Monthly Archives: August 2011

Through the Looking Glass

 “…Because at its core, it’s a message about tolerance.  About compassion.  About allowing ourselves to look past what we think we see and to find out what really is.  It’s a message about difference.  And about moving past fear into understanding.  It’s a message about the world that we are creating for our children.” ~ Jess, Diary of a Mom, “we shall be free


At a time when Michele Bachmann is getting ridiculous air time touting her ‘family values’ and the ‘bondage’ of the gay lifestyle, I feel called to stand up as a human and say – No.  NO FREAKING WAY. 

Politically, it very specifically states in our own Declaration of Independence the following guidelines for protection of our citizens’ right to be HAPPY:

“We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness. That to secure these rights, Governments are instituted among Men, deriving their just powers from the consent of the governed, That whenever any Form of Government becomes destructive of these ends, it is the Right of the People to alter or to abolish it, and to institute new Government, laying its foundation on such principles and organizing its powers in such form, as to them shall seem most likely to effect their Safety and Happiness. Prudence, indeed, will dictate that Governments long established should not be changed for light and transient causes; and accordingly all experience hath shewn, that mankind are more disposed to suffer, while evils are sufferable, than to right themselves by abolishing the forms to which they are accustomed. But when a long train of abuses and usurpations, pursuing invariably the same Object evinces a design to reduce them under absolute Despotism, it is their right, it is their duty, to throw off such Government, and to provide new Guards for their future security.”

These first declaratives of freedom for men have evolved so very far already – to include women, to include people of color and persons with disabilities.  Unfolding slowly over the last hundred years, it has at times gotten ugly along the way and we are far from the finish line.  But we are getting there.  And we must push on to include EVERYONE in these unalienable rights.  Not just with legislation but with action, with compassion, with love and tolerance.

The few, like Bachmann, who insert themselves in front of the camera and consistently spew hate and intolerance under the guise of political posturing for the ‘future of our family values’ shall someday find themselves alone and their voices stifled.  Because the REAL Americans who have yet to gather up collectively to speak WILL do so.  They WILL rise up.  And the message will be clear:  We ARE a country of love and tolerance.  We ARE – at our very core – Patriots.  Patriots in the purest sense.  Patriots dedicated to the founding values of this country.  Values that have continued to evolve and INDEED DO INCLUDE EVERY PERSON.  Regardless of race, gender, sexuality or ability.

Religiously, there are those who speak of ‘God’s Law’, the Holy Bible and the ‘abomination’ that is homosexuality.  I just do not see how anyone who claims to be a follower of Christ could deny fellow brothers and sisters the right to pursue love and happiness and a full life.

So I feel the need to include another perspective – that of a mother to a beautiful little girl with a genetic abnormality.  Someone who was ‘born that way’.

We are all creatures of God.  Created by Him, of His own design.

My daughter was born with a missing portion of her 4th chromosome.  She has physical and developmental disabilities directly related to her very design.  HIS design.

Though my daughter was born with normal, working female genitalia, I do know many children with chromosome deletions that were designed by God with some anatomical differences.  Whether those differences have included both male and female parts, they remain differences nonetheless.  In some cases, the biological gender of a child is truly up for interpretation.

The graphic nature of this conversation may be uncomfortable for some.  But I can assure you these unique children – children of God like you and me – are uncomfortable, too.  Whether their sexuality is affected by physical differences or sexual preference, they deserve love in this world.  They deserve to find a place in this world where they can learn of themselves and find value in the gift they are.  They deserve as everyone does to move beyond judgement and discomfort and learn to walk tall knowing that regardless, GOD, their One Designer, made them as they are ON PURPOSE.  God makes no accidents.  We do.  With our words, our fear and OUR expectations of how WE interpret His design.  So whether my daughter has a working vagina or if she had been born with ovaries and a penis – HE MADE HER THAT WAY.  If her body in its uniqueness defines the desires of her heart, who are we to judge what His plan for her is?  And why would we think His plan included suffrage based on who she loves?
Let me tell you.  When RM was born and we received her genetic karyotype [46,XX,del(4)(q32.2-ter)] we knew immediately that though her DNA said she was a girl, there could be any number of anatomical differences within her affecting her future sexual identity.  That made absolutely no difference in how fiercely we loved her from the start.  It made no difference in our desire to just want her to grow to be HAPPY.  A hysteroscopy at age 3 confirmed that she had all of the normal organs of a little girl.  It was welcomed news, but it was really irrelevant in the bigger picture.  She is our baby.  And we love her just the way she is.

Jesus was sent to us to teach us to love one another.  Above all else, that was the singular gift of Him.  Yes, there were some guiding commandments and basic law that were also handed down.  But like our Declaration of Independence, doesn’t God also have the right to amend those ideals?  He gave us the gift of Free Will – can He not adjust His own judgments as humans move forward?  Thousands of years ago, a baby like mine rarely would have survived in the womb or surely would have died soon after birth.  We have evolved.  We now are witness to medical miracles every day.  Do you really believe that God’s Law has not evolved as well?

A lot has changed since the time of Christ.  A. LOT. HAS. CHANGED.  Unless God Himself comes back around and tells us He hasn’t changed His mind – I simply have to believe that He adjusts and grows as we all do.  HE is watching us and living within us.  He is experiencing the progress firsthand.  As His only Son was sent to do the same, I can only imagine how pleased He must be with those who continue to preach love, tolerance AND acceptance.

And I can only imagine His angst over those who have stepped through the Looking Glass and found Michele Bachmann.
PS, Michele – Would you have the heterosexual balls to stand in front of a soldier who has sacrificed a limb on your behalf in the name of Freedom and tell that soldier he is worthy of a medal but not of love?  Oh yeah that’s right – you’d deny him the right to serve in the first place.
[Editor’s note:  I know YOU support our troops!  So please go to CMKAA and show your support for the Caring for Military Kids with Autism Act.  1 in 88 military children are counting on you!]

A Toe-Walking She Will Go

I’m already nearly in tears.  I make mental note to never get to the school early again.  The waiting is killing me.  It’s 2:28pm and the last ten minutes have been pure torture.  Another mom is sitting nearby with her typical daughter.  They are waiting, too.  The mom seems just as anxious.  I have never met her, but I feel the need to cut the tension with some small talk. 

“I still cry every time I pick her up from school.” 

“I know what you mean,” she replies.  “It seems funny.  It’s not like she’s away from me that long but I am always so anxious to see her again.” 

“Me too.”  I turn to look down the hallway for the millionth time.  Nope.  Not yet.  “It’s just such a blessing to know she is so happy here.” 

A truly adorable little blond-haired girl is making her way to the lobby, escorted by one of the dozens of truly adorable young ladies that teach here.  Mom and sister perk up immediately and the little girl having seen her mama starts squawking sweetly and flapping with excitement.  Mom eases down to her knees and opens her arms widely – her baby nestles in deep and Mom is clearly melting to have her baby back.  Mom asks little one about her day at school but the little one is unable to answer with words so instead her body language does the talking for her.  She is truly happy to see her mother. 

I am now bursting at the seams with anticipation of getting my hands on my RM. 

Buses have shown up and other students are making their way with their escorts to the front door.  One by one.  …Autism is one word, but there is no one autism…  Each of the children ranging in age from 3 to 13 have their own signature style of exiting the building.  Some are squawkers, some are flappers, some are just quiet and have the most peaceful looks on their faces.  Regardless of the way they work it down the autism runway – they are all clearly members of The Club. 

Now you might think I am an idiot, or just plainly a jackass – but I don’t view my daughter as a Club Member.  Maybe it is because of all she has already been through medically just to be here.  Or maybe it is just that I think she is the freaking most fabulous creature ever.  Yes.  I meant to word it that way.  Freaking.  Most.  Fabulous. Creature. Ever.  I really do not know why it is so hard for me to look at my little girl as autistic. 

But here she comes.  In all her glory she is making her way down that runway singing her heart out with lyrics no one is the wiser to and bouncing so joyously on those toes with every step.  She is happy.  HAPPY.  I don’t know how I managed to pop out two of the most cheerful, positive rugrats on the planet – but apparently I did.  And I do believe that nothing could change that about them.  Not even autism. 

I slip off my chair as she sees me and I throw my arms out wide.  She runs to me screeching with excitement and smiling so hard I wonder how she can see where she is going with those chubby cheeks pushing up at her now squinty eyes.  She throws herself into me hard and I squeeze her so tight perhaps I cause her to lose a breath.  But no matter – we are both so excited to be reunited once again. 

I stand up and she takes my hand as we walk to the car.  She is bouncing on clouds every step of the way.   As it should be.   Who am I to judge my daughter by her disabilities rather than her happiness?   

It may have a name – autism – but it doesn’t have anything on my bouncy, flappy, beautiful girl.  She is my daily gift to remind me that we are all unique by design.  Pure and simple.  We are all graceful in our own way.  Whether we sashay, roll, stumble or toe-walk our way down that runway.

A toe-walking she will go.  A toe-walking she will go.

She is mine.  Fashionably bouncy and ALL. MINE.


Tramps and Bums

In what space are you the most real?

Is it among friends?

Among strangers?

When you stare into the mirror?

I found myself – my one true self – out in the Atlantic Ocean.  Not when I looked at my reflection in the water but when I looked into the faces of five amazing, strong and very real women.

We ranged in ages from 36 and up.  All of us mothers, some grandmothers.  Years of life experiences that unfolded at the dinner table each night.  Like velvet petals on a summer rose – each one delicate in its beauty but anchored hardily at the sepal.  Withstanding torrid drought spells and torrential rains, hard times come and gone and come again.

But there were good times and fast stories, too.  “Tramps and Bums!”  Oh, how these women told stories.  We were strangers as we first took our seats at the table, casual introductions as we laid our napkins in our laps as ladies do.  Four days passed.  We excused ourselves and parted ways as lifelong friends.  Only soiled linens abandoned at the table were the wiser. “He took it out!”  I hadn’t laughed so hard or felt so connected to my own being in so many years.

I was witness to dolphins racing freely through the wake of the ship.  I ate alligator.  Have you met me?  I quiver when my SGM stocks our freezer with venison.  I lay in a hammock for hours swinging in the wind, wrapped in a soft robe and feeling the sun keep watch over me.  I ached for my babies but I soaked in quiet tears of relief.  I longed for my husband’s arms to hold me, his lips to welcome mine but I knew it was better this way.  A space to be real.  To remember what real was.

And then I was home.

reentry [ree-en-tree]

noun, plural –tries

  1. an act of reentering.
  2. the return from outer space into the earth’s atmosphere of an earth-orbiting satellite, spacecraft, rocket, or the like.
  3. Law.  the retaking of possession under a right reserved in a prior conveyance.
  4. Also called reentry card.  In Bridge.  a card that will win a trick enabling one to regain the lead previously lost, especially the lead from a particular hand.

I am ready for reentry this time.  Ready to reclaim the real me.

More than a mother.  More than a wife.  More than an advocate.

The real me.

The girl who sang her heart out every chance she had.  In the shower.  In the car.  In front of a thousand people. 

The carefree young woman who drove her Jeep fourteen hours straight from Connecticut to Florida to sleep on the beach because she could.  Three times in one year.

The businesswoman, the protector and the born-again college student.

It was an epiphany for me.  Never again shall so much of the everyday separate me from all of the ingredients that have been folded in over the years to make me the recipe I am.  100% Real Me.

Many thanks to the amazing women I shared my brief reprieve with.  We as mothers and wives who have sacrificed for our families must remain vigilant to never lose our way back to the raw, real individuals we were before –

“Tramps and Bums!”



Right About Now

I am unusually adrift. 

Not in the manner you may be thinking.  I am literally adrift.  On a big freaking boat out in the ocean.  I believe the proper term is ‘ship’ as it is much larger than a boat.  But I am a rather simple creature, so to me it is just a boat. 

I am probably on my third or fourth drink of the day as you are reading this.  Yes, even if it is before noon.  On this boat it is permanently five o’clock for all intents and purposes.  

I am adrift with a fellow Warrior Mama.  She is my partner in crime on this cruise.  She has earned this departure from reality just the same.  Her son attends school with RM.  It’s been a long road to hell and each of us are just now finding our way back.  Screw Holland – I swear I was dropped in the jungles of Vietnam circa 1968.  Having survived is one thing.  The effects of such battles are everlasting.


We will be adrift for a few more days. 


Far, far from the Island of Reality.  


There is more than enough time to live in the moment on this boat, and this moment was a long time coming.  


See you later, my friends. 




Oh, and CHEERS, of course! 



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