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