RAT BASTARDS!!!

What sort of evil, wicked, degenerate

RAT BASTARDS

steal from a baby!?! Someone stole Squirt's battery-operated ride-on tractor during the night! They came into my parents' fenced yard and stole it! My Grammy got that tractor for him, and he loves it! It's probably his favorite toy - and someone STOLE IT! Stole, from a two-year-old boy!

What a hell of a world we live in these days.I hope whoever stole it trips over it and breaks his (or her) neck!

My Heroes!

Last night I decided to save myself a step and just fold the laundry as I took it out of the dryer instead of the usual method of taking it out of the dryer, tossing it in the hamper, taking it upstairs, and then folding the clothes.  This meant that I was downstairs in the basement for a little longer than usual, and apparently it was too long.
Apparently, my children decided that some sort of Basement Monster had eaten me.

I was almost done when I heard the door upstairs open and Ellie's voice say, "Mommy?  Mommy?  Mommy?" in a questioning and somewhat worried sort of way.  I then heard Marty's small, brave voice shouting, "Don't worry, Mama!  I coming, Mama!  I coming!"  I looked up the stairwell to see my fierce, lion-hearted Marty coming down the stairs wearing his Batman cape and wielding his wooden toy sword.  Right behind him, framed in the light from the kitchen, bending over to look over her brother's shoulder, was my brave and true Ellie.

They had come to rescue me - together.

My heroes.

The Worst Day of My Life - the Diagnosis

On an Autism/Cerebral Palsy group I belong to, a mom with a new diagnosis asked how others handled it.  After writing my response, I thought it was maybe worth posting here as well, in case anyone else needed to not feel alone.  Here it is:

Honestly... I was suicidal.  Ellie was 18 months old when she was diagnosed with Cerebral Palsy, three years and three months when the Autism was confirmed as well.

Ellie had PT starting at nine months old, but everyone (doctors, etc) thought her physical delays were just being "a little bit preemie".  When she started standing and weight-bearing, I could see that her legs were not straight, her feet were not right.  I took her to see an orthopedist in Muncie, Indiana when she was 12 months old.  His name is Dr. Jeffrey A. Heavilon and he works for Central Indiana Orthopedics.  He is one of the worst things to ever happen to us - never, ever, ever see him!

Dr. Heavilon did not even look at her.  He did not want me to remove her pants.  He did not touch her.  He came into the room, asked me about her development, asked how old she was, and when I said, "She just had her first birthday earlier this month," he shook his head and said, "I won't even look at her until she's at least 18 months old.  Kids go through some strange stages as they grow.  I'm sure she'll grow out of it."
So I went home feeling very foolish, but still in my gut I knew something was not right with her legs and feet.  I made another appointment with him for 2/11/04 when she would be 18 months old.  I will never forget that day.

This time, when Dr. Heavilon came into the room, I was ready.  Ellie was naked except for her diaper - he HAD to look at her this time, had to SEE her body.  He came in with a student, all arrogant smiles and beneficence.  He looked at Ellie, hanging onto the table and cruising around the edge, and he went pale.  He covered his mouth with his fingers, and said, "Excuse me a moment, I forgot something," and motioned the student to follow him back out into the hall.  My mom and I both said, "That was weird," at the same time.
Dr. Heavilon returned alone and promptly sat down in his chair.  He watched Ellie cruise for a moment, then said, "I don't think there's anything I can do to help you.  I don't think there's a surgery that can correct this.  I think there must be something neurological involved."  I said, "What do you mean?"  He said, and I will never forgive him for this, "I think she'll walk.  I think she'll find a way to get around, but she's going to be crippled all her life."  Crippled.  The doctor, the professional, the expert, said my child, the center of my universe, my entire world, would be

CRIPPLED

I was numb.  I was in shock.  My ears were ringing and my vision was blurred with tears.  I watched my little girl, oblivious, happily cruising around on her twisted feet and legs, hanging on to anything she could grasp.  "But there must be something," I begged, "what about braces?"  He shook his head sadly and said, "Oh, you could put braces on her, but they would only hurt her.  She's going to hurt always, so you'll have to choose the kind of hurt you want her to have.  If you leave her alone, she'll find her way."  I rallied, a little.  I said, "I have orthotics in my shoes because my feet are flat, and they help.  Braces wouldn't help me because I'm not growing, but she's still growing.  Won't braces help her grow right?  Can't we help shape her bones right, so they'll be right when she's done growing?"  He was quiet for a moment, then wrote the perscription for ankle-high braces, handed it to me, and left the room wihtout another word.

I cried and cried and cried until my eyes were too dry and grainy to produce more tears, but I kept sobbing anyway.  I held and rocked my Ellie for hours.  She had just had her first surgery (eyes) on 2/9/04, and she was already depressed herself because she didn't know why she'd been hurt, so she was content to let Mama hold and rock her and love her.  His evil words kept chasing each other around and around in my head - and he'd never said what he thought was wrong, only that she'd be crippled, and hurt always.  Over and over.

I'm going to be honest here.  I hope I don't offend anyone, or shock anyone, but I'm going to tell the flat and honest truth.  If I'm honest, maybe it will help a mom who felt this way and thought she was alone, or a monster for thinking it.

You see, I was in Honors College at Ball State University, and the first class I was given was "Genetics and Bioethical Decision Making."  We were taught, very strongly, and throughout our entire college careers, to be Bioethicists.  Bioethics teaches that genetics and quality of life are paramount.  They are in favor of aborting any baby who shows signs of any genetic or physical "flaws" before birth, of euthanising babies who are shown to have "flaws," of euthanising children/adults/elderly who have "flaws" or are injured in accidents or are too infirm to lead a "productive" life, and for instituting regulations on who, genetically, is "allowed to breed."

So, four years of brainwashing and a negligent doctor's evil words raced each other around and around in my head while my precious and crippled baby was sleeping in my arms, little head on my shoulder.  She slept, and I researched online.  I was looking for the most gentle, painless way possible for ending a life - a pair of lives, actually.  I couldn't abandon her to someone else raising her, even if I "wouldn't care" after the deed was done.  I couldn't leave her crippled, and hurt always, either.  So, I researched, starting that night.

The next day, I called our family doctor, sobbing.  He spoke to me himself because I was so upset.  I told him about the evil Dr. Heavilon.  He called Dr. Heavilon and spoke to him himself, then called me back.  He said, "Dr. Heavilon told me that he didn't have the heart to tell you, she has Cerebral Palsy."  I didn't know anything about CP other than, in high school, one of my acquaintances had a twin brother with severe CP.  His brother was twisted, body frozen into a contorted position, he drooled, he was unintelligible, and he was profoundly mentally retarded.  I just could not bear the thought of my Ellie that way.  I called the doctor who is now Ellie's Neurologist and was able to get an appointment a week away.

I did some research on CP, but all of my initial searches turned up grotesque photos of profoundly affected children and adults.  I went back to my darker and more permanent research.  After a few days, I chose a method and worked out a plan.  I collected the means.  I suddenly felt better, lighter, and I enjoyed the last few days before the appointment with the Neurologist.  Ellie and I played and enjoyed each other, and life was brilliantly sweet.  I told special people in my life how much I cared about them.  I wrote out a letter to explain, and as an informal will.  I made passionate love to my Husband.  It was all going to be okay, and Ellie was NOT going to "hurt always" or be "crippled."  Mama was going to take care of everything.  Mama was going to save Ellie from a miserable life of shattered dreams and pain.  It was the best and only option I could see, and I had accepted it, embraced it.

The day came.  In the morning, we went to see the Neurologist, Dr. Laurence Walsh of Riley Children's Hospital in Indianapolis, Indiana.  My "other" plans were for that evening, after my horrors had been confirmed by this doctor as well.

Dr. Walsh came in, smiling, nose twitching like a bunny rabbit.  He had a facial tick that kept him twitching the whole time, and made Ellie giggle.  He examined her, talked to her, talked to me and my mother, smiled, tickled her, and was very off-handed about the CP, as if it was nothing.  I finally asked him about the CP, and what it would mean for her life.  He assured me that CP was "an umbrella term" for a wide spectrum of symptoms caused by injuries to brain of an infant prior to, during, or shortly after birth, and that it would never get any worse.  He tickled my brilliant girl (who had been speaking in full sentences for over six months) and said, "You have nothing to worry about here."  I told him about Dr. Heavilon, and he grew very quiet and obviously angry.  He said, "I have dealt with that man before, and he should not be in the position he is in.  Ignore what he said.  I have CP, and Tourette's, and I'm a surgeon!"  He did explain the physical difficulties that would probably lie in her future, but he was optimistic and said I had the perfect approach - to keep her bones as straight as we could.

He upped her therapies to PT and OT both and referred us to Orthopedist Dr. Joseph Bellflower, now of St. Vincent's Pediatric Orthopaedic Surgeons of Indiana (POSI).  Dr. Bellflower is an amazing and wonderful man.  Ellie is having surgery at the Chicago Shrine Hospital in October, and Dr. Bellflower cleared his schedule so he could attend her surgery!!!  He is actually going to go and be present while another surgeon operates on Ellie's feet, just so he can see what is done in case we have any emergencies afterwards, and he has volunteered to do all of her aftercare.

After that appointment with Dr. Walsh, I cancelled my morbid plans and called a therapist.  I was in therapy for three years, and my therapist said that I would grieve again and again, probably for the rest of Ellie's life, because of her disabilities.  If I think about it too hard it tears me up inside and I have another crying jag, but this is life, and this is how it is, and how it will always be.  You accept, adjust, and adapt, or you don't survive.

Ellie was diagnosed with Autism 19 months later, but we already knew by then.  Her PT and OT had both hinted, and I had researched, so we knew.  After she turned two she had started to "go away."  My brilliant toddler who spoke in full sentences and memorized entire Pixar movies verbatim just faded.  The Autism diagnosis was less dramatic (and traumatic) than the CP diagnosis, and we were prepared.  It was just confirmation.  I remember hearing, in my mind, a huge clanging sound when the psych confirmed our fears, like an enormous iron door clanging shut forever, but that was the worst of it.

I have since decided that the CP is probably not as bad as the Autism, but they buffer each other.  With the Autism, Ellie will never care that she is physically different from other kids.  With the CP, Ellie already had services and allowed us to have an earlier than usual Autism diagnosis, which in turn allowed us to begin interventions younger.  The dual diagnosis allow us more therapy sessions per year with our insurance.

Yeah, the silver lining is pretty thin, and I'm grasping, but it's all I've got.

Anyway, that was how I felt when my child was diagnosed.

The Awesomeness Continues!

Tonight was a night of mini-miracles.  Ellie actually ate what the rest of us ate, and she ate a lot of it!  She also drank from my very full, and very open, glass of tea all by herself.  As in, without any help, she picked it up and drank from it!

Then, Marty brought me his boy baby and said, "Hold dat for a minute, Mama."  I held the baby doll on my shoulder like a real baby and loved it for a minute.  Ellie reached out and took the baby from me.  "Oh no," I thought, "she's going to chew on it and Marty is going to come unglued."  I was wrong.

Ellie held the baby to her shoulder, wrapped her arms around him, leaned her cheek against his head, and loved him for a few seconds!  Then, she carefully laid him beside her in the chair and played with his fingers while she watched her "Tiny Planets" clip on my computer.

The princess is in that tower, and she's peeking out more and more often!

Worth Everything

Yesterday I received one of the greatest gifts ever.  I was playing in the pool with Marty and Ellie.  Marty, up to his neck with his cute little water wings, came bouncing over to me.

He stretched out his little arms as far as they would go and put his little hands on my shoulder.  He leaned his face in and pressed his cute little nose to mine, with our foreheads together.  In his sweet, precious, two-and-a-half-year-old baby voice, he said with more tenderness than you would imagine a child could express,

"My love you, Mama, all da time."

and then he kissed me.  I hugged him tight and kissed his little cheeks and told him how much I loved him, too, and how good he made me feel inside.

Then, he bounced off to catch a wind-up fish, while I sat there with a heart so full it ached, and eyes wet with more than pool water.

These are the moments we live for.

Totally Typical - aka FANFREAKINTASTIC!!!

Not even an hour ago, Ellie did something totally astounding, utterly amazing, and absolutely typical of a 6-year-old!!!

She was sitting on a large yard ball in her bedroom, bouncing on it.  This is not amazing, this is all day every day.  This is Ellie.

While bouncing, per usual, she did the astounding, fantastic, amazing, typical thing that made my heart leap for joy and tears well up in my eyes.

She said, "Look at me, Mommy!  Look at me!"

She made direct eye contact with me, and said, "Look at me, Mommy!"

Can you believe that?!    I said, "I see you!  Wow!"  She giggled and bounced even higher.  I praised her more.  She bounced as high and hard as she could - and she kept eye contact with me the whole time!

For a few precious heartbeats, my little girl was a typical 6-year-old.

Footnote to "Ode to My Husband"

Apparently I aggravated a couple of people because I said:

I've seen blogs that people have used as weapons against those they "love," blogs where they air their private grievances publicly, where they even criticize their "partner's" abilities in the bedroom in a public forum, and it sickens me.  I use the quotes because I find it hard to understand how a person can so casually slap someone they supposedly "love" with these libellous and insulting lines.  I also find it hard to understand how the victims can continue to live with, or date, people so vicious and shallow that they would rip and tear their "mates" before a crowd, then leave them lying there bloody.


These blogs make me think so strongly of one line above, "...and when we quarrel, we shall do so in private and tell no strangers our grievances."  But, then, we meant our vows.  However, we as a species live in a disposable society - marriage, children, morality...  Everything is disposable these days.  But I digress...


Apparently I made these people angry because I believe that, if you love someone, you should not belittle them in front of others.  Would you want to spend a life, or even a day, with someone who stood on a streetcorner and called you a "wh--e" or a "pr--k"?  I wouldn't.

Now, when I wrote that, I did not have anyone in particular in mind.  I named no names, and was not "aiming" at any one specific person, or even a group of people.  I have seen a lot of blogs - way too many - that fall into that category.

So, if you felt that I was writing about you, or if my opinions pricked your conscience so badly that you were angry or felt guilty, then perhaps it's time for a little introspection and self-analysis.

Ode to My Husband

I just realized how rarely I've mentioned my Husband in my blogs.  Lest anyone think otherwise, I thought perhaps I should say a few words about My Love.  I suppose my comments are so few and far between because, as a general rule, we are very private people where our relationship is concerned.

When +Geoffrey Brumback and I were married nine years ago, we wrote our own vows - heck, we wrote the entire ceremony!  We incorporated the Celtic Marriage of First Degree as part of our binding.

"You cannot possess me for I belong to myself.  But while we both wish it, I give you what is mine to give.  You cannot command me for I am a free person.  But I shall serve you in those ways you require and the honeycomb will taste sweeter coming from my hand. I pledge to you that yours will be the name I cry aloud in the night, and the eyes into which I smile in the morning. I pledge to you the first bite from my meat and the first drink from my cup. I pledge to you my living and my dying, each equally in your care. I shall be a shield for your back, and you for mine. I shall not slander you, nor you me.  I shall honour you above all others, and when we quarrel, we shall do so in private and tell no strangers our grievances.  This is my wedding vow to you.  By these vows we swear to be full partners, each to the other.  If one drops the load, the other will pick it up.  This is the marriage of equals."

I've seen blogs that people have used as weapons against those they "love," blogs where they air their private grievances publicly, where they even criticize their "partner's" abilities in the bedroom in a public forum, and it sickens me.  I use the quotes because I find it hard to understand how a person can so casually slap someone they supposedly "love" with these libellous and insulting lines.  I also find it hard to understand how the victims can continue to live with, or date, people so vicious and shallow that they would rip and tear their "mates" before a crowd, then leave them lying there bloody.

These blogs make me think so strongly of one line above, "...and when we quarrel, we shall do so in private and tell no strangers our grievances."  But, then, we meant our vows.  However, we as a species live in a disposable society - marriage, children, morality...  Everything is disposable these days.  But I digress...

My Husband.

My Love, my Heart, my consummation.  My partner, my lover, my provider, my childrens' father, my closest friend, my most vexing puzzle.  He is all of this and so much more.

I love to watch him with the kids.  It makes me all soft and gooey inside to watch him play with them, tickle them, share snacks with them, snuggle them, take naps with them, comfort them - everything.  I love it when we manage to get all four of us into "the big bed" to tickle and snuggle, and I love it when we manage to get just the two of us into "the big bed," too.

I know that I can always tell him anything, no matter what it is, big or small.  I can always share myself with him openly.  I know that there is nothing in the world that can make him stop loving me, or me him.  We're sure of each other.  I know, at this point in our lives, that this is definitely forever.  We've weathered our storms, and our ship is sound.

What?  You thought I was going to pretend that the whole nine years have been candlelight and roses?  Get real.  We're two adult individuals, with our own unique quirks and philosophies, sharing a household, bank accounts, and children.  Of course we have disagreements!  In earlier years, we did and said some pretty mean things to each other.  The "seven year itch" is more than just a joke.  Fortunately we've outgrown those days both as a couple and as individuals.  The wine has mellowed.

I love him.  I love the dimple in his cheek when he smiles.  I love his laugh.  I love how he calls me at work to tell me that he loves me, too, before he goes to bed in the morning.  I love the sweet, tender, and sometimes naughty text messages I find on my cell phone.  I love how he voluntarily does the laundry so I don't have to go up and down stairs with my knees.  Like the song says, "I love how [he] loves me."
I love his butt.  He has an absolutely perfect butt.  (Quit groaning - how did you think we ended up with two kids?)  I love his soft, sweet lips.  I love the way he trails his fingers across the small of my back when he passes through the kitchen as I cook, and I love to press my body against his back and wrap my arms around his waist as he does dishes.  I love his hands.  I have always been fascinated with his hands, with his dexterity, with his strength, with his gentleness.  I once wrote a poem about his hands, titled (fittingly) "Your Hands".

I love your hands.

You play my body like

A consummate concert pianist,

Running your fingers delicately

Over my skin and

Making my senses sing.

You draw beautiful melodies

From the depths of my soul,

Stroking the strings of my heart,

And all with but the tips of your fingers.

Gentle, strong, you reach

Into me, grasping my core and

Setting my nerves a-tingle with

Lapping tongues of fire and ice.

Slow, your caress,

Mastering me, controlling me -

Your instrument -

Tuning me to please your tastes.

Then, playing me, building,

Coaxing, demanding, lifting me to a

Crashing crescendo, denouement

Soft and tender.

I love your hands.

I have not, however, written a poem about his butt.

I love my Husband.  All that I was, all that I am, all that I will ever be, always and forever.

Postponed Surgery & Nine Years of Marriage

I should have posted this weeks ago, but I haven't had time for the computer recently.  Ellie's surgery has been postponed while we do some re-evaluation of her gait structure (in Ameringlish for Laypeople [like me] that means we went to the Chicago Shrine Hospital for a gait study last week).  She is definitely going to have to have the major surgery at some point, but maybe not just yet.  The surgery on her heel will have to be done, but I'm hoping maybe not until the end of summer because she likes to swim so much, and the casts will be itchy.

In other arenas, Husband and I celebrated our ninth wedding anniversary on Friday.  Nine years.  We knew each other for nine years before we started dating, and now we've been married that same length of time (counting the time we dated, we've now known each other for 19 years), but the first nine seem a lot longer than the second nine.  You'd think people would get bored with each other after nine years - at least, I would, or rather, I did - but, amazingly, miraculously, we're not.

Family members and former DeMolay may not want to continue reading past this point.  Consider yourself warned.

My parents kept the kids Friday night so we could go to dinner, a movie, and have some incredibly rare grown-up time (I'm out of the house from 7:30am - 7:00pm or later, he's out of the house from 8:30pm - 8:00am, and if I'm home the kids are home.  If I have to work late, we sometimes go days without seeing each other).  We ended up with a funny sort of theme night, accidentally.  Dinner was PF Chang's China Bistro, I had Dan Dan Noodles.  Movie was Kung Fu Panda, and noodles are a recurrent theme.  Then we went home.

You know, when you've been with the same lover for an extended period, you learn his (I say "his" because I have a "his," but this goes both ways) likes and dislikes, favorite places and touches, favorite naughty whispers, etc.  Your body knows his, and you have a conjugal rhythm that you naturally fall into together.  After kids, which means a huge loss of time and energy for fooling around, intimacy does get to feel somewhat scripted because you always want to do the favorite things and have your favorites in return.  Which is not to say that it's bad or boring, it's usually fantastic (after all, you're giving & receivng your fave tricks), but it does lose the spontaneity.  You get to thinking, "Here's where I pull his hair," and, "Okay, he's going to bite my neck now," instead of going with the flow anymore.

So we get home after the movie, and I have mixed feelings.  On one hand, I'm eager because we hadn't had grown-up time for almost four weeks due to various issues at work and with family health.  On the other hand, I'm kind of suffering performance anxiety.  I want to be fresh and exciting, but somehow have to make sure I hit all the right buttons, and I don't want to follow the same old script.

I'm not going into detail, but I didn't have to worry.  I will say that we didn't try anything new or particularly adventuresome, but OH MY!!!  After a decade as lovers, I still had never experienced anything in my life that could hold a candle to what happened that night!  And I don't ever expect to again!  I'm surprised I survived it - I have high blood pressure now - but what a heck of a way to go!  Husband was strutting, albeit a bit stiffly, the next morning, and he had every right.  He was brazen enough to do a little crowing at my mother!

I was pondering the experience Saturday, trying to figure out what was different.  Then, I had an epiphany... I am 34 years old, and a woman.  I have achieved my sexual prime!  Merrowwwwrrr!  I am Cougarlicious!
I put forth this theory to my mate, and he laughed himself silly.  Ah, love.

Broken

Ellie is scheduled for surgery on 5/19/08.  Her Orthopedic Surgeon has to cut the femur in her right leg and turn the bone 90-100 degrees to combat the way her muscles are pulling her bones.  Her bones are growing twisted.  Her right leg is also two centimeters longer than her left leg now.  The surgery will partially correct that, though, because she'll lose about one centimeter to the saw blade.  He's also going to fuse the bones in her left heel into a neutral position because, despite the staples he put in both her heels in August 2006, she is again pronating (walking on the inside, like flat-footed to the nth degree) her left foot (the right one looks perfect).  She'll have to stay in the hospital for a minimum of 3-5 days (I'll be there 24/7, of course).  It will be a long, slow, painful recovery - the doctor is honest with us.

How do you explain to an Autistic child why this has to be?  Will she comprehend why she hurts?  Why Mommy can't make it better?  Why Mommy lets people hurt her?  Why she can't go home?  Why she can't walk anymore?

All I ever seem to do anymore is ask "why" questions.

Nobody ever answers.

I'm going to go cry some more.

Compensation?

Sometimes I wonder if Marty is my compensation, from God, for everything we go through with Ellie.

I realized today that Marty hadn’t gotten "equal billing" with his big sister when it came to the things I write about.  I also realized that I have a tendency to feel guilty about being proud of him, or bragging on him, as much as I do my firstborn, as if acknowledging his accomplishments and special individual uniqueness would somehow lessen my beloved daughter, or would emphasize her differences and, frankly, disabilities.

I love both my children.  I love them with every fiber of my being.  I love them each with a whole heart - it’s a good thing Mommies can have as many hearts as they have children.  I love each of them for the special individual that they are.  I love them just as they are, for their differences and their similarities.  I love Ellie just as she is.  I love Marty just as he is.

I’m going to be honest now, and say those things no parent is ever supposed to say.

The Truth, the Truth with the capital "T", is that Marty is the child I always dreamed of having.  No one dreams of having a child with a disability.  No one dreams that things will go horribly wrong, leaving your beloved child injured, dare I say "crippled," for life.  No.  We dream of golden summers, tickle fights, flying kites, amusement parks, throwing balls, climbing playground equipment, long talks, telling stories, dating, dances, graduations, marriages, grandchildren...

Those dreams were crushed, for me, when Ellie was only 18 months old.  Everything unraveled.  Then, two years later, when Marty was born Neurotypical, I got them back.

I always dreamed of having an "all-boy" boy.  Marty is everything I ever wanted, and so very much more.  He’s brilliant.  He’s physically precocious.  He’s the most beautiful boy ever born.  He has a little dimple in his right cheek that shows when he laughs with joy or grins with mischief.  He’s sweet.  He’s compassionate.  He loves his sister and worships the ground she walks on.  He has two baby dolls of his own, and he’s a wonderful little daddy.  He holds his dolls and rocks them, sings to them, feeds them.  It’s so moving to watch him that it brings tears to my eyes.  He’s gentle with his sister, his babies, our pets, other children... He’s so precious.  I love him so much that it feels as if my heart is swelling inside my ribs, sometimes I think it will swell so much that my chest will burst.

And yes, I love Ellie just as much, in the same way, with the same sensations.  But they are such different children.  And yet, so much alike...

But sometimes I feel guilty for loving Marty so much, as if it was disloyal to Ellie.  I don’t know if it feels disloyal because she’s the firstborn or because of her challenges.  I guess it seems that I ought to love her more than him because she was here first, and/or because she has the harder row to hoe.  But I don’t.  I don’t love either one more than the other, and I’m not just saying that to be "PC" or sound like "Super Mommy."  If I wanted to be either of those things I wouldn’t have started writing this at all.
Sometimes, though, I watch my children, and I do wonder...

Is Marty my reward, from God, for loving Ellie just as she is?  He certainly seems like a reward to me...

Then again, they both do.

How an Autistic Child Says, "That’s MY Brother!"

Today Marty had his butt well and truly tanned.  I'm usually a rather laid-back parent (probably too laid-back), but this was a safety issue and a problem that has been addressed REPEATEDLY over the past two years, pretty much since Marty learned to crawl.

For those of you who don't know Marty, or haven't spent a lot of time with him, he is a stubborn, defiant little boy.  Now, mind you, there is not one drop of meanness in his little body.  He is the sweetest, cuddliest, cutest, most intelligent, compassionate, empathetic, loving and loveable little guy on the face of the earth.  This explains why he is still alive.  Having Marty helps me to understand why some animals eat their young.  We joke about tennis shoes on the Thanksgiving "turkey".  But holy cow, he can try your patience!  Tell him no, tell him no again, tell him no louder, smack his hand, he seems to stop.  Leave the room, he does whatever the heck it was he wanted to do anyway.  Catch him at it, spank his butt, leave the room, he does it again as soon as he thinks you can't see.  Catch him at it and he'll drop his hand, hang his head, and say, "Uh-oh" in the cutest little voice - but it won't stop him from doing it again as soon as your back is turned, or from doing it within moments of having his butt swatted.  Maybe I don't swat hard enough.  I don't like to swat, but good heavens sometimes I don't know what else to do with him!

The only thing that really flips my switches and puts me into "Mama Bear Mode" is severe safety violations.  This particular violation involves the outlet behind my recliner.  When he was barely big enough to crawl, he got back there and figured out he could turn the lights on and off in the living room by wiggling the plug in the wall.  This has always been an absolute, hard-line NO.  This has resulted in scolding, time-outs, hand smacks, and butt swats.  This is too dangerous to play around with.

Today, I was sitting in the recliner, reclined, with Ellie laying on me and tickle-fighting.  The light went out.  The light went on.  I looked up at the switch, which Marty has been able to reach for about a year - no Marty.  I realized he must have crawled under the end table and behind my chair to get to the plug.  In my loudest, meanest voice, I told him NO in no uncertain terms, to leave the plug alone, and that if he touched it again I would spank his butt.

The light went out.

I sat up, sat Ellie gently on the floor, and said, "Excuse me, but I have to spank your brother."  By this time Marty was trying to squirm out from behind my chair and run before I could catch him.  I snared him, scooped him up, bent him over my arm, and gave him five firm smacks on the diapered butt!  I took him behind the chair, stood him next to the plug, pointed at it, said, "NO!  NO!" in my loudest, meanest voice, and swatted his butt once more for good measure, just so we both knew exactly why Mommy was in beast-mode.  I then scooped him up and sat him in my chair.

Ellie, in the meantime, was trying to be invisible.  She crawled on all fours, very slowly and even more silently, out of the living room.  She reminded me of a video I once saw of a three-toed sloth crossing an open area, so quietly and slowly that it didn't seem like something moving at all.  As soon as she reached the dining room she stood up and ran off to her bedroom.

I scooped Marty up and loved on him.  He stopped crying immediately and started playing with his Easter toys.

That's when Ellie started.  First, there was a broken-hearted wail, and I realized I must have scared her when I yelled at her brother.  I started to get up and go to her, but then the pitch of her voice changed.  She wasn't heartbroken, she was TICKED!  She screamed, her angry scream, at the top of her lungs several times.  She stomped and kicked her feet.  I think she even threw things.  Marty squirmed out of my arms and ran to her.

I followed because I didn't want him to catch the brunt of her being angry, just in case.  I got to where I could see into her room, and it was amazing.  The best way I can describe it is that she was curled around him protectively.  Of course, he didn't stay there, because he's 2 years old and Neurotypical.  As soon as he left her room she started to squall again.  I went back to my chair to let her work out the anger.

It was a just a couple of minutes later that she came out to me, snot-nosed, wet-cheeked, and red-eyed.  I wiped her little face, and she climbed up in my lap, curling to all fit (at two inches shy of four feet tall).  I put my arms around her and she just snuggled.  Marty climbed up on the footrest, leaned his back against Ellie, and watched cartoons.  We stayed like that for a long time.

I can't hardly believe I made Ellie angry - especially that angry -  by disciplining Marty.  She's never had that reaction to me disciplining him before - then again, I've never been quite so thorough with him before, either.  It always surprises me when I realize how posessive she is of him, or how much she loves him, because most of the time he seems to be "just sorta there" for her.  It's surprising, touching, and a bit amusing.

There's still a princess in that tower.  She's still in there.  Sometimes she peeks out the windows...

I Hate Botox Day

I hate botox day.  Ellie had 18 shots today.  They chose six sites: groin, hamstrings, calves.  Six sites, three injections per site, 18 total injections.  And they hurt like a sonuvagun.  We've always been honest with her, the doctor and I, since she was two and a half and started these - no one says, "Little stick," or "little sting," or "this won't hurt," or "just a shot," we just tell her when it's almost over and count them down, usually when only three are left.

She's so brave.  I hold her top half while the doctor sticks the bottom half.  She just lays her head on my arm and cries.  She doesn't fight or stuggle, and the doctor says she's the best and bravest he's got.  We always do something fun afterwards, something Ellie enjoys.

Usually we go to the zoo and visit the polar bears - her favorites - or the museum.  I talk to her about what we're going to do while she cries.  Today's appointment was too late to go to the usual, so we went to visit the parakeets, which means we went to her favorite little pet store.  So there I was, talking about how the parakeets would chirp when they saw her, and what pretty colors they were, and how we could buy them some treats to make the visit extra special, while she cried and endured 18 shots.  Afterwards, she stops crying as soon as we put her pants back on.  Then she knows it's really over.  I don't cry during the procedure.  I do that later, when the kids are asleep - like now.

It's not fair.  Mommies are supposed to protect their babies, not hold them while someone else hurts them!  It's so hard.  We do this every 3-4 months.  It really tears me up inside, shreds my heart and soul.

Why?  Why my precious little girl?  Why does she have to go through this?  Why did she have to get hurt?  Why would God do that to a precious, innocent little newborn baby? Why us?  WHY?  Why, d----it!  I want an answer!  I want someone to blame!  I want a target!  I want someone to fix it!  I want to go back in time and save her, to make it never be, to make her whole and healthy and safe.

On August 1, 2002, I had a perfect, precious, healthy little baby girl in my tummy.  She was so active, always stretching and pushing inside me, rolling over, perfect (I know, because Marty felt the same way, active, perfect, Neurotypical).  On August 2, 2002, I had a precious, beautiful baby girl who was born still, because of a doctor who meant well but was too inexperienced, and that doctor revived her while he cried and prayed over her.  On August 2, 2002, two spots, the size of dimes, in my precious baby's brain died, but she lived.  On August 2, 2002, my active, perfect, precious, healthy little baby girl was now an infant with a traumatic, and permanent, brain injury.  Why?  Why will she have to suffer for the rest of her life?  Why Ellie?  Why us?

All the time I hear and read about other people's children who have traumatic brain injuries, but their little brains "re-wire" themselves, they heal, the brain forges new neural pathways.  Why can't Ellie's?  Why can't the doctors explain how that happens?  Why can't they tell me how to encourage her brain to heal?  A special diet, a special exercise, heck - a special surgery.  Why can't they make it better?!  Just in case, JUST in case someone comes up with a way using stem cells, we had Marty's umbilical cord blood stored.  We have Socially Acceptable Stem Cells, just in case.

It isn't fair!  Why does my girl have to suffer?  D----it!  D--n it all!  I hate botox day!  I hate CP!  I hate Autism!  I HATE ALL OF IT!

Having to see her go through this, the pain, the lack of understanding why, the wondering what goes through her head about it, it rips me to pieces inside.  Does she think she's being punished for something?  Does she think Mommy is betraying her?  Does she understand why we do this?  I always tell her it will help her walk and climb so much easier for a long time, months - but I never know how much gets into her little head and sticks.

I wish I could go through it for her.  I wish there was some way I could endure the pain for her, and her reap all the benefits.  If God looked down today and said, "I will heal her if you will take on all her pain, her CP, her Autism," I would shout, "Yes!" and throw open my arms to receive it.  I would take it, and joyfully, to see her whole and healthy.

Why can't it work that way?  Why can't we have magic and miracles?  Or heck, why can't we have the science?

It makes me want to hurt myself, to share in her pain.  I want to cut my skin and watch the blood well out, so I can feel it.  I feel like my soul is full of impotent rage, and pain, and venom, and maybe cutting my skin is the only way to leech it out, to give it an outlet before I explode.  I want to cut and cut and cut, until it's all out of me, all the hurt and rage and poison inside, so I can share in what she went through.  But I can't.  I'm too "healthy" for that, which is a way of saying I'm too old to indulge myself in a burst of Emo.

I hate it.  I hate it all.  I hate it.  Forget being brave.  Forget being the perfect Mommy.  Forget "being thankful for what you have."  Forget all of it.  THIS STINKS!  This stinks like rotten broccoli!  MY CHILD SHOULD NOT BE HURT!!!  Not my sweet baby.  Not my precious little girl.  NOT HER!!!

D--N IT ALL!  D--N IT ALL TO H--L!  I HATE IT!!!

Pathos

While giving the kids their baths, I realized just how sad and pathetic it was that my life is such that my 5.5 year old daughter opening a drawer was front page news.  On the one hand, it was a huge thing.  On the other hand, my preschooler opened a drawer.  How sad is that?  How sad is it that, to me, that was "cause celebre'"?  This is not the cruise I signed up for.

But I'm still proud of her.

Exciting First!

We've had a very exciting first!  Ellie and Marty just got home.  Ellie came in, went to her room, sat down on her little chair, pulled open her nightstand drawer, examined the chewie toys available, took one out, and closed the drawer!

She has never done that before!  I've been putting chewies in that drawer for two years, and she has never opened it on her own, let alone chosen a chewie and closed it!  It was so cool!

I'm so proud!

Rage Rollercoaster

So, last night I read this:

The U.S. Department of Health and Human Services, the federal agency that oversees the U.S. Food and Drug Administration (FDA) and the U.S. Centers for Disease Control and Prevention (CDC), recently conceded the first vaccine-autism case...one of the first three cases chosen that alleged Thimerosal in childhood vaccines significantly contributed to a child developing autism.

This concession shows the dishonesty of the continual media spin coming from public health officials and others who maintain there is no evidence that Thimerosal, or any other part of any vaccine, has ever caused autism or, for that matter, has harmed anyone in any way.

The facts are that the Vaccine Compensation Act has already compensated over 2,000 individuals who proved that they were harmed by vaccines, resulting in settlements of nearly two billion dollars.
Additionally, hundreds of peer-reviewed scientific/medical articles from some the world's best universities have long implicated Thimerosal in vaccines as a causal factor in neurodevelopmental disorders including autism.  Furthermore, in 2003, the U.S. House of Representatives' Government Reform Committee, after a 3.5- year investigation, concluded that Thimerosal caused the autism epidemic and that the FDA and health authorities were guilty of "institutional malfeasance" in covering it up.

After reading that, I was numb.  My first thought was, "Did I hurt my Ellie by trying to be a good mommy?"  After about 30 minutes of fighting off tears and feeling like the worst mother ever, I started to get angry.  Within the hour I was in a fine fettle.  I was looking for an attorney, because if THEY did this to my little girl, and THEY knew it, I was going to own them!!!  They were going to pay for every second of my baby's life, of my three years in therapy, of every disharmonious note in my marriage that has centered around this stress, for every physical/occupational/speech therapy session my Ellie has had to go through and will have to go through.  I was going to make them pay, and FIX IT!  If they caused it, and now admit it, then they should turn around and find the cure for it!  I wanted to hunt them down and inject them full of mercury, so they would know how it felt!

By this morning, it was a royal rage.  I was a lioness with a wounded cub, and my apex predator eyes fixed on the jackal who harmed her.  I had a target.  I had someone to blame.  I had someone I could aim my heretofore impotent rage at.

As soon as her pediatrician's office opened, I called them and requested her shot records from her previous doctor, especially the ones before she turned 2 years old, and I told the nurse why.  She looked up Ellie's records right away and called me back.

Ellie was never given Thimerosol.  She never had any vaccine with any type of mercury in it.  All of her vaccinations have been done with "preservative-free" vaccines.

I slowly deflated.  On the one hand, this is good, because it means that negligence did not cause her autism.  On the other hand, I no longer had an explanation.  It was good to have a night when there was someone I could blame, and a real wake-up call as to how much venom is in my soul over my baby girl's fate.

I'm back to where I was, with no one to shake my fist at except God, no one to scream "Why?" at except the unyielding sky.  No explanations, except:
That's Just The Way It Is

Animal Rescuers!

I forgot to mention the temporary addition to our family - "Butch," the Eastern Tiger Salamander.  One of the boys at the facility rescued him from some other boys who wanted to squish him.  That boy took the salamander to my former boss, who remember that we rescued an Indiana Green Frog in late fall 2006.  Butch came home with me for the winter.

Marty thinks Butch is pretty cool, but can't quite bring himself to touch the little amphibian.

Ellie, on the other hand, is apparently an amphibiphile (new word I made up  meaning "lover of amphibians").  She used to love to touch Frog, but Frog was hard to hold (considering that she could hop several times her own body length in one bound).  Butch, on the other hand, moves pretty slowly out of water.

We don't normally handle our rescues because they will be returned to the wild, but I made an exception last week.  Marty was throwing his first dyed-in-the-wool two-year-old tantrum.  I tried to interrupt him by getting Butch out.  Marty paused, looked at Butch, chortled, then remembered he was having a fit and went back to squalling.  I took Butch to show Ellie before putting him back in his tank.

Ellie took one look at Butch in my hands, then reached down and, much to my surprise, plucked him out!  She took him from my hands three times, and said spontaneously, "Hold him?  Hold him?" as she did (I picked him up again whenever he escaped).  She was fascinated by the little critter!  We can't get the kid to pet her cat, but she's enamored of the salamander  Maybe it's the texture of his skin, or that he's small - I don't know.  Who knows what goes on in the mind of a preschooler.

So, here we are, talking about getting her a captive-born salamander if her fascination with Butch continues.  We can't keep Butch, of course - he's wild-born, and to keep him in captivity would be cruel.  I'm grateful for the opportunity to teach my kids about wildlife, though, and to make these discoveries about them as well.

Obi's First Mouse!

Obi got her first mouse!!!    Unfortunately, it was in our closet...   I was putting clothes away when Obi darted into the closet.  A moment later, there was a burst of squeaking from behind the sliding door.  I called Husband in, we both said a couple of queasy "Good Kitty!s", and left the room.  I went back a few minutes later and the squeaking had been replaced by purring.  All I could think of was, "Please, God, don't let her bring me a head!"  A few minutes after that, Obi came out of the closet, licking her chops and strutting.  We praised her to the skies, and I sent Husband to look for remains.  He didn't find any, so either a) she ate it all, b) it got away, or c) he missed it and we'll smell it tomorrow.  Either way, our baby kitten is now a cat!  (ie "our girl is a woman grown")

Children & Musical Beds

Tonight has been amusing, and sad, when it came to the kids' bedtime.

First, Ellie went into Marty's room to watch Winne the Pooh instead of watching Big Comfy Couch, as she requested, on her own TV.

Then, Marty demanded to be snuggled and rocked to sleep, per usual.  While rocking Marty in the living room, he suddenly got his second wind and squirmed down to run through the house.  After a few minutes, I realized that it was awfully quiet back there where the kids' rooms are, and I went to see what was going on.
Ellie had managed to curl up in Marty's toddler bed, which looks like a yellow VW Bug, roof and all, and had gone to sleep.  Marty was in Ellie's twin bed with the covers pulled up to his chin!  Fortunately, he was still awake.

Husband got Marty out of his sister's bed, and I extracted the soundly sleeping 5.5 year old from her baby brother's bed.  I put Ellie in her own bed and tucked her in - still sound asleep.

Marty had a wet diaper, so I took him into his room to change him.  He said several times, "bed, bed," and "Pooh!  Pooh!"  I decided to be cute and tucked him into his bed, not expecting him to stay there (he never has before), and started Winne-the-Pooh over.

I went back to the living room and sat in the chair, waiting for him to come running in.  He hadn't shown up by the next commercial break, so I went back to have a looksee.  He was asleep!  He went to sleep in his own bed, by himself, for the first time ever!

On the one hand, I'm proud that he's such a big boy.  On the other hand, I'm sad - Ellie didn't start going to sleep by herself until she was 3.5 years old.  I missed rocking my little man tonight.  My babies are growing up so fast!  But that's why I've never tried to "sleep train" either of them, because I knew that one day they wouldn't want to be rocked any more, and I would never have that joy again.  My heart aches, both with pride and longing.

Where Have I Been?

Where have I been the past three years?  Tonight, lying in Ellie's bed while she "wooled" (ie loved all over) me, I was struck by a sudden sensation of vertigo.  I remember clearly her first two years, my sweet baby growing into a happy and loving toddler.  Now, here, cuddling and wrestling with me, is a young girl.  The time between her first two years and here, tonight, is a blur.  Mostly a dark blur.  Have I been that depressed, for that long?  Am I only now getting my feet back under me and my head in order?  Where did the past three years go?  I remember bits and snatches if I focus and try, but the last three years are not the cohesive, flowing memory of her first two years.

I feel like Rip Van Winkle, waking up in a world that is both familiar and strange.  It's the same feeling that you get when you're driving down a road you've driven a hundred times before and you suddenly notice something that your eyes have always glided past - a barn set back in the middle of a field, the name of a little store, the color and detail of a house that never before caught your attention - and, just as suddenly, a tendril of fear.  You don't know where you are on this road you've driven over and over.  You've been startled out of your driving reverie.  This thing that you've unexpectedly noticed is not tied in your mind to any other landmark on your previously familiar journey.  You are lost, until you find your next usually noticed point - the stoplight, the gas station, the big blue house on the corner - and relief washes over you.  Now you know where you are.

But I don't know where I am, or where this road will lead.  I've been on autopilot, and tonight I suddenly realized that I've taken too much for granted.  I haven't looked around.  I haven't made landmarks.  I've been lost.

Now I know I was lost, though, which is an improvement.