July 29, 2010

I am trying to remember what my therapist recently said about anger.

Damn it, therapy ain't cheap, and it certainly is a time commitment. I need to remember the things she says that strike a chord.

It was something about anger being a choice ... yada, yada, yada .... OK, so I definitely should be taking notes. But perhaps the gist of it was that even though we all are entitled to our feelings, and we certainly are entitled to feelings of anger when we have reason to be ticked off, the way we handle our anger is all about choices.

My anger has gotten me in some trouble this past year.

I had some mighty fine reasons to be angry.

Things were crumbling before my eyes.

I felt alone, and I felt very, very scared.

I wanted to fix things; I wanted to repair. But I felt as if my hands were bound and someone kept hiding all the tools ... or even throwing the nails back at me.

And Lord knows I sometimes swung the hammer a bit hard.

I looked for help from sources who turned out to be incapable of providing it.

I was shocked to learn that sometimes people can see someone at their weakest moments, at their most fearful ... and jump at the chance to make it worse.

Sometimes a wagging finger hurts much worse than a balled-up fist.

And what do you do with anger when, at some point -- some horrible moment that will stay with you for the rest of your life -- things seems completely irreparable?

Oh, holy heck, I am still working on that.

I am getting better at it. But I have a ways to go.

Most of all, I wish, with all my heart, that I knew how to heal the hurt that lies below the surface -- that lies below the anger.

I wish I could do that for myself ....

And for others, too.

July 24, 2010

May Peace Be With Us

I am not sure how to completely make peace with autism.

I am not the same mom I was four years ago, back in the days when I would lie next to my son in his bed and pray to God to just help him go to sleep. Why did it take him so stinkin' long to fall asleep, I would wonder. After everything we did during a day -- school, therapy, swings, slides, wagon rides through the neighborhood, etc., etc. -- why in the heck was he so wired at night? It sure as heck wasn't from too much napping. My son stopped napping WELL before his first birthday. So, why, why, why would I be praying at 10 ... and 10:30 ... and 11 ... and frequently much later ... for him to fall asleep?

Some nights I was almost frantic. My baby daughter would be waking up at any moment, needing to be fed. She woke up several times a night for the entire first year of her life.

I was so tired.

If I were to get out of his bed and leave him, I would later find my son atop the furniture or -- dare I mention it -- in the middle of a poop disaster.

When he finally would fall asleep, I would look at his gorgeous face, at the extra-long lashes, at his thick, dark hair .... and I would let loose with a sob that rose up from the depths of my soul.

And I sobbed and I sobbed ... all alone. Alone, even though two children and a husband were sleeping under the same roof.

I internalized my grief.

What had I done??? What had I done to make God so angry at me that he would allow my child to have such a disability. I was too harsh, too prideful, too quick to judge. I should have given more of myself to others. You name it, I thought it ... all the reasons why it was my fault that my son had so many challenges.

Yep, I was full-out crazy.

No, I am not the same mother I was back then ... when I wondered if my son would always bite me, if he would ever be potty-trained, if I would be taking care of him until the day I died.

I am a different person than that miserable, mopey woman.

I still sometimes wonder if I will be taking care of him until the day I die. But I don't think the words with the same level of despair, even though they still weigh heavily on my heart.

I suppose I have traveled through those five stages of grief, although my path was crooked and winding, and I certainly have not unpacked my bags.

I spent plenty of time in denial. Frozen. Paralyzed.

When I looked at my gorgeous baby, I saw perfection. He smiled and laughed on-time, and his days were filled with happiness. I knew exactly what to do to get that belly-laugh out of him. He crawled and explored. Walked at 13-months and could have much sooner if he had not been afraid to let go of the furniture. He would run to me, arms outstretched, when we ventured out for a neighborhood stroll and he heard me holler his name.

I remember the mornings when I would lift him out of his crib, in the days when we finally made it past the horrible all-night colic, and, oh, how his eyes would light up at the sight of me. His little arms and legs would squirm with excitement ... all because he saw ME. It was the best feeling I had ever known.

To even THINK about the "A-word" in relation to my child felt, for such a long time, as if I were insulting him. He was too wonderful. No, it was not possible.

But something was wrong with my child. He didn't point. He didn't nod. He didn't imitate at all, a sign I know now was a giveaway. Oh, yeah, and he didn't talk.

When we actually got the diagnosis, it was not a surprise. But nor was it any kind of help.

I will never forget the developmental pediatrician -- an "expert" in the field of autism -- who spent some time questioning us and then maybe 5 minutes trying to interact with Daniel.

It was all the time she needed.

Your child meets the diagnostic criteria for autism. Good luck to you because you are going to need it. And now it is time for you to get out of my clinic, because there are many children waiting to see me, and goodness knows I was at least an hour late in seeing you guys.

OK, so those weren't her exact words. But they don't stray too far from the script -- or the feeling she gave me. Gotta love a good bedside manner.

And you can forget that "Welcome to Holland" poem they handed out. Screw Holland, I thought. Take your sentimental BS and shove it. I just want to know WHAT TO DO!!!

But nobody was going to tell me that. Because the one thing most of the white coats won't tell you is that, for the most part, when it comes to autism, they don't have a clue.

I have bounced around the stages of grief and, thankfully, I have found a way to the "other side." I can laugh at a friend's joke. I can get out on a dance floor with some wonderful friends. I can survive what has been the absolute worst year of my life, a year when my very foundation was split, cracked, and pulled from under my feet.

But peace is a relative thing, you might say.

Why am I writing all of this tonight? I am not entirely sure. But it has something to do with a woman who was arrested last week. Her home is probably about 15 minutes from my own.

I know nothing about her other than what has been reported on the news.

She is -- or, rather, was -- an autism mother.

She committed the unthinkable.

I can't even bring myself to link to the stories.

Words fail me.

Many people I know have commented about it -- about the horrible thing she did. Some of them have children on the spectrum; some of them do not. I can't help but notice, generally speaking, that the two groups have very different tones.

Even though my child is on the spectrum -- even though he is severely affected by autism -- I would NEVER suggest that I know what her days were like before she committed this horrible crime, this unimaginable sin. It appears she and her husband did not have many resources -- i.e. "money" -- and any parent of a child on the spectrum can tell you just how essential money is when you are trying to find qualified help for young children with autism. Especially in the South, especially in Texas. Did she have any help? Did she EVER get a break? Her children were young. (It is not clear whether both of them had autism, or just the older child. But either way, did she feel like no matter how hard she tried, she was never going to be able to give them both what they needed?) Were they ever even in school or was she with them 24 hours a day, seven days a week? Did cultural differences make her feel uncomfortable about reaching out to others?

Did she feel isolated? Did she feel entirely alone? Did the stress and the exhaustion and the hopelessness take away every last bit of her sanity?

I am so sad to know that this mother was so desperate, so depressed, so lonely ... and that she lived in a city bordering my own.

It is nauseating.

Yes, I have made some peace with autism.

But I could do so much better.

It is a daily struggle to be all that my child needs. I always feel as if I should do more for him.

It is a CHOICE to find happiness, in whatever ways I can, and it would be much more difficult to make that choice if it weren't for the support of so many mothers who are there to listen and share. Mothers who can understand because they know what it means to REALLY worry about a child.

May God, in whatever form He exists, bless the little souls of those two children. And may He guide us all to the ones we need in our darkest times -- to the people who will keep us from drifting deeper into isolated waters, to the people who will help carry the weight of our sorrows when our backs are close to breaking.

July 19, 2010

To the Gals on the Dance Floor

When does an old wound really start to heal -- the kind of wound that is open, deep, and wrapped around the heart?

I am not sure.

BUT I know what helps to heal the human spirit.

Five BEAUTIFUL friends, all of them mothers, all of them amazingly strong and smart, who worry about your pain and your stress, and who manage to make you laugh in the worst of times.

Women who talk, and laugh, and share the stories of their lives, before hitting the dance floor and letting loose.

And, what do you know??? I am discovering that letting down my hair and staying out well past the hours I'd normally crawl into bed also does a heck of a lot to uplift my weary soul.

Thanks, ladies, for a VERY fun night.

Thanks for your friendship.

I don't know how I would have gotten through the past year without you.

July 13, 2010

Happy Birthday, Dear Mama

I am now officially closer to 40 than 30.


Monday was the big 35.

What a hell of a year.

Last year my birthday was not so great. And, then, less than two weeks later, I found myself staring at the back of my spouse's head as he left for a hotel.

Staring... and sobbing.

So, anyway, another year gone and another year older.

This is the way my day started:

My beautiful four-year-old daughter woke up in the bed next to me. (She slept in my bed because my parents were in town visiting and were using her room.) The first words out of her mouth were, "Good morning, Mama. Is today your birthday?"

"Yes, Olivia, it is."

"Well, HAPPY BIRTHDAY, MAMA," she said to me, as she wrapped her arms around my neck. And then she burst into the Happy Birthday song.

What did it matter what happened during the rest of my day????

What a gift.

In the evening, I enjoyed a homemade lasagna dinner, courtesy of my mother. And then my children gathered around the cake as we lit the candles.

My daughter sang a second time.

My son cannot sing the words. But he was so very, very excited about the whole thing.

I got him to say "mama" after everyone sang.

And, he was THERE.

Both my children -- my sweet, gorgeous children... And both my parents -- my devoted, giving parents...

They were all there to celebrate the fact that I was another year older -- that I have survived one hell of year ...

and not only have I survived, but I can still enjoy the cake. (Not a small thing to say, given that there was a period of time last year when I couldn't eat.)

This weekend, some fabulous gals are going out with me to celebrate the fact that I am 35 and still standing, even after this hellish year.

I am so lucky to have these people in my life. I will never overlook how wonderful it is to have people in my life who bring laughter to my worst days.

That is what 34 taught me.

July 9, 2010

Wisdom Beyond Her Years

A conversation I had with my four-year-old daughter, Olivia, while we watched her brother swim:

There are some people who cannot talk, Mama.

Like Daniel.

And some who cannot see.

And some who cannot hear.

There are people who cannot walk.

And there are people who cannot move their arms.

(What a surprise that last one was. I have talked to her about any number of differences in people. But I am not sure if I have ever mentioned paralysis. Of course, it only takes Olivia one time to hear something, and she remembers it forever.)

But, mostly, there are people who cannot talk.

(Well, who knows how the numbers stack up? I imagine the number of non-verbal people is far surpassed by those with serious vision and hearing impairments. And I'd guess, too, that there are more people with paralysis than those who are non-verbal. Not really sure, though. And I'd never get into such specifics with a four-year-old. I just wanted to listen to where she was going next. Oh, and she REALLY DOES talk this way. Maybe that isn't all that impressive to those of you who have only typical children, but it is incredibly amazing to me.)

Are the words just locked inside him, Mama?

Yes, baby, they are.

Are they locked really, really down deep? Like behind a gate?

Yes, baby, I think that is a good way to think about it.

But, WHY? Why are they locked up so tight?

(Oh, dear God, nothing ever prepared me for this. Nothing. How do I answer her? Yet the one thing the past year has taught me is there is not a lot of time to think when you come face-to-face with realities for which we have no way to be prepared. You either run away, or you stay and do your best and pray that you don't screw up too badly. So, I gave it my best shot...)

Well, Olivia, I don't know for sure. But, for some reason, Daniel can't get the sounds to come out the way he wants them to. He would like to. And it is really frustrating to him because he can't. Just like it must be frustrating to people who can't see or hear or walk. It isn't fair. And I don't know why it happens. But I know that people who can do those things easily, people like you and me, have a very special job. I believe God wants us to help all the people we meet in our lives like Daniel.

(I don't talk to my daughter very much about God. Insert Catholic guilt right H-E-R-E. But I do on occasion. And it is instances like these when I am most apt to do so.)

I help Daniel.

Yes, you do, baby. (And in more ways than you can appreciate at your tender age.)

Like, when we are riding in the car, and we pass something, I will say, "Look Daniel, there is a truck. Or there is a tree."

Yes, baby, I hear you talk to him about the things you see. But I think the biggest way you help him is with all the things you do that show him how much you love him. Like when you run after him when you think he is getting too far away from us. And when you give him big hugs and kisses. And when you notice what makes him happy and try to make sure he gets those things.

And you help me, too, Olivia. Every time you make me laugh.

Daniel is so very lucky to have you as a sister, and I am so lucky you are my little girl.

Daniel is my very favorite boy, Mama.

I wish I had a key to unlock that gate.

Me, too, baby. Me too.

Thank you, dear J

I have no idea if I ever will be able to make sense of my life, or of life in general.

But there have been people--people with no obligation to me or my children--who have been incredibly kind.

Every time I drift into deeper waters, one of these people pulls me closer to shore.

One such person, a mother whom I met through cyberspace, called me a few nights ago. We have corresponded via email many times. But we had never before spoken.

She, too, has a child with autism. She, too, has a younger child who fills her days with laughter--and drama.

She, too, is trying to take care of her children by herself. Her husband is in Iraq, trying to help the people of that country rebuild their lives.

Rebuilding lives ... It is easier said than done.

This woman is amazing.

The way she describes her children captures me.

She is an inspiration.

And so I leave you with her words. Take the time to read them. You will be glad you did.


To My Friendly Neighborhood Homeowners' Association

Yes, the grass in my yard is getting high. And I don't use the edger every time I mow.

I will get to it. But, thanks ever so much for your concern about my grass.

In the meantime, I'd tell you to BITE ME, but I'd fear the possible resulting infection.

July 6, 2010

Oh, Brother

I am an only child. It has its benefits. But I think I would have preferred having a sibling -- assuming the sibling wasn't some sort of jerk, of course.

Growing up, I thought it would have been especially nice to have had a brother. Something about the idea of an older brother appealed to me -- a confidant who would share his innermost thoughts and shine light on the mysterious workings of the male mind. (Yeah, right. But it was a nice thought back then.)

Now, I wish I had a sibling for entirely different reasons. Mainly, I wish my parents had another child who could balance out the worries I bring to their lives --someone with a relatively smooth-sailing-life and perfectly typical children. And, there is the problem of who in the heck I could name as guardians in a will, but, holy crap, if I think about that I will have to open a bottle of wine.

So, all of that being said, I just have to take a moment to note the evening I spent last weekend with two great "old" pals. I went to pre-K with one, and to Kindergarten with both. We grew up in the same little suburb and went to the same schools all the way through high school graduation.

They are a couple of great guys. Smart, sweet and sincere.

As I ate ice cream with them outside the Cold Stone Creamery last Saturday, I listened to them talk about the circumstances of my life and couldn't help but think that this is how two brothers would probably talk about me. For a moment, it was as if they had even forgotten I was sitting alongside them.

"Whatever she does," one of them said to the other, "she has to make sure she protects herself."

"I mean it is not even like she can go out and work a normal job," the other said. "She has a kid with all these special needs."

I was lost, for a moment, listening to them. It is not like I have seen them much in recent years. But they learned about the stress in my life and both reached out to me.

And then one of them said to me words I never will forget.

"I would just hate it, Leah, if you had to go through all of this again -- if you were hurt again."

They are good, genuine guys, and I am so very glad to know them.

I would have loved to have had them for brothers.

Thank goodness they are my friends.