over again.

Guest posting on being an openly gay autism mom….

To celebrate my birthday today, I’m guest posting at Lesbian Family

So please hop on over there to read the …

Top Ten Reasons I Love Being an Openly Gay Autism Parent.” 

I’m so proud of this piece and completely honored to be able to openly share my life with you, my wonderful community of readers!  My family is blessed beyond belief because we have a worldwide village of relatives, friends, helpers, teachers, angels, encouragers and problem-solvers.  We are all very grateful for that.

So what are you waiting for?  Go read my post— go now!

xoxo

Cathy K.

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When I was asked to contribute a piece on what it’s like to parent a child on the autism spectrum as an out lesbian, I was so honored I actually giggled.  To be able to be in a place in my life where I can be open and out and tell the truth about my family, and to share all that with such a supportive community…. well, that just makes me wanna sing!

… Which I won’t do here, but if you were standing in my kitchen, you’d get an earful of show tunes from the woman my future sister-in-law calls “the happiest gay person ever!” …

For me, parenting a child on the autism spectrum feels not so different from my coming out experiences.  The lessons I learned on each side seemed to be all about truth-telling and living life authentically. …

Read more of this post

Daily Prompt: Immortalized in Stone

On December 14, the day of the Sandy Hook Elementary tragedy, the WordPress Daily Prompt was “Dear Mom.”  Today, on what would have been my mother’s 69th birthday, the prompt is “Immortalized in Stone.”  The picture in my head is her gravestone, although the WordPress prompt was not about death, but about commemorating a life and carving out a symbol of significance.

And so here I begin….

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Dear Mom,

Throughout this last year and nine months since your death, I have felt your presence in big and small ways nearly every day.  The fact that you gave birth to me 40-some years ago is not lost on me.  I continue to be Susan’s “Little Chip” as you loved to call me– a “chip off the old block” minus the “old block” part.  We have matching hands and I have always been grateful for that because every time I look at mine, I can see yours.  It is like a window into your life, a connection to a perspective I couldn’t otherwise have.  When I look at my hands at the age I am now, I can flashback to the two of us together when you were my age.  I remember who you were to me, and I can see myself through your eyes.  I know what my hands will look like 20 years from now, and how my daughter will hold them and watch them.

Hands are for doing, for holding, for shaping and sculpting.  You were my sculptor in so many ways.  You helped form the woman I am now and everything I know about being my true authentic self began to grow from ideas you instilled in me as a little girl.  My spirituality, my parenting, my creativity, my persistence.  The way I create a home, the way I work, the things that make me giggle with pride.  I am humbled to see your hands– your busy, graceful, purposeful life– through my own and to know that I am helping to guide my daughter’s life as you did mine.

What have I wanted to say to you but haven’t been able to?

Nothing.

There is nothing I left unsaid at your death.  There is no joy or sorrow or secret you did not know about me while you were alive.  I only wish that you could see my hands now, wearing a ring that Aubrey and I had specially made with Grandma’s diamond in the center.  I wish I could show you and giggle with you about how it sparkles in the sun as we walk to the beach from your house.  I wish you could meet Aubrey and make a fuss over her and serve her dinner on your porch.  I wish we could wedding plan together.

Aubrey and I will be married on the beach down the road from your house.  Our names will be painted on the side of the wedding shoppe you always liked.  Your best friend in the ministry has said she will “channel” your spirit so that you can once again lead my wedding ceremony.  (Please make this easy for her, Ma, and remember there’s no need for dramatic sweeps of wind or rain during the ceremony, okay?  I promise I will know it’s you.)

The sculpture you began when I was born is a work in progress, ever-changing.  By the time I see you again in heaven, there will be another set of little hands drawing and sewing and carving out a life of her own.  Perhaps she will be wearing my ring and thinking of the generations of women who started out before her, and the generations who will come after and what mark they will make on the world.

I miss you every day, Mom.  I remain proud to be your daughter and humbled to bear your resemblance.  And I will always be grateful for our matching hands.

With love,

S.L.C.

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ringDaily Prompt: Immortalized in Stone

Your personal sculptor is carving a person, thing or event from the last year of your life.  What’s the statue of and what makes it so significant?

Daily Prompt: Dear Mom

Write a letter to your mom. Tell her something you’ve always wanted to say, but haven’t been able to.

Where was God?

Since the Sandy Hook Elementary School tragedy on December 14, my heart– like the hearts of parents across the world– has been heavy.  I have not let my second grader out of my sight since I picked her up from school on Friday afternoon.  We have cuddled more, talked more, touched more.  I have listened more.

And I have thanked God for every minute because I know how precious and un-guaranteed our time together is.

Before I collected Hannah at school on Friday, I went to my son’s residential treatment center to pick up clothes and medicine for his regular weekend visit to his Dad’s house.  Alex had been in the hospital because of stomach issues since Tuesday afternoon.  He was discharged after lunch on Friday.

When I left Alex’s room and crossed the hospital lobby Friday morning, I said a silent prayer of gratitude.  We are blessed to live close to a world-renowned children’s facility, and everything about it is exceptional.  The lobby has wide open space and designs that catch the light and make patients feel like the folks who work there don’t have to commute to work because they must just descend from the heavens right through the skylight, like angels.  Everyone– from the security guards to the surgeons– loves children and cares for their families as if it were second nature.  When I walked through the hospital on Friday, I felt comforted, cared for, safe.

That was before I heard about the shooting.

On the drive back to our neighborhood with Alex’s things that had been laid out on his bed by his staff neatly tucked into a bag beside me, I listened to our local news station and began to cry in the car.

Eighteen children, they said then.  It couldn’t be.

Between the ages of 5 and 10, they said then.  No, no, no….

A familiar pain pierced my insides, the sort of heartache that makes new parents leave the movie theater after a child-abduction scene or stop eating beef when they hear a news story about a school-age kid dying after ingesting a half-cooked piece of hamburger.  You know– the kind of pain that is not from your own family experience, but that threatens your security anyway.  That makes you want to hug your kids right-this-minute and find some-kind-of-comforting words to say to the other parents, because you know it could easily be you who needs the comfort-that-no-one-can-really-bring-you-no-matter-how-hard-they-try.

I dropped off Alex’s bag and sped to Hannah’s school.  More cars than usual were waiting early.  I walked to the front lawn and stood with my hands in my pockets, trying to keep casual and not let the thousand words in my head explode on the scene all-at-once.

I looked around at the other parents, a beautifully diverse crowd of every color, background, family arrangement.  I looked at the school and the artwork in the windows.  I looked at the houses across the street with their holiday decorations and shutters and shrubbery. 

I realized in a more-than-speculative way that no one, anywhere, is really immune from the tragedies that hit the news.

I caught the eye of Hannah’s first grade teacher and she crossed the lawn to meet me.  I had been keeping friends updated about my son’s health and sending prayer requests over the previous days and she was happy to hear that Alex was out of the hospital.  As she embraced me, she said:

“I gave Hannah two big hugs today– one for her and one for you.”

Again, I felt comforted, cared for, safe.  And grateful.

Hannah and I spent a quiet “girls’ night” watching movies, eating popcorn and chatting with friends who were staying with us for the weekend.  I thought about how we will talk about this terrible thing that happened, and I wondered what she will hear at school on Monday and what questions she will ask.

As the weekend continued, I learned more and more about what happened at Sandy Hook.  Now they were saying twenty children…

… first graders….

Last year my first-grader Hannah amazed me with what she learned and how she grew.  She was a compassionate, beautiful light in our family and my proud mama heart secretly felt there was no way she could ever impress me more.  Then came this year, when she has blossomed beyond my expectation.  I listened to more news stories and I cried for the parents who would never know that second-grade feeling.

I choked through a video of heroic teacher Kaitlyn Roig explaining how she hid her students in a tiny bathroom and told them they were loved because she believed that was the last thing they would ever hear.  I sobbed reading about 27 year old Victoria Soto who hid her students in cabinets and closets, saving their lives by telling the shooter the kids were in the gym before he shot and killed her.

Aubrey told me I had to stop watching the news and reading the stories.  But I didn’t.  Like everyone I knew, I was searching for some meaning, wrestling with questions no one can really answer: 

Where was God in all of this?

What precipitated such horror?

How would the press, the doctors, the “specialists,” the politicians, the parents respond and explain?

When the reporters said the words:

“… autism spectrum… mental illness…”

I looked for the first time at the face of the 20 year-old killer.  I have only seen one picture of  him because I cannot bear to look any closer.  In the picture he looks young, skinny, with a mop of brown hair.  More innocent than his actions would reveal him to be.

And more like my son than I had expected.

I read a beautiful post at ProfMomEsq by the mother of a 5 year old daughter on the autism spectrum.  She writes:

“My little girl has so very much in common with the 20 young lives cut short by a senseless act of violence.”

She goes on to describe her heartbreak at hearing implications by reporters that the killer may have done what he did because he was somewhere on the autism spectrum.  When I read her post, I felt heartbroken too.  There is something about people making the connection between autism and what happened to 20 innocent children at Sandy Hook Elementary that is not only wrong and unfair, but that saps the energy of parents like me, somehow twisting the sadness we feel into anger and defensiveness.

And the truth is, as Prof Mom Esq plainly and clearly stated:

“Autism is a neurologic disorder; it is not a mental illness.”

Still, even as armed with information and resources as I am, a choking, cold grief encompassed me last night as these different stories and images came together in my head.  My daughter, so like the child victims.  Her compassionate teachers and suburban school, so like Sandy Hook Elementary.  The parents…

And a troubled boy in a photograph who did this terrible thing.  A person we all will speculate about and condemn and probably never, ever understand.

Autism does not cause violence.  And violence does not always come from expected or explainable places. 

My autistic son is not a murderer and I have to believe he is not in danger of becoming one.  But he is challenging and misunderstood and often troubled.  And I am a parent who has been asking for help for him continuously since he was a toddler.

How many other parents are out there, asking for help for their troubled children right this minute?

Another post crossed my desk today, written by yet another mom, Liza Long, with an important, heart-wrenching, difficult-for-most-to-imagine perspective.  She is raising a son who has intense behavioral challenges and she questions the available resources for those with mental illness.  She writes:

“In the wake of another horrific national tragedy, it’s easy to talk about guns.  But it’s time to talk about mental illness.”

This mother passionately advocates for “a meaningful, nation-wide conversation about mental health.”  And I agree with her.  We need to talk openly about the needs of families and individuals in crisis so we can find things that work instead of creating more problems for them within a flawed system.

So where was God on Friday?  And where is our Higher Power, the Universal Good now?

I remember a story years back about a special needs child who was given a chance to play in a little league baseball game.  Thanks to his peers who made sure his attempt at bat was successful, he scored a home run.  The boy was overjoyed of course, and his father later remarked that he felt the true miracle was not so much in how his son experienced that day, but in how the other kids came together to make it happen.  The boy’s gift to the world– what the father believed his son was put on earth to share– was the opportunity for such miracles to take place.

I believe that is where God is– in the middle of those miracles.

God is between the conversations we are having right now.  He is in the pain we feel, in the ways we are compelled to reach out to each other.  He is in the actions we take to give another person the sense of comfort, security and safety we so desperately crave.

There is nothing that can be done to put the broken pieces of the tragedy at Sandy Hook Elementary back together the way they were.  Humanity is broken and imperfect all the time.  But perhaps all the bits and pieces, the grief and the sorrow can come together in a way no one could ever have predicted.  Perhaps God did not desert us.  Perhaps the miracle is not hidden somewhere in those horrific events or in all those circumstances that came together in all the wrong ways to cause unimaginable suffering for the Newtown, CT community.

Perhaps the most important miracle is yet to be uncovered.  

Maybe it is in the way we will come together now to make a change,

to create a different future,

to have a “nation-wide conversation,”

to open our minds and hearts to the misunderstood,

to protect the innocence of children,

to heal the traumatized…

Perhaps God is here.

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I am grateful for everyone who has felt compelled to write over the last 48 hours and for their honest, raw, heart-felt words.

I have found my higher power in-between your letters and essays, and in the courage you found to share your thoughts.

Thank you.

thirty days of thankfulness.

Thanksgiving is one day, but this year I was challenged to declare my thankfulness for each of the 30 days in November.  Here is my list so far (which will continue to update until December 1st):

autism home rescue 1122201201Day 1:  I am thankful to know such amazingly creative people who share their great ideas!

Day 2:  I am thankful that Halloween was “postponed” so Alex could go trick-or-treating with his sister.

Day 3:  I am thankful for music & how great songs endure for generations.  This morning Hannah was telling me her favorite singer/dancer is Michael Jackson & we were singing songs I loved in high school!

… pretty young things repeat after me, say na na na…

Day 4:  I am thankful for the people who “get” my son & know how to best take care of him.  And I am also thankful for being able to have patience & not bite the heads off the people who are clueless in that area. … sigh…

Day 5:  I am thankful for “dream catchers.”  Since I got one from the craft store for Hannie, all her dreams have been peaceful.  But more importantly, I am thankful for all those “good luck charms” and “magic things” that somehow help when I need a little extra faith.

autism home rescue 1122201202Day 6 (election day):  I am thankful I live in a country where I can speak my mind & I can vote.  I am also thankful for my 7 year old’s compassion for others.  On the way to the polls this morning, she said:

“If anyone asks, I’m gonna tell them I’m voting for Obama because my friend Ethan (who has autism) loves Elmo.  And also because I want my Mom to be able to marry the woman she loves!” 

Amen.

Day 7:  I am thankful all that fuss is over.  Now onto the business of making the world a better place for the kids!

Day 8:  I am thankful for forgiveness.  As in, all those little moments where someone we love forgives our crankiness or frustration & inspires us to try again.

Day 9:  I am thankful for choice.

Day 10:  I am thankful for childhood friendships which endure across the years.  Being able to “share my happy” with my dear friend & kindred spirit Linda today made me feel so lucky & blessed!

autism home rescue 1122201203Day 11:  I am thankful my body works more or less the way I want it to & I am healthy.  I am thankful I can run, eat, laugh, stretch, play and enjoy it all.  And I’m also most thankful to have found someone to share life with who appreciates the same things!

Day 12 (veteran’s day):  I am thankful for the folks in the military, past & present.  All the time I am discussing, debating, advocating & throwing my opinions around, I am well aware that without their service, I might not have even the freedom to write a list like this.

Day 13:  I am thankful for the innocence of children.  This morning while I was digging through a closet to find something, an old note to Hannah from “Santa” fell out of a bag of decorations.  Hannah picked it up, read it and asked with wide eyes:

“Is Santa Claus REAL??”

I paused… then asked, “What do you think honey?”

Hannah replied:

“I think he’s real and he’s AWESOME!”

autism home rescue 1122201204Day 14:  I am thankful for technology.  When I finally got up the guts to check my financial tracking software program this morning, I learned that I’m way overbudget.  But not as overbudget as I thought I actually was.  And for some reason, I’m totally cool with that.  So cool, in fact, that I hopped right on over to Facebook to tell 832 people about it.

…hmmm…  Maybe I’m actually thankful for caffeine and therapy…

Day 15:  I am thankful for my daughter’s perspective.  This morning while I was running around like a nutcase getting ready, Hannah asked:
“Mom, if you were a fairy, what kind of fairy would you be?”
Me (loading dishwasher, making lunch & repairing picture frame simultaneously):  “Huh?”
Hannah (patiently explaining):  “You know– like you could be a water fairy, or a season fairy or an earth fairy … Mom?”
Me:  “Umm.. I guess I’d be a stress fairy.”
Hannah (taking a deep breath):  “Okay, Mom.  You can’t be a stress fairy because stress fairies don’t do anything.  So you can be a water fairy who’s kind of stressed out, okay?”
I think my daughter is trying to do a Solution Focused Consultation.  I just love the heck outta that girl!
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autism home rescue 1122201207Day 16:  I am thankful for healing touch.

Day 17:  I am thankful for do-overs.  As in, the second chances granted by the bigger kids when we were the littler kids and messed up during a game.  I discovered do-overs come in handy in lots of situations… relationships, parenting, careers, cooking, homes, haircuts… you name the flub, I bet you can change it with a deep breath and a compassionate do-over.

Day 18:  I am thankful for Sunday afternoon down time with nothing to do but snuggle in bed.  Day 19:  I am thankful for caffeine on Mondays.

Day 20:  I am thankful there are alternatives to Saran Wrap.  Seriously?  You’re gonna rip right in the middle, stick to yourself & make me cover the bowl with six pieces?  But you can’t ever stick directly to the bowl now can you?  Grrrrrrr….

autism home rescue 1122201206Day 21:  I am thankful for the kind of love that is simply being present.  Yesterday I began the heartbreaking process of having Alex classified as a “disabled child.”  When my anxiety peaked after a long day of paperwork & questions & trying to figure out Thanksgiving preparation, it all tumbled out on the phone with Aubrey.  Instead of fixing or rationalizing or explaining, Aubrey simply asked:

“Do you want me to go with you tonight to see Alex?”

I am so thankful for that kind of loving kindness.  Aubrey’s presence in my life just makes everything better.

Day 22 (thanksgiving):  I am thankful for holiday celebrations with my children.

Day 23:  I work above a major department store which is famous for its animated holiday light shows.  We can only hear the music from certain parts of the office.  I am thankful that for the next month every time I use the closest bathroom to my desk, I’ll be able hear the Nutcracker Suite and Julie Andrews’ voice loud & clear.
I am thankful for this because it is really hard to remain stressed out at my job when I’m hearing Christmas music every time I pee.
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Day 24:  I am thankful for good hair days, inside jokes with my daughter, old classic cartoons, good coffee, breakfast in bed, playful chihuahuas, a great run on the treadmill, kid sleepovers, date nights, stolen kisses & lots of random laughter.  Basically everything that makes a free Saturday perfect.
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Day 25:  I am thankful for trust.  The kind of trust that comes when someone else says, “Everything will be okay” and you believe them.
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autism home rescue 1126201201Day 26:  I am thankful for photographs which capture routine, everyday moments.  I know that years later, those pictures will become important pieces of the puzzle of our family life and future generations will appreciate them more than I can imagine right now.
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