Thursday, July 29, 2010

A Good Day to Be Born

To my twin sons on their 8th Birthday:

Eight years ago today, right now, at 5:30 in the morning, on July 29th, I was waking up after a short fitful night’s sleep more excited than I have ever been in my entire life, because this was the day I was finally going to meet you, for real, and hold you in my arms, and I just. couldn’t. wait.

It was a hot, hot summer, kind of like this one, which has been making me think a lot of that one. At 6:30 AM when your Dad eased me into the taxi as we headed out to the hospital, it was already 89 degrees and the air was thick, promising a miserable day to come.

But I was deliriously happy, and ready to burst open with my love for you, gulping in the vibrant soupy air that would soon be traded for hospital cool. 

Hospitals are strange places, white and clean and cold, and full of their own very particular ways of doing things.  There’s a lot of “hurry up and wait” and we just rode it out with infinite patience, because we knew that soon, soon, soon, you would be coming out into the world, and our lives would change forever.

We were about to cross that crevasse, the dividing line between parents-to-be and parents, never to look back, always to move forward, so a few more minutes at the threshold wasn’t going to hurt. 

Imagining it for so long, it is actually unimaginable when it finally comes: holding you in my arms, seeing your tiny faces, so perfect, so….. you!

They handed each of you to me so briefly, just to snatch you away again and do hospitally things with you -- big healthy boys, they needn’t have done that!  But in that moment, I looked into each of your eyes, and it was love at first sight.

There was recognition: yes, this is my son; and knowledge: I will love you for the rest of my life and much as I love you now; and fierce, fierce protectiveness: I will kill or die to keep you safe without a moment’s hesitation.

And it came so instantly and so fully on that it nearly took my breath away. I had waited my whole life to meet you, and there we were, finally, face to face.

And eight years later, it’s all still there. I love you each with all my heart, in spite of your constantly trying to get me to declare I love you more, Ethan. Because that’s the wonderful, amazing thing about hearts: they defy physics. We each have only one, yet their capacity for love is infinite.

I can love you, Ethan with my whole heart, with every fiber in my being, and I can love you, Jacob with my whole heart, too, with every atom in my body.

And yet there is fully room there for your father, and for grandma and grandpa, too. (Yes, we do still love people even when they have died, that is where they live on, in our hearts.)

And yet more room still, in that little organ, for all the many others I love and will come to love: dear friends and hopefully, someday, grandchildren (but not too soon, OK?)

So Happy, Happy Birthday my boys, this marvelous journey continues ……

Monday, July 26, 2010

Mourning in the Morning

This morning the sound of Ethan happily playing with his sleepover friend, Sage, would have brought me much happiness, except, except…. it made me cry. Made me cry because I almost never hear this in the morning in spite of Ethan having a twin brother. Because of Autism. 

Ethan is an 8 year old boy: they talk with their friends, play games that involve a lot of conversations, pretending and planning and even their battles are all words. “I am using water smite on you now”.  

And Jacob, he screeches like a monster and throws toys.  It’s not that he’s non-verbal, he talks a lot (actually all the time, but that’s another long post to come), but doesn’t have the ability to keep up with the rapid flow of thoughts and ideas exchanged in typical play.  He can carry on a conversation, IF it’s on his terms, his topic, and Ethan has just not signed up for that job.

Most mornings start like this… Jacob: “Ethan wake up, are you awake, Ethan? Eeeeeethan? Are you a robot? Ethan, are you a robot? Wake up, Ethan! Are you a robot?” Ethan: “SHUT UP JACOB!!!!!  Mom, Jacob is bothering me, make him stop, make him shut up, he is the stupidest most annoying meanest brother in the world!!!!!  Moooooom!”

And some days I am sanguine, take it in stride, separate them (as much as I can in a small apartment), get them (separately) busy, feed them (different breakfasts), get them ready for (their separate) schools or camp and summer school and their (separate) busy days.

And other days it’s hard.  The woulda-been, coulda-been, shoulda-beens bite me in the ass and I mourn the family we are NOT, the family time we just can’t have, the ease of two kids the same gender and age that I see taking place in the families of twins we know and hang out with.

This morning hearing Ethan so happy playing with his friend brings it all back, the dashed expectations: My sons will not be lonely they will have each other. Instead, today Ethan is happy and Jacob is lonely.  Most days they are both lonely, Ethan bothered, angry and Jacob hurt, rejected. And I can’t fix it, I just don’t know how, I feel like a failure as a mother. 

Maybe if I got up at 5 am to get everything ready so in the mornings I didn’t have to be busy, I could just facilitate and scaffold their interactions with each other. But what even then? Ethan would still want to play games whose sophistication is so beyond Jacob, and Jake would still be too loud, too physical, too repetitive for his nimble minded brother, so what then?  They could play successfully for 10 minutes, with me sculpting every moment, maybe, on the good days, and then, back to business as usual for the rest of the morning? And I got up at 5 freaking AM for that? Um, no thanks. 

I read a lot of true and fictional accounts of families with siblings both on & off the autism spectrum, trying to feel not so alone, trying to get into Ethan’s head, figure out how I can help make it easier. And you know what?  They all suck.  

Not because they are not wonderful, they are, especially this one: Rules by Cynthia Lord (who obviously has a kid on the spectrum herself). But because all those boys and girls (and for some reason it’s usually girls) while they may have difficult moments, when push comes to shove, they are unfailingly loyal to their Autistic brothers. Their parents describe them as their kid’s best therapist. And that is so far from happening in our house, I end up feeling worse rather than comforted, and no more clued in to what I can do to turn things around than before.

So, the sounds of happy morning playtime in my house are so rare. They do happen from time to time, when Ethan is feeling generous and happy and Jacob is being calm, his sweet funny self flying free, not frustrated by Ethan’s rejections.  

A few weeks back, on a lazy Sunday morning, they took all their stuffed Pokemon dolls -- I mean SOFT ACTION FIGURES (don’t want to trample boy egos here) -- and brought them up to Jacob’s top bunk, put them to bed and woke them up (Jacob’s oldest and most beloved pretend-play scenario) and had a whopping good Pokemon battle.  

I held my breath, tiptoeing, smiling, puttering quietly around the house so as not to break the magic yet.  Like an amateur juggler holding too many balls, I knew they were going to start dropping soon, but for just a moment they were all gloriously in the air, and all was right with the world.

NOTE: This was actually written 2 weeks ago on July 11th, so that’s the “today” of the post, not to confuse anyone who might have been at my boys birthday party today, actually, and be going “huh?”  I am just so overwhelmed these days, I wrote & then lost this until now, searching for something to throw up quickly to not be completely lame having gone a month without actually posting anything.