Today marked 36.

36 years on this Earth, and I think my face shows every one of them and then some.

I struggled today.

And it is difficult to explain why.

I suppose, to put it simply, this is not even close to what I envisioned life would be like at 36.

I suppose I struggled today because accepting reality can be so damn difficult sometimes.

And my reality is that I sat through an ARD meeting (also known as an IEP meeting) yesterday listening to educational evaluators describe tests results showing that my son is severely, incredibly, profoundly, greatly, monumentally challenged. BUT, despite those challenges, they would like to offer him an amount of therapeutic services that might be appropriate for, say, a kid who stutters.

My reality is that while I sat through this meeting I wasn't thinking primarily about my son's difficulties and how he will be challenged for the entirety of his life. I wasn't thinking primarily of how sad it is that our country places such a low priority on the education of its young people, much less the education of its special needs population. I wasn't even thinking of how stinking unfair it is that I cannot get a damn bit of help-- from insurance companies or the government -- for my son. Instead, I was thinking primarily about how my daughter, my son's only sibling, would handle the stress of trying to help her brother when she is an adult, and she is the only family member left for Daniel to depend on.

My reality is also that I have dealt with more pain the past three years -- pain completely separate and apart from autism -- than I have known how to deal with. The people who have read this blog since its inception know that I started it during a time in my life when I felt desperate and alone -- at a time when I saw my marriage blow up and my life completely turned upside down. I felt as if doors were continually being shut in my face, as if the person I had trusted most in the world had just disappeared, as if I was faced with a boatload of responsibilities for two beautiful children... and if I was not entirely alone, I was without the person I needed most.

That was the fall of 2009 -- a time in my life so horrible that the experience wiped many good memories of so many good years from my brain.

That time and the years since changed me in so many ways.

Some of them good. Some of them bad. And some of them ... well, I am just not sure. Is it a good thing or a bad thing when you go from thinking that most people in the world are honest and decent to thinking that such a belief is ridiculously naive?

Anyway, here I am... another year older if not any wiser. And the circumstances in my life have changed. And thank goodness they have. I know things can always be worse, but when I think of where I was two years ago, or even six months ago, if things had gotten much worse .... I hate to think about it.

I am not divorced, as you might have figured out from my last post.

I still struggle with how to be a good mom to my challenged son and my amazing daughter.

I still struggle with feeling like I am never doing enough for my children, most especially Daniel.

And now I struggle with mending a relationship that was once filled with so many expectations, so many dreams, so much friendship, so much laughter .... so much, so much, so much.

I have to continually remind myself that the heart is such a complicated thing ... just like the brain it is impossible to fully understand. I have to stop questioning myself and my motives and accept the simple fact that the things I am trying to do are based in love for my children and love for their father.

And I have to remind myself to try to live in the day, which is something I have been doing for an incredibly long time.

I am taking steps that I hope will help. I have accepted part-time employment, and I have even found myself in church -- trying to find comfort and peace within the rituals of Mass.

I have so many wonderful people in my life for whom to pray -- people who helped lift me up these past few years when I felt like I could barely function. And, surely, I can find some peace in that.

So, I ask all of you who know me, or who think that you might have some experience with the things about which I write, to keep me in mind from time to time -- either through prayer or good thoughts.

Because what I would really like for my reality to become is ...a peaceful one. And I am not yet there.

Fourteen Years

Fourteen years ago I walked down the aisle on my father's arm, into the arms of the only man I have ever loved.

I was so young -- just a few weeks shy of my 22nd birthday. If you had asked me at the time, I would have said that was too young for most people to be married.

But not me.

Because I was sure.

Sure of myself and sure of my love for this person I had pretty much been infatuated with from the moment we met.

We dated for four years before we married.

We waited another six years before we had our first child.

We both had advanced degrees. We had finished our educations while living in our first marital home -- a cozy apartment hundreds of miles away from our families, from everyone we had ever known, in a place where we could be on our own.

Just us.

Just us and our persnickety cat (who is, amazingly, still alive today at the age of 16).

Just us and months of snow and freezing temperatures. (But who cared? We were young and in love. Who needs extra blankets?)

Just us and the relatively worry-free existence of two young adults with plenty of confidence and little to fear.

The years went by and we moved closer to family; and he started talking about having children. I wasn't quite sure I was ready, but I knew I wanted to be a mother. And then came one frustrating day in court as a rookie deputy prosecutor, and I thought to myself, "What am I waiting for? Why not? I want to be a mom. Who knows how long it might take? I love this man and trust him with my life."

Nine months later, Daniel was born.

Nothing changes a woman's life like becoming a mother. Nothing.

And that goes tenfold -- no, a thousand-fold -- when something is wrong -- very wrong -- with your child.

When he was born, Daniel was simply beautiful.

He still is.

I remember when the nurse was cleaning him, and my husband was practically bursting with pride, I asked, "Does he have ten fingers and ten toes?", which was my way of looking for some assurance that my baby was OK.

I knew that, sometimes, babies are not OK.

Daniel had ten fingers and ten toes. He had a mess of hair and a hearty yell. He scored a 9 on his first APGAR and a ten on his second. He could grab onto your finger with amazing strength from the second he came into the world, and he could darn well eat enough for three average babies put together.

But he was not OK.

Almost eight years after my son's birth, I know too much about too many things I wish I had never given thought to -- autism, lymphatic malformations, ABA therapy, crappy insurance companies, apraxia, heartache, loneliness, disappointment and fear.

If I try to look on the bright side -- and that can be a struggle when the brightness seems more like a dim glow -- I also have learned what its like to have a friend who is one of the most giving people ever to walk the Earth, and I have had a year of therapy that has helped me deal with one hell of a lot of anger. I think I have picked up some much improved listening skills, too, if I can toot my own horn for a bit.

Fourteen years after putting on that dress and walking down the aisle, I am still married, and I still love the man I married.

But things are so much different than they were in that cozy Midwest apartment.

So much has been lost ...

Some days I feel like I am barely functional. I feel like I have all these balls in the air, and I never learned to juggle, much less catch. I still mourn the dreams that I had for my son, whose future most assuredly will be worlds apart from how I pictured it that day I peed on the stick. I struggle with how to maximize his potential, with how to make his days as happy as they can be, given how difficult this world is for him. I struggle with how to make my daughter's life as "normal" as possible, with how to make sure she is not overlooked, with how to foster a loving relationship between her and her brother that will last a lifetime, because Daniel is going to need Olivia for so much after I am gone.

I struggle with a lot of other things as well... so many very painful things, none of which I ever dreamed would be a part of my life's story.

With all that said, I don't think I am in much of a position to give anyone any advice on anything other than this:

If you find yourself dealing with a disabled child, the greatest gift I think you can ever give to your spouse is to say, as often as you can, "I love you." Take him or her in your arms and tell them, "It will be OK. And even if it is not OK, it will be OK. Because we will make it OK. Because I love you. And I will never leave you or this child. No matter what."

Say it in some form or another as often as you can, even though there will be times when you don't feel it -- when you are struggling with the weight of fear and sadness and even anger.

Both parents need to say it, because each will need to hear it. A lot.

It may not be enough. But, maybe, if you say it enough, it will be.

My Dad

I am very lucky to have a father who defines his self-worth, in large part, by what he does for his wife and daughter.
So, in honor of my dad, I would like to share a story.
I think it reveals a lot about who my dad is as a father.

When I was probably five-years-old, I had a rabbit puppet named Natasha. She wasn't very fancy--just a rag-tag blue puppet with whiskers and a pink nose. But I loved her.

My parents purchased Natasha during a trip to visit my grandparents. If memory serves, the store was about four hours into our five-hour trip to the simple but beautiful home in Northwest Arkansas -- where my grandmother baked her melt-in-your-mouth angel food cake especially for me and my granddad would play hide and seek for hours.

Natasha slept with me at night and she accompanied me on trips. Until, one day, she was gone. Lost.

My heart was broken.

I had dozens of other stuffed animals, all of whom were bigger and fancier.

It didn't matter. I was heart-broken.

And so my father, who always has believed that you either find a way to stop someone from crying or join in their tears, got in his car, drove four-hours each way and came back with another Natasha. (Thank goodness she wasn't an original.)

The problems in my adult life have not been that easy to solve.

But that has never stopped my father from wanting to.

My dad never missed a dance or piano recital.
He loved every pet as much as I did, and he dug a grave at the death of each, with tears in his eyes.
He went down to the courthouse to pay the speeding ticket I got when I was 16 (and it was a whopper.) He told me not to worry about it but to be more careful. (And he didn't even tell my mother.)
He waited for me at the finish-line of the half-marathon I ran year-before-last, when I was running just to remember that I was still alive.

I have known from a very early age that I am the most important thing in my parents' lives. They each set such a high standard of parenting -- one that, in many ways, I doubt I will be able to equal.

If I could tell my dad one thing it would be to stop worrying so much, to stop trying so hard to find a way to fix all my problems.

But that would be like telling the Pope to stop praying.

Happy Father's Day, Dad. You are very, very loved.

El Baile de la Ranita

Mis amigas de Peru presentan: "El Baile de la Ranita"

Cool as a cucumber, my five-year-old girl walked up to the microphone and said those words.

And she didn't even sound like a Gringo.

Instead, she sounded so very much like her teacher--the beloved teacher from Columbia who has filled my daughter's days with patience and enthusiasm.

Wow, wow, wow.

My daughter, my baby, my torpedo of emotion and drama, not only stood in front of a HUGE audience in an unfamiliar auditorium, she listened intently for her moment to approach the mic. And she said her line perfectly -- in Spanish!

I looked at the other parents in that auditorium, with their cameras flashing and their extended relatives taking up way too many chairs. I know that they, too, were excited to see their children growing up before their eyes.

But how many of them appreciated -- really, truly appreciated -- what was taking place at that very moment.

They were witnessing little miracles.

Each time a child waited to take the stage and watched for the signal.
Each time a child danced to the music.
Each time a child sang.

Each time a child spoke .... every single word .... a miracle.

I know.

I know because my daughter's brother, my first-born, sat beside me in the audience, with no understanding of what his sister was doing, with no real appreciation of what it means to have an "end of the year show."

I know because my sweet boy cannot sing .... or speak.

I know because at the exact moment my daughter approached the stage, my seven-year-old son decided to bolt. I went after him, and then I stopped. I turned my back to my son with the hope that he wouldn't go far.

And I watched my girl.

How can a mother be filled with both joy and fear in a single moment?

You would know if you walked a mile in my shoes.

So many times I have, in a way, chosen Daniel over Olivia.

I have told her, "Just a minute, Olivia," when I have been pressing Daniel to make that extra effort -- extend his index finger to point, move his head up and down to signal his agreement, open his mouth and try -- just try -- to give me the closest approximation of a word that he can.

I have gone to her brother on the playground when Olivia wanted me to watch her. But Daniel was lost in a stim -- probably repetatively dropping wood chips -- and I just couldn't bare to see him trapped in his own world.

I have put her to bed when my mind was lost in the "what ifs" and the "what could have beens" -- when my heart was breaking and I was missing her father and wondering what in the hell became of the dreams I once had for my family.

Without a doubt, I have not given Olivia the attention she would have received if autism hadn't been in our lives.

So, in that moment, at the back of the auditorium during my daughter's end of the year school show, I turned my back to my bolting, non-verbal autistic son. And I watched my daughter.

She nailed it.

I knew she would.

I inhaled. I exhaled. I quickly stored the memory away in the little part of my brain that still works.

And then I turned to look for her brother.

He hadn't gone far. He was watching me. He was all smiles. It was just a game to him.

I grabbed his hand and brought him back to our seats. I wondered if there was anybody in the crowd who had noticed the child running away ... away from the words and the crowd and the music ... away from what must have seemed like chaos to him. Was there anyone who wondered if he might be one of "those kids" they hear about in the PSAs about autism? Was there anyone who watched me dart after him and questioned my sanity? (I question it myself, at times, and it certainly has been put to the test.)

Probably not. It was a pretty happy crowd, after all.

People enjoying their little miracles ...

My little miracle, my dazzling Olivia, groggily got out of bed as I typed this tonight. Without a word, she walked to the couch and fell back asleep. She is just inches away from me as I type these last words.

Every day, I look at the freckles on her nose, at the dimple in her cheek, at the eyes so clear and beautiful that they surely will some day make a man's heart melt.

If she only knew how amazing I think she is ....

I try to tell her. Every day. And she looks away and smiles, as if the compiments are a little too much for her to process. (I don't take compliments well, either).

I try to tell her because I want to make up for all the times I have turned my back on her in order to look after her brother.
I try to tell her because I worry about her spending her twenties and thirties on a therapist's couch, pouring out her heart about all the dysfunction she witnessed as young girl.
I try to tell her because I hope I can somehow help her turn into a healthy adult, with healthy relationships, and a healthy self-esteem.
I try to tell her because I want to somehow make up for my shortcomings as a mother.

I owe it to her, after all.

Because she has given me more in the past two years than I could ever possibly give to her.

Because it is moments like these ... Mis amigos de Peru presentan: El Baile de la Ranita ... that remind me of my blessings, and of the reasons to hold out for more.

Autism robbed me of my son.

I have never spoken those words.
But I have heard them.

I recently read a blog post that mentioned the writer's frustration with those words. I wish I could remember which blog it was, but I honestly cannot. There are so many wonderfully written special needs blogs that I can get lost in them for hours if I am not careful. So many of them make me pause to reflect on things that are dear to me, as well as things that are extremely difficult to think about.

And so it was with this particular post ....

Is it wrong for autism-parents to say that the disorder robbed us of our sons and daughters?

I have heard a dear friend of mine say it.

I have heard another dear friend comment on how uncomfortable the words make her feel.

I must admit -- and this is probably going to make me a little unpopular with some folks -- that my first reaction to the post was to wonder if the writer's child was hanging out on that "high functioning" end of the spectrum or if he/she was chillin' with the kiddos closer to my son's place -- you know, the kids whose autism is never, ever in doubt.

Oh boy. There it is.

I am probably going to be shunned by parents who think I just trivialized their worries concerning their children.

I do not mean to. Honestly.

I know that all parents have sincere, agonizing worries when their children struggle with communication and social skills enough to legitimately be placed on the autism spectrum.

But in all honestly, the sentiment that the writer takes issue with -- the idea that autism robbed a parent of a son or daughter -- is much easier to understand when you picture a child who is unable to utter a single word ... a child who is incapable of engaging in any meaningful conversation with anyone ... a child who cannot begin to understand the purpose of play ... a child who struggles with the meaning behind not only words, but even gestures.

I don't ever recall thinking that autism "robbed me of my son." I am a very literal person, and I think the words don't make perfect sense to me because I believe Daniel always has had autism -- from the time he entered the world. And, so, my thinking goes: how could autism rob me of a child when my child has always been autistic -- when autism has always been a part of him, and I have never stopped loving him as a son from the day he was born?

But don't get me wrong.

I do believe autism robs.

And robs and robs and robs.

It definitely robbed my son. It robbed him of so many things that I can't even begin to really think about them -- because to think about them would be to return to days when I was so lost in grief that I almost lost myself.

It robbed me, too, as his mother, and it robbed his dad as a father.

It robbed me as a wife. And it robbed Daniel's dad as a husband.

It robbed Olivia as a sister.

And it robbed Daniel's grandparents.

Autism robbed me of an opportunity to know my son in the way I should have been able to.

And it robs Daniel every day of the ability to show the world just how much is going on inside that mysterious mind in his beautiful head.

So would I say that autism robbed me of my child? No, I would not.

But I take no issue with those who feel that way, only to say that I hope all parents who struggle with autism find a way to laugh each day, to rejoice in "small" accomplishments, and to find their way back to what matters most when they find themselves slipping into despair.

Capturing Lily

She was under a large chest of drawers in my daughter's bedroom.

Think beady black eyes and whiskers.

Think rodent.

And I was on my belly trying my darnedest to get her out. Broom stick in hand, I gently poked and prodded, sending her scurrying every which way but my direction.

I had to round her up, and she could not be injured in the process.

Because unlike the mouse that our dear cat Lovey dropped in my house several months ago -- which sent me screaming for assistance -- THIS rodent had license to be in my home.

She is the newest member of the family.

She is Lily, the guinea pig.

My daughter thinks she is pretty darn cute, and I must admit that she is. But, damn, was she hard to capture after my daughter allowed her, without my permission, to roam.

The irony was not lost on me. I could not even stay in my home last winter when my neighbor hunted for the mouse that Lovey brought on the premises. I screamed like a crazy person. But, there I was, last night, at times almost eyeball to eyeball with a rodent -- a very quick rodent -- and I was even making kissy noises to entice her into the open.

My daughter wanted so badly to help. She began to wonder if Lily would stay forever under the dresser, only to wither away and starve. (Haven't I mentioned that I sometimes worry about Olivia's anxiety?)

But there wasn't much my daughter could do. And our joint frustration started to build -- although it was, at the same time, pretty amusing.

Little Lily seems to take a poop with every third or fourth breath, and I could just picture the stuff accumulating, pellet by stinky pellet.

Lord, ain't life something?

What really cracked me up about the whole thing was my five-year-old daughter's take on it.

"Mom," she says to me, "Why don't you just call some workers?"

What the ......?

Workers?
Do I look like I have workers????

My house is a mess, my hair is too long, my toenails have a teensy bit of paint on them from the last time I took out the polish two months ago, and laundry is piling up in three different places.

There may be a few parents of kids at her pre-school who have some workers, but I am not among them.

Finally, I decided the only way to get our little friend was to move the dresser. It was heavy, but I pulled the thing part-way out from the wall. I think Lily was so blinded, she didn't know what the hell to do.

And I got her.

A little TLC later and she was back in her cage.
Olivia was finally getting in the bed.

And it was time for some Q&A, Olivia-style.
Mom, how did God make people?

How long has the Earth been here?

How did He make the land and the water and the animals?

Is God in our bodies?

How can God be everywhere?

Sweet goodness, shouldn't it just be enough that I captured the pig????

Sometimes, poop-included, motherhood really is sweet.

A few weeks ago I watched the movie Catfish. I had not heard about it, and I was intrigued to watch the story unfold, documentary-style -- a story of a woman yearning so intently for something different in her life that she went to unbelievable lengths to escape, if only in her mind.

It is a movie I will not forget, to be sure.

Because I can identify.

OK, so I wouldn't have done what she did --and I don't want to spoil the movie for those who may be hitting up a Redbox soon.

But ..... I know that feeling. That feeling of wanting something more ... needing something more than what makes up your life.

And even just saying that brings on the guilt--because I have many blessings in my life.

But I have been through my share of sadness, too. And I have learned lessons that I wish I had never had reason to learn. Here was the most difficult: as much as it hurts to see your child suffer with a disability, there are things that hurt much worse. And sometimes, you so badly want your life to be different, that it can reach desperate levels, like it did for the woman in that movie.

So, I don't know what others might think of what she did. I certainly don't approve. But I understand what motivated her.

I wish I didn't.