November 22, 2010

Why I Run

I could say that the past two years of my life have been a beatdown.

And I wouldn't be exaggerating.

My trust, my hope, my heart ....

have taken a beating.

How do you cope with life when everything is not how it should be?

When there is no foundation beneath your feet.

And two little children wake up every morning expecting to be loved, and cared for and comforted.

It ain't easy.

You learn a lot of lessons.

Many of which you would have been better off never needing to know.

But life ain't easy.

So you either cope, or you fail.

I don't know how other people do it--people who have found themselves taking care of children, much less a child with special needs, on their own.

I never expected to be in the position I found myself in last year, and I still sometimes wonder how it happened.

I also still struggle with how to deal with the challenges placed before me. But I do know that one of the biggest reasons I haven't jumped off a cliff is because ....

I ran.

And ran and ran and ran.

What do you know?

This simple act of taking one step after another, pushing myself against my previous time, forcing myself to go one extra mile, telling myself that if my son could face the world with all of his challenges, then I could surely keep my feet shuffling along the pavement ....

It saved me.

I was never an athlete in my younger days.

I dodged balls thrown in my direction.

I would have liked to skip junior high PE in its entirety.

I always felt like I couldn't do anything even remotely athletic. I didn't even want other kids to see me run, because I thought I looked so incredibly awkward.

So what a surprise ...

I am running a 10K on Thanksgiving morning.

And I am so excited.

I have completed one half-marathon and three 5Ks in the past year.

And my times were nothing to sneeze at.

I can do this. I can actually run.

I love what running has done for me.

I love the tension that flows through my body when I wait behind the starting line.

I love the sense of accomplishment when I cross the finish line.

I love the mental challenge that comes with each race, the feeling that nothing can stop me but myself, that nothing can stand in my way as long as I decide to keep moving my feet.

Nothing .... can ..... stop ..... me.

It is a glorious feeling.

It makes me strong.

And I can use all the strength I can get.

November 18, 2010

Oh, mirror in the sky,
What is love?
Can the child within my heart rise above?
Can I sail thru the changing ocean tides?
Can I handle the seasons of my life?

Well, I've been afraid of changing
'Cause I've built my life around you
But time makes you bolder
Children get older
And I'm getting older, too
-- Stevie Nicks, Landslide

Sometimes you don't have any choice but to change.
Because the world as you know it disappears ....
What you envisioned as your life is no more.

And, yet, your responsibilities remain the same.
Indeed, they expand.

You wonder if you can do it.
But you have no choice...

And you change.

In ways big and small.

Sometimes you cry.
You mourn the loss of everything you believed to be real.
And the sobs pour through you.

In ways big and small.

Eventually, you start to recognize things that will keep your from disappearing.
You accept them.
You embrace them.

But you still worry, and you still mourn.

In ways big and small.

November 17, 2010

Joyful Curls

My daughter wants her hair curled.

It is not national news.

Reporters aren't beating down my door for a sound-bite.

But it is one stinkin' big deal to me.

My girl, my don't-wash-or-brush-or-fix-my-hair-daughter, WANTS HER HAIR CURLED.

What happened?

She climbed into her car-seat Monday after school and started talking about her role in the school Christmas pageant next month.

And she said the words that nearly caused me to drive off the road:

Mommy, will you curl my hair for the Christmas show?

Ah, heck yes!!!!!

The next day was a repeat performance.

Mommy, will you curl my hair for the Christmas show?

Will you curl it when we get home?

I am not sure what brought all of this on.

But I found that rarely-used curling iron and curled her hair.


I am loving this.

And I ain't even THAT girly of a girl.

Olivia, thank you, thank you, thank you.

For these moments when I can just be a mother paiting her girl's finger-nails.

I will curl your hair every day if you want me to.

And I will inwardly cringe some day when you decide you are old enough to do it yourself.

Thank you, dear daughter, for these moments of pure joy.

November 16, 2010

I would do just about anything to "fix" my son.
Even though I love him just the way he is.

He is becoming more and more frustrated at his inability to effectively communicate, as his behavior clearly indicates.

It is frustrating for me, too.

But there are things that are even more frustrating in my life.

Yep, I could tell you about things that are even more frustrating than a seven-year-old, non-verbal son who requires constant attention, who likes to push my buttons and who runs from me in public parks.

I have a list, actually, and it is fairly impressive--if by "impressive" you mean difficult enough to put me in an asylum.

There are no answers to my problems these days.

No way to know what is going to happen.

We can all say that, I suppose.

I THINK I have accepted that I am only ONE person, that there is only so much I can do.

I tell myself that I have, in fact, accepted that I can't "fix" anyone. I haven't even done such a good job of "fixing" myself, although I am trying.

I am running.
I am dancing.
I am writing.

But have I fully accepted that there is only so much I can do?

No, I haven't.

Not yet.

November 14, 2010

Seeking an Expert

Is there really an "expert" on autism.

I am skeptical.

How does anyone explain the mysterious? How can anyone look into the minds of these beautiful children and know ....

why they want to do the things they do?

why they NEED to do the things they do?

Why does my son feel the need to touch the world like he does?

Why does he put his hand over his ears at a football game while simultaneously smiling at the sound of the cheering crowd? He is not distressed. But something makes him want to tune out some of the sound.

Why does he squint his eyes when overwhelmed or nervous?

Why is he so fascinated by the repetitive motion of the little things? Why does he need to drop to the ground and watch the mulch drop from his fingertips when he could be climbing the playground equipment?

Why does he look away from me when he must know how desperately I want him to look ... at .... me.

Why? Why? Why?

Why does he open up his mouth and make a sound so obviously indicating a desire to reach me, to tell me ....


Why can't he put his lips together and produce the sounds he so desperately wants to say?

I can sit here night after night, and type away at this computer if I want to.

I can type for hours, well after the Cheezits are gone, and the possum who eats all the cat food has come and gone from my garage.

I can talk for hours to any friend kind enough to listen.

But my son can't say a blasted thing.

And nobody can tell me why.

Is there an expert on autism?

Well, there are plenty of people who can describe the symptoms. There are people who can diagnose your child while sending you on your way with all the bedside manner of a sloth.

But there is no expert here in my living room. There was no expert telling me how to keep my family together. There was no expert telling me how to maintain my sanity while processing all of this confusion and hurt.

Maybe some day ....

the experts actually will know something.

One Hour at a Time

So God just help me out while I fight through this grievin’ process
Tryna process this loss is makin’ me nauseous
But this depression ain’t takin me hostage
I’ve been patiently watchin’ this game, pacin’ these hallways
You had faith in me always
-- Eminem, You're Never Over

I have had some really dark days due to this disorder known as autism.

They began to hit me the hardest just before my son turned three.

My shoulders were the best outward illustration of the pain I was feeling on the inside.

I have never been tattooed, but back in the day, my shoulders were like a rainbow of colors: black, blue and purple.

They were my son's favorite biting target.
And they showed it.
I could cover up the bruises on my shoulders with clothes. People rarely saw them. And I tried, too, to cover up the immense feelings of sadness I felt on the inside. But that wasn't as easy ...

Eventually, I began to feel it -- the overwhelming sense that something was going to give.

I was starting to lose my mind, and I knew it.

I knew it because I began to think things that were completely irrational.

I began to wonder if perhaps God had wanted me to never parent.

I began to wonder if my son was challenged because I was a bad person.

I began to wonder if things were so hopeless that I would be better off just .... giving .... up.

Thank God, or good fortune, or the moral direction I received from my parents, or all of the above, but ..... somehow, I maintained just enough sanity to question the rationality of my thoughts.

And I started taking steps, baby steps though they were, to reverse my thoughts.

It was a long process.
And it isn't as if you are ever just done. When you have a child with such a severe disability that he most likely will always need your help -- just to get by -- well, you can't ever live like a "typical" person. Your mental health has to take on a priority the likes of which many people never will be able to understand. You have to remind yourself to be calm, to live one day -- if not one hour -- at a time. And you have to come to realize that happiness is, to a very large extent, a choice.

It is a choice that requires work.

I constantly remind myself of all the things in this life that make me happy.

If it weren't for my son's disability, I would not take nearly as much time to reflect on these little joys.

Don't get me wrong--I would much rather my son go through life without obstacles. But I know that I would not appreciate my daughter's remarkable gifts as much as I do, if I did not know firsthand what a miracle they are. I would not appreciate the amazing friendship I have found in one of the most beautiful people to walk this Earth, if I didn't realize just how much I need it.

I still have my dark moments.
They have been much darker than I ever thought they would be because I suffered a loss that, to me, was even greater than the loss of my dreams for my son.

Talk about starting over....

But the one thing I know about life is that it doesn't change simply because you question your ability to handle it.

And when there are two children depending on you, you simply cannot give up.

November 10, 2010

Accepting the Unimaginable

Accepting autism.

What does it mean?

My son turned seven in August.

I first started worrying about autism when he was just one-year-old.

So I have been confronting autism for well over six years.

But have I truly accepted autism?

In some ways I have.

I know it is here.

It is here in my life every day.

Because my son has autism.

Put it on a tee-shirt. I will wear it.

Look at us while I chase him through a department store.

Gawk, if you are so ignorant and so inclined, while he stims with a plastic fork in Chic-fil-A.

This is our life. This is my family. This is what autism looks like.

If you don't like it, I really don't give a crap.

I know there is nothing I did to cause my son's autism.

THAT, in itself, must be a part of acceptance.

Because there was a time in my life when I wondered if I was to blame for my son's obstacles.

I also know there isn't anything I can do to change my son's autism.

That, too, must be a part of acceptance.

But I still have a responsibility to help him achieve what he is capable of achieving... whatever that is.

And THAT is probably one of the most difficult aspects of accepting, and dealing with, autism.

How do I best help my child?

And how do I maintain a sense of self?

HOW can I balance the roles of (1) mother of a seven-year-old boy, (2) caretaker to this child who needs constant care, (3) teacher to this child who needs as much teaching as he can get during the course of each day, and (4) mother to the "other" child -- the incredibly inquisitive, five-year-old daughter who so frequently stands on the side-lines while her brother gets the majority of my attention????

Wasn't I once someone else???? Oh, yes, I once was a wife. I once was a young woman full of love and dreams. I once was a girl who had no idea what life had in store. I even went to college; I even had an advanced degree. I thought I was going to BE SOMEBODY.....

Yes, there was once a time in my life when I had an identity that had NOTHING to do with autism.

Times change.

What does it mean to accept autism?

Hell if I know.

Maybe someday I will figure it out.

Here's hoping .....

November 8, 2010

Your Baby Most Likely has a Lymphatic Malformation: Say What???

I have mentioned before that my second pregnancy was, to put it mildly, worrisome.

I discovered I was pregnant with my darling daughter just about the exact moment I started slipping into a dark hole of worry about my son.

Autism was starting to dominate my thoughts.

And then ... I find myself sitting in a boatload of worries for a baby growing inside me.

It was May 2005. I was getting an ultrasound, my husband at my side, when my wonderful OB says:

Um, I don't mean to stress you guys out, but there is something on the baby's face or neck.

Um, WHAT??????

She wanted us to go to a "fetal development specialist."


My head was spinning as I listened to her. I tried to focus on the "positive." Whatever this "thing" was didn't appear to be very big. It might be something they could "take care of" right after she was born. Something they could "drain."

But when we left the appointment, I saw the fear in my husband's eyes.

He is a physician.

He was panicked.

Shit, shit, shit.

We had to wait for our appointment with the fetal development specialist (AKA a "high risk" OB).

We both spent hours on the computer, pouring over articles about facial deformities.

Unfortunately, we spent those hours alone. He was on the computer by himself. I was on the computer by myself.

We never really came together in our fears.

We were walking through a no-man's land of absolute dread.

And, as we walked, we looked at our beautiful son and wondered:

Why in the heck is he not developing like he should?
Why does he have all of these weird little quirks and behaviors?
Why doesn't he wave?
Why doesn't he point?
Why doesn't he imitate?
Why doesn't he TALK?

And, again, for the most part, we worried, and anguished, alone.

We had multiple appointments with two different high-risk OBs. It was like a nightmare.

The high-risk OB who would eventually deliver our daughter told us that he believed she had a lymphatic malformation on the lower part of the left side of her face. Both my husband and I already had decided, based on all of our reading, that a lymphatic malformation was the most likely answer, so we wern't surprised by the news.

As explained on the Children's Hospital of Boston website:

LM is a sponge-like collection of abnormal channels and cystic spaces that contain clear fluid. ... Lymphatic channels sprout from veins in early embryonic life. Protein-rich fluid normally filters out of blood-filled capillaries into tissues throughout the body. The lymphatic system serves to transport this fluid back into the venous system. ... Although the precise cause is unknown, LMs are believed to be caused by an error in the formation of these tiny, thin-walled sacs and tubes in the embryonic period. No known food, medication, or activity during pregnancy can cause an LM.

An error in the formation of .....
Bring on the guilt.
Bring on the depression.
Are you trying to tell me something God?
Did you never want me to have children in the first place?
I got to the point where I was so sure bad news was waiting around every corner that I didn't even want to go to the mailbox.

OK, so back to reality ... The definition noted above is a fancy way of saying that sometimes lymphatic channels don't form correctly, and the result is like a traffic jam of fluid. LMs can occur anywhere in the body, but they frequently occur in the face and neck region. They can be big, medium, or small--sometimes so tiny that you don't even notice, sometimes so large that they wrap around a child's entire face. They sometimes block a baby's airway and cause profound disfigurement. If large enough, LMs can basically suffocate the baby in utero or be deadly upon birth.

As I waited for my baby to be born, I spent hours and hours reading about LMs. I joined an on-line LM support group, and while my son was at preschool--three mornings each week--I read the postings of parents whose children were severely affected by lymphatic malformations.

I went to see the doctor once every two weeks and had an ultrasound at every appointment. He wanted to see if the LM was growing. He was cautious, but encouraging.

The lymphatic malformation did not appear to be growing.

Everything else looked good. The baby's head measured perfectly. Heart looked great. Lungs were doing what they were supposed to do. Kidneys looked fine.

And, at one appointment, we learned something that was a HUGE bit of good news:

The baby was sticking out its (I didn't want to know gender, even after ALL those ultrasounds!) tongue. Sticking it out and in, out and in.

What a relief -- because I knew that many LMs that obstruct the airway keep a child from being able to withdraw his/her tongue. It just hangs outside the mouth because the LM is such an obstruction that there is nowhere else for the tongue to go.

So, that bit of news definitely was welcome. It meant our baby's airway most likely was not obstructed.

I tried so hard to focus on all of the good stuff, even though I also heard the following words from the doctor:

You need to deliver the baby in a hospital with a level-four NICU. I want to have the NICU team standing by in case the baby needs to be intubated.

I have had more than my fair-share of dealings with the five stages of grief.
As I read about children with large LMs -- about their trachs and G-tubes, about their multiple surgeries and severe disfigurement, I hit that bargaining stage pretty damn hard.

OK, God, if you would just let this baby be born breathing without any problems -- just able to breath and swallow -- I will stop worrying so much about Daniel and appreciate him for who he is.

Well, my spiritual life ain't what it should be, and as I've noted, I think God mostly listens and doesn't intervene. But ...

If he was listening, and if he did intervene on my daughter's behalf, he did one heck of a job.

She is beautiful.
And amazing.
Smart and funny and, oh, so filled with energy.
She is a singing, dancing delight, even though she sometimes drives me crazy with all of the drama.

Her LM definitely was noticeable at birth, but it did not cause her any problems.

You can see what it looked like in the picture of her the day she went home from the hospital.

Her LM has not caused her any problems in her five-plus years. It still might someday--they sometimes swell during illness or periods of great hormonal change, like pregnancy--but the fact that it hasn't swollen yet is a great sign. It turns dark when she has the slightest bit of injury or trauma to that part of her face--like when she collided with another little girl in her dance class a few weeks ago. But the color goes away in time.

Most of the time, nobody would even know it is there.

She is absolutely beautiful.

But going back to that bargain with God .... I definitely have not held up my end of the deal.

I want so much more for my son.
I HATE how he is so frustrated by his inability to speak.
I want him to be able to write a letter to me some day, even if it is just a short note with simple sentences.
I want to hear him say "I love you."

This life of his is not fair, and by extension, his family endures unfairness as well.

And, yep, God, I ain't happy about it.
I suppose that as my frustration grows, I should be on my knees that much more often. Especially when I have days like I did yesterday, when my son is pushing all my buttons and I find my frustration level growing in volumes. Sigh ....

It is not as if God promised anything to anyone, in terms of this life here on Earth.

And I know there are times when He must be so disappointed in me--at my impatience, at my self-centered woes of unfairness.

But I hope He also knows that, at the end of the day, I realize that being my son's mother has made me a better and stronger person ....

even though I still have a very long way to go.

November 5, 2010

Autism brings on its share of headaches, heartaches, and out-and-out stress.

No doubt.

BUT there are "autistic traits" that definitely would improve the world if only the "normal" people would pay attention.

As I have noted here before, when my son likes you, he simply likes you -- unconditionally.
Whether you are fat,
whether you are bald,
whether your clothes are a mess,
and your life is even messier ...

It doesn't matter.

My son doesn't judge as others do.

What matters to him, is really quite simple:

Is this person nice to me?

What a concept.

And so perhaps the most troubling thing to me, in this life of mine that has been so troublesome as of late, is that there are people in this world who, for lack of a better description, are totally the opposite.

It would never occur to my son to do anything to hurt someone.
Because WHY would he ever want anyone to hurt?

And, yet, there are people who take pleasure in others pain.

They can contribute to the worst pain a person has ever known and rub that person's face in it.


I'll take my son's problems, numerous and challenging though they are, any day before I'd want to deal with problems, and people, like that.

November 1, 2010

So Happy to be Mistaken

I had a big scare one morning last week as I was driving my kids to school.

I started down the road that borders my neighborhood -- it runs directly behind my backyard. It is a very busy road during the morning.

I approached the part of the road that bordered my own backyard and saw a furry blob.

A black, grey and white furry blob.

"No, no, no," I whispered. "Oh no, oh no, oh no."

Not Lovey.

I slowed down and drove past the dead cat.

It looked just like Lovey.

I turned down a side street and parked the car. I jogged over, stood smack in the middle of the road and gazed down. (Yes, I could see my car the entire time. Please, nobody call DCFS. I have enough problems.)

The collar wasn't there, but Lovey sometimes gets his collar snagged on bushes and ripped off. I thought there might be a bit more white around the neck than I remembered. BUT the rest of the cat looked EXACTLY like Lovey. And he was crumpled up right there behind my house -- behind the fence I see Lovey walk along and climb over almost daily.

Oh, boo, hoo, hoo.

I moved the cat from the middle of the road to the grass.

I finished taking my kids to school.

I called my dad,

Boo, hoo, hoo.

I texted my best friend.

Boo, hoo, hoo.

I thought to myself: Seriously, God, with all of this crap in my life? With all of this pain and sadness? And now there is no Lovey?????

I know, I know. No reason to question God. I have never believed he causes hardship. I am a believer in an omniscient, keeping-tabs-but-not-interfering-God. It is the only way I can make sense of the world (although I still pray, so go figure).

I went home to get something to use to wrap up the body.

And who is there, basking in the sun in the middle of my driveway????

Dear, sweet Lovey.

OK, so I know I haven't been sleeping much. I haven't eaten much. My mind has been blown away by the details surrounding the crumbling of my marriage.


I dropped to the ground and loved on Lovey.

And I drove back to the grassy shoulder.

There was that poor little cat.

I placed him on a towel and gently wrapped him up.

There was no way I could just leave him.

Add it to the list of things I never thought I was capable of doing before life slammed me upside the head with a you-really-don't-have-much-of-a-choice-fastball.

I can remove feline corpses from the side of the road.

The nameless kitty is now buried in my yard.

And I sure am happy every time I see Lovey.