Every book is a window

Last night Jaden and I finished reading The Lion, The Witch and The Wardrobe. This wasn’t the first “big book” I’ve read to him but it's the first that we’ve finished. The others were just too far beyond his comprehension, but I thought that The Chronicles of Narnia might be just about right, and they are. He still doesn’t understand even half of what I’m reading, and because of that I’m even more proud of his ability to stick it out and listen anyway. I go back and summarize for him often and we ask each other questions about what we’ve read.

Not to brag (OK maybe a little?) but I’m proud of myself too. It’s nice to see the end results of years of struggle play out well. Jaden is – to put it mildly – not a very attentive child. I first started reading to him when he was maybe 6 months old. You know those little one minute, 3 word books with the little finger puppet in them to hold interest? Yeah I love those. Even then I had to hold Mr. Squirmy down and force him to pay attention, and that went on for a while. This was not something done lightly but a very weighed decision. Yes I’m an attachment parent and part of the “free the children” movement (not really I made that up,) and don’t believe in pushing a child too hard too fast, but maybe even then I sensed this was not some regular phase he’d grow out of but something he had to be taught. I was most successful by reading to him while I was nursing, his favorite thing, and I had my captive audience.

Fast forward years later and I have a child who listens to a story even when he doesn’t understand it. Who begs me to read to him on the nights when I waver and say we stayed up too late and maybe we should skip it. A few weeks ago as I turned off the light he said “Thank you, Mommy.”

“For what?”

“For reading to me,” he said, though I do it every night. And I tucked that moment into my box of treasures.

Reading has been a foundational piece of my life, so I was determined from the start that “this child will be a reader!” How important it was I didn’t even know at the time, before we understood that language in any form was one of his biggest challenges. How much more so essential it is that he will want to read, to listen, to understand. If the love for it is there, he will overcome his obstacles to accomplish it. Because he’s Jaden, and he’s strong-willed and determined to do whatever he sets his mind to do.

So to me, last night was a coup, a shining star in the sky that is opening for Jaden. When we were done I asked “Why do you think the Professor believed their story and didn’t think they were crazy?”

“I don’t know?” he said wondering.

“I think it’s because he’s been to Narnia too.” I looked at Jaden. “Actually I know that’s why, because there’s a book about that too.”

“There’s another book?” he asked, his eyes getting big.

“Yep. There are several books about Narnia. Would you like us to read them all?”

“Yes!” he exclaimed with a smile.

And his world opened up that much more.

Every book is a window

Every word a step

Into unknown territories

And unchartered depths

Every idea, whether

Wrong or right

Opens rooms for thoughts

To shine lights in the night

Education’s a dry thing

But learning abounding

When a child realizes

The world is astounding 

A life may be poor

Even if rich or grand

Without adventures to read

Of some distant land

So you take your gold

And I’ll take my mysteries

Shakespeare and Dickinson

Roman Empire histories

I’ll skip all the drama

and allegory;

The world is too small

Without a good story

Copywrited (In other words, please don't reprint without permission. Thanks!)

A beautiful wedding and tough conversations

My favorite time of day is Jaden’s bedtime. Not because he’s going to be asleep (though I won’t lie, sometimes that’s nice) but because that’s our time. Quite often we read for a while, on rare occasions we hook up the dvd player and watch a few minutes of a movie, and that’s our time to talk about anything that’s on his mind.

One of Jaden’s happiest breakthroughs is that a few months ago we began to have actual conversations. I’ve waited so long to hear what’s going through his head. He started really talking close to a year ago, right after we switched his speech therapy to Vanderbilt Bill Wilkerson. Because of this I’m in love with his speech therapist and think of her as part of our family. But real back and forth conversation took more time and work from all of his team of superheroes, as his receptive language is on a lower level than his expressive language. He struggles to understand us. The first time he told me a sentence in answer to “what happened today?” I had to act casual and turn so he wouldn’t see me tearing up. Way, way bigger than when he took his first steps.

So as soon as he was able, I used bedtime as a safe time to practice and talk to me about whatever was on his mind. It’s easier then, when his thoughts and eyes and body aren’t bouncing all over the room.

Tonight it was sad. I should have seen it coming maybe, when he asked me in the car “Why do people die?” I talked to him a little about it, trying to walk the line between being honest and not scaring him, while we put away groceries. I could tell he was done when he changed the subject himself and breathed a sigh of relief. I hope the birds and bees question waits for a while longer.

Laying in bed though the subject turned to two things I can’t fix for him; bad dreams then  the subject of our divorce. With tears he begged me again to “be married to daddy again,” with “’What a beautiful wedding,’ do you remember that in the song? ” he asked as he sang the lines from Panic! in the Disco’s  I write sins not tragedies. “’What a beautiful wedding,’ be like that. With the cake, and the flowers, and be married.”

I held him while he cried about it, I held him while he begged, I held him while he asked if daddy was going to marry someone else, and I held him while I told him again there wasn’t anything more I could do about any of it.

On second thought can we go back to why people die and the birds and the bees?

(I lol at how sweet that Jaden thinks the video is about a beautiful wedding…
Yes I gave it away - I’m a bad mom. We love our music!)

You’re just going to have to come see for yourself

“Ugh, I can’t explain it. You’re just going to have to come see for yourself.” Words we’ve said or had said to us several times in our lives when explanations fail and nothing but the experience will do.

This is how life should be lived. Not always balanced out in ledgers with pros and cons and risk management but with leaps of faith and “why not’s”.

I think about this now, after reading something once again that tells me that stress for a parent of a child with Autism stays at high alert pretty much forever. OK sure I’m 9 months post-diagnosis and still find myself saying “He wasn’t diagnosed very long ago,” for the mere fact that I feel like I’ve barely processed it yet. But is it too much to let me hope that it gets… easier? Even though I can’t see how right now?

I am however going through a divorce and recovering from various other not-directly-related-but-somewhat-related blows, so I may be a little sensitive to it all right now.

But I’m digressing slightly. Only slightly. The thing is, in times like this, I can’t help but think about my mindset when I decided to have a baby. I was 32, and life before then had been anything but calm and drama-free. I had in my early 20’s been told my chances of getting pregnant were basically nil. So I went through the whole process of grieving and accepting that I wasn’t going to have a child. Later I found I could get pregnant by the fact that I did, then miscarried. Then divorced. And went through a whole different but same process of accepting that being a mom wasn’t going to be in my future. Came to embrace it even. Being child-free meant being free to do other things.

So when I did meet, fall in love, and get married to someone who had a strong preference for having children, I was still on the fence about it. I’d say when it happened I was 60-40 and “If we’re going to do it we might as well do it now.”

It was the way things looked on paper that had me trepidatious. The costs and sacrifices being weighed with the ghost of an idea of loving someone so much they’d be worth the costs and sacrifices. I was never much a of coo-er over babies that didn’t belong to me somehow. I didn’t melt over other people’s children and wish I had one too. I just saw dirty diapers and snotty noses and screaming tantrums.

And these are the things I think of now. What I’d had on that “paper” was nothing – nothing – compared to the true costs and sacrifices. And if I would have known, I would have said NO. No way. Even had the rest been put on paper – his beautiful smiles, witty personality, what it feels like when he says “I love you, Mommy,” - I would have mistrusted myself for the sentimental twit I can be sometimes. No trustworthy message could have come with that price tag that I would have believed “and you’ll find it all worth it.”

I would have said “I think I’ll take option B and take my childless self to Hawaii now, which I may never see with option A.”

I would have never known the person I missed out on, the indescribable thing that goes beyond dirty diapers and snotty noses and germy race-car shopping carts. Beyond high needs and Autism and endless worry. Beyond every sacrifice I’ve made and thing I’ve lost that I would have never believed worth it.

I would have never known what I’d lost and that makes me thank God - THANK GOD that I didn’t know what I was sacrificing. 

The funny thing is, on paper many people would have said to me “If that’s the way you feel, you probably shouldn’t have children.” And it’s true that many probably shouldn’t, and do anyway. But you just never know sometimes what a person’s made of until they get there. Wherever there is for them.

I laugh because I’m only relating my own story and not trying to convince anyone to have children. Though I do think about those who have had abortions because they didn’t think they could pay the price demanded for a special needs child. The ones who did see it on paper. The ones who couldn’t imagine that the thing they sacrificed to preserve their own way of life would have, in just a few months, been the thing they would have gladly died for.

What would I say to someone who's on that fence? “The love, the joy, the anguish; it’s indescribable. It’s like- it’s like… You’re just going to have to come see for yourself. But it’s so worth it.”

On lungs and toes and becoming a donor

Yesterday I called my estranged husband and uttered words I never thought I’d say.

“Ok,” I said as if in urgent defeat. “I want to be a donor. If something happens to me and they can find anything usable, do it.”

I don’t know what they’d use. Not my lungs because I smoked for 17 years. I have heart palpitations and a weak valve, so I don’t know if that’s an option. A liver function test a few years ago showed me in excellent health, but 12 years of daily Tylenol to control the Fibromyalgia probably makes it less than prime.

“The only thing that I can think of that works right is my toes,” I mused. I don’t know. The point is if they can use something they can have it.

I won’t go into all the reasons that this is a big deal to me, and why I’ve been holding out. Most of them are crazy and illogical. But I will tell you what changed my mind.

My niece is 14 years old. When she was 12 months old, she was diagnosed with Cystic Fibrosis. A few weeks ago she went in for some tests to see if she should be considered for a lung transplant. The appointment was made months ago. Her doctor from Children's Hospital, I was told, said it was just a precaution. It had become too late for another little girl, Crissi’s friend, and she quickly became too sick to get the transplant. She died last year. So the doctor was feeling jumpy. I could understand that.

But they didn’t even make it through all of the “precautionary” tests. Crissi’s case was critical. Her lung function was at 12%, her blood oxygen dropped to 78. She was admitted to New Orleans’ Ochsner Hospital immediately and quickly put through the committee to get a lung transplant. As of last Thursday she’s approved and officially on the list.

Time is of the essence. Urgent. Her doctor says she’s standing on the edge of a cliff and once she starts falling, they can’t stop the fall. The rest of her body has to remain healthy enough to survive the surgery and ensuing struggle as it fights to reject the foreign organs and compromises with the drugs that will keep it from fighting them.

So I pray, yet as I do I hit walls. I know what we’re waiting for. We’re waiting for someone to die, someone who didn’t know they were going to die.

That’s hard to pray for.

Yet it happens every day, and we all live knowing in the back of our minds that one day it could be us. But we’re waiting for the “right” person to die. Someone who is a match. Someone who has decided that if they died, they want someone else to live on. To benefit from the tragedy. Someone who has been more unselfish than I and became an organ donor.

So if you’re reading this and you have your own crazy, illogical reasons for not being an organ donor, that’s ok I won’t push. Maybe you just haven’t got around to voicing your preference, or making one. Maybe one day you’ll find yourself in the horrible position of having to decide for someone else.

Crissi is a happy, witty, bravely vivacious 14 year old. She should have her whole life ahead of her. Only a lung transplant will give her a shot at that. Some wonderful caring person is going to give that to her. Someone whose life course wasn’t altered by the decision, yet they have the chance to alter someone else’s life completely. I’m so grateful to them already.

I can’t look…

I don’t mind questions about Jaden and Autism; in fact I welcome them. It doesn’t matter if the questions come from the utmost ignorance, as long as the asker’s heart is sincere in wanting to know the answers. It means they care, it means they want to learn.

I also started from the utmost ignorance; television dramas and stereotypes my only education that made me miss what should have been obvious.

One inevitable question, usually asked in halting, apologetic words, is “What about the future?”

This is the question that silences me.

That word has changed for me. Once upon a time to me “the future” invoked a picture of a road stretching out long before us with colorful shadows of might be and possibilities marking milestones.

Now the future is this week. I know what we’re doing this week. We’re going to school four days of the week and going to other therapies on two days. I have waffles and vegetarian chicken nuggets in the freezer, Dominos on speed dial, Lays chips and Chips Ahoy cookies for snack time, because that’s all Jaden will eat. The laundry is done. I’m ready for the future.

But I know that this isn’t what they’re asking. And I can’t say. I can’t even look.

Sometimes I glimpse up, usually unintentionally, and the shadows of “might be” have changed. Hopeful colorful ones are still there but they’re now joined and mixed with scary dark ones. Every time Jaden hits me when he’s mad, the dark ones loom in front of me. Every time he gets distressed and just can’t understand what I’m saying to him, or when I see his neuro-typical peers shun him and break his heart because he doesn’t understand. Or when he gets stressed and loses his words, or starts screaming at strangers to shut up.

I glimpse ugly futures every time I read a story about police mishandling or abusing a person with Autism, because they didn’t understand. Or when I hear about people forced into institutions, or becoming homeless on the streets, or victims of hate crimes, or perpetrators of crimes.

It makes my heart literally hurt, it makes my chest tight, and I look down. I keep my eyes to the ground at my feet.

I can’t look.

It’s not as if I’m ignoring the future. Almost all of my time, energy and money is going towards it. Diligence relaxed would ensure that the colorful shadows die. I’ve found that walking the road seems more like climbing cliffs. I heed the well-worn advice to not look up - or is it don’t look down? Just don’t look. But I’m climbing.

  

I’m reminded often of the scripture “Where there is no vision the people perish.” It is a bit like that. Hope for the future is an essential part of life, even if things don’t turn out as you envisioned them. And I do have a few hopes for myself. I know it’s necessary to be able to keep going. But like every good mother my future is wrapped up in my child’s, and I can't see it.  

I believe in magic...

I’m still at the Brown Center so much they’re probably tired of me by now. I’ve already worn out the average “new parent” jitters time. I don’t have the “jitters” anymore, but I like being there and watching how they do what they do.

When I see it, it all looks like play. But at home it translates into something magical. Jaden is having conversations with me. Actual conversations. There’s still language barriers and misused words, still some drive-me-up-the-wall echolalia. But the gap is closing.

Last year I would have sold everything l had to know what was going on inside of my son’s precious head. His intelligent eyes made it impossible not to believe that whatever he was trying to communicate to me in his completely alien babble was something interesting, poignant, even amazing. And I was missing it.

Harder than my own loss, it was obvious to him that he was unable to communicate. His struggles were a thing of great admiration and heartbreak. He never gave up. In the past year I and many other wonderful people have worked hard to help Jaden achieve what he wanted so badly. But I believe the crux of his success is founded in the fact that he is the most stubborn, strong-willed, ambitious, determined person I’ve ever known. While this makes for some interesting challenges in parenthood, I wouldn’t change him for the world.

But I digress. In truth one of my fears with sending Jaden to ABA based therapy was that I didn’t want them to change him. I didn’t want a little automaton who said and did the right things at the right times like a well-trained dog, and in that losing himself somewhere.

But what’s happening instead is a transformation. It’s like a static television that his therapy team is helping to fine-tune, or a rubiks cube that they gently match the colors in the right place. All the pieces of life were there for him, he just didn’t know how to make it come together in his head.

I watch, I listen, I learn, but to me it still looks like magic.