High enough to see beyond horizons….

Today 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:

 

Dear 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

~*~*~*~*~*~*~*~

Never Assume Anything

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.

Beautiful Hannah Rose

Happy Birthday my dear sweet Hannah Rose! 

Eight years ago today you came into the world at 11:10 pm on your actual due date, making you the first female in our family to be on time for anything.  Dr. K. said it was the most perfect birth he had ever witnessed, and I *knew* that God was right there in that room with us.  When you were born, Dr. K. put you in my arms and you raised your little head and looked straight at me.  It was the happiest day of my life!

I love you more today, eight years later, than I could ever have imagined then.  You have brought a magnitude of hope and sunshine into our family.  I admire the way you see the world, your sense of humor, your gratitude and appreciation for life.  I am honored that I was chosen to be your mother and I just want you to know I so enjoy the life we have together.

This morning I noticed the note and picture you left on the fridge.  You drew yourself with me, Alex, Aubrey, Dad and three little dogs, and wrote:

“I love my family each and every day.”

Ditto, beautiful Hannah Rose– we love you too!

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 …

In 2013, I want to make this place your home…

The song in my head on this New Year’s Day:

I know this song was not written about autism or me and my son.  But when I listen to it, it touches my mama heart in a unique way.  I hear the words and I envision a home where Alex can live happy, healthy and safe with the people who love him most.  I remember how our family worked hard to make the world okay for Alex, to enable him to enjoy everyday experiences, to show him new things.  I think of the anxieties and sensory issues that are so challenging for Alex and so many kids on the autism spectrum.

Thank you, Phil Phillips, for writing a song that inspires this mother to think once again about creating a real, functional home for my son. 

For inspiring me to believe it’s possible for Alex to come home to us, and for helping me to see the detailed pictures of that transition in my head. 

I am grateful for your poetry and your beautiful music.

~*~*~*~*~*~*~*~*~*~*~

“Hold on, to me as we go,
As we roll down this unfamiliar road.
And although this wave is stringing us along
Just know you’re not alone,
Cause I’m going to make this place your home.
Settle down, it’ll all be clear.
Don’t pay no mind to the demons,
They fill you with fear.
The trouble it might drag you down.
If you get lost, you can always be found.

Just know you’re not alone,
Cause I’m going to make this place your home.

Settle down, it’ll all be clear.
Don’t pay no mind to the demons,
They fill you with fear.
The trouble it might drag you down.
If you get lost, you can always be found.

Just know you’re not alone,
Cause I’m going to make this place your home.”

~ Phil Phillips

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….

~*~*~*~*~*~*~*~

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.

~*~*~*~*~*~*~*~

Daily 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.

Special Photo Challenge: INSPIRATION!

This is what inspires me to blog.  Yup, a sweet Halloween picture of me and my kids.  Alex was the grim reaper and Hannah was “Frankie Stein” from Monster High.  A typical family portrait, right?

I like this picture because we all look happy and because both kids stayed still enough to capture this moment.  There are three other pictures in that series, and one good pic out of four is a pretty good success rate for us!

It is said a picture is worth a thousand words.  Well I’m guessing for most inspirational photos a good deal of those words are obvious and accessible and fairly easy for others to discuss and describe. 

For my family, however, words are often locked up inside my son’s head.  And even pictures don’t always give away the concepts underneath the image or behind the situation.  Much of the time we defy description and it’s nearly impossible to place us in any kind of “box.”  The term “think outside the box” doesn’t even cut it– you have to think inside, outside and beyond the oval aquarium to understand my beloved fish-in-a-tree and what it means to me to write about being his mother.

Let me take you behind this picture and into the huge collection of words it is worth, so you can understand what truly inspires me to blog.

First of all, notice how tall Alex stands.  I was scrunching down a bit here, but he is now as big as I am.  In his baby book, I noted when he hit 2.5 feet that he was “half as tall as Mommy.”  He inherited tall, lanky genes from his father and he continues to grow. 

I write because I want to capture this time and hang onto the child Alex I know before he grows into a man. 

When Alex was three I watched him slip away behind a curtain of autism.  Now I know how precious a minute of closeness caught on film can be.  I take nothing for granted, I live day-by-day and (most of the time) I don’t sweat the small stuff.

I write because I am grateful to be here now and I want to celebrate and share these little moments, which I now understand are everything.

I am so often the person behind the camera, but this picture was taken by Aubrey who will one day officially become Alex’s and Hannah’s stepmom.  It is a true joy to share my life with her and to see myself and my children through her eyes. 

I write because I want to shout to the world, “This is my family and we know what love really means!  We struggle, we cry, we laugh and we play.  We are here and we are real and we are thankful that the universe brought us all together.”

See the slightly mischievous look on Hannah’s face?  How proud she is to play her character?  How sweetly she smiles?  From the time she was born (with sparkles in her hair!) Hannah has had a unique role in our family.  She dearly loves her brother, she is compassionate and wise beyond her years, and she hasn’t had an easy childhood so far.  Hannah will be the one person in the world who will know Alex the longest and I am confident they will journey together, wherever life takes them.

I write for my future adult daughter, to share my insights, struggles and joys.  I want Hannah to know my journey as a mother, not because I have answers, but rather because I don’t.  I want her to keep trying when she struggles, to believe she can make it through, to be persistent in finding her strength.  To show her she can do it, I write to try my best to lead by example.

This is how we look post-autism diagnosis.  Post-divorce.  Post-inpatient hospitalization.  Post-residential placement.  Post-losing my mother.  This is my family (including the woman behind the camera) after opening our minds and hearts to a new life which is better than we ever could have imagined. 

I write because my story is only my story, but in the sharing of our collective community of stories, something wonderful happens. 

We create INSPIRATION.

**********************************

http://dailypost.wordpress.com/2012/11/21/special-photo-challenge-inspiration/

Daily Prompt: Play Lexicographer

I love the WordPress Daily Prompt.  Especially when I can highlight some of my favorite ridiculous bloggy writing love from the past.   Several months ago I made up the most delicious word to describe an awesome Alex-Mom moment. 

The word? 

Baskesoccaling. 

The story behind it? 

Click on the picture of my beautiful boy to read on.

Be Like Buddy!

Ohmigosh have I got news for you! 

You all know how I love finding good autism resources to share, right?  Well stay tuned for more information on my latest discovery:

 

Created by the father of a child with autism, the “Be Like Buddy” educational videos and resources are right on target. 

I mean…  RIGHT.  ON.   

As in– the guy who put the videos together knows autism.  The website creators know autism.  The folks who made the educational materials know autism.  The entire team– plus the absolutely adorable and loveable puppet named Buddy who stars in the videos– really understand and connect with families like mine– and YOURS too!

Stay tuned to Autism Home Rescue for more info next week on how YOU can get absolutely free  resources for autism parents, educators & professionals this month at the online launch party for “Be Like Buddy”. 

In the meantime, please go to the “Be Like Buddy” facebook page and Like them to make sure you stay in the loop! 

And while you’re on Facebook, dear loyal readers, please Like Autism Home Rescue’s facebook page too!  (see the handy dandy button to the right on this page!)

the ride.

I just wanna be the mom.

Alex’s head rests on my shoulder in the waiting room, my arm across the back of his chair.  He lets me kiss his hair.  He doesn’t feel good.  I know, his father knows.  We need someone to explain why.

Another puzzle.  His belly, his behavior.  Specialists.  A second appointment.  “You do know your child best.”  Consult, consult, re-evaluate, adjust.

The weight of Alex’s body against mine grounds me because I know he is seeking comfort and he finds it in that unspoken connection.  It is communication and I know what it means, I understand and don’t second guess.

I just wanna be the mom, the one to stroke his hair and bring him soup.  To talk softly or read books.  To let him rest on my lap.

But so much of the time that’s not how it seems to go.  Parents lead teams, fight for justice, find answers, forge new paths…. don’t we?

< sigh >

I am just the mom.  Maybe I’m supposed to feel as if I’m on a horse charging through the forest, riding on to victory!  Wind in my hair, a confident counterpart to a powerful animal leaping obstacles.  Adrenaline rush and excitement at conquering the challenge!

But no, my reality feels more like the Teacup Ride at the amusement park.  Tinny carnival music slightly off key, clanking of safety locks & bars, the whir of start up after a half-hearted warning about risks & keep-your-hands-and-feet-inside-the-car by a lazy, monotone, uninterested attendant.  Then the exhilarating feeling of leaning to the right to be abruptly yanked to the left into an endless circle.  Sliding along the seat, bumping into your cup-mates, grabbing the wheel in the middle to stay stable– and wondering who else might turn it at full force to make your stomach flip flop as you fly around again at nauseating speed.

If you resist the momentum or try to focus on real life beyond the ride, you feel sick.  If you yield to the movement, you find a fleeting thrill– maybe even a joyous freedom.  Then it ends too soon and you’re back to the hot, crowded line to wait for another try.  It’s the resistance that causes pain.  And whether you ride without resistance or not, you’re likely to make yourself sick anyway.

I just wanna be the mom.

I hold my breath and attempt a calm smile, an even tone, picturing a ballroom dancer in a flowing dress being led by her partner around the dance floor, poised gracefully to be turned and dipped and spun at will.  Giving the illusion of control and strength, able to dance without falling, to step without causing pain, to perform a role.

“Yes, we have the information you requested.  Could you please tell us when we might be seen?”

All the while, my mind seeks answers, spinning like a tea cup, trying to focus, feeling confused and frustrated, wondering why this all can seem so hard.

I just wanna be the mom.  I was born to be the mom.  Not the spinning performer, the equestrian archer, the triumphant solver-of-problems!

When it all comes to a complete stop, when my day ends and the safety locks slide apart, I find my footing and move again to the sidelines.  I feel tired.  My head rests on Aubrey’s shoulder and I sink just a bit, as her arms wrap around me, holding me still to stop the spinning inside.  There is relief in that unspoken connection.  It is communication and I know what it means, I understand and don’t second guess.

I still just wanna be the mom.

I will try again tomorrow.