Thursday, October 23, 2008

Last Sunday's Fanged Fiends

Our trip to the apple orchard included buying those great waxed fangs, remember the sweet gummy flavor? Ben's friends Tasha (the younger woman) and his pal Alexander and my basketball-bound, 98th percentile little man model them for you in the delicious October sunshine.

Please note Benjamin's campaign button!

Monday, October 20, 2008

It's been a little too heavy around here lately

This morning Ben was sitting on his top bunk bed while I tied his shoes before school. He looked around with his great smile, admiring his carribean blue with white cumulous clouds painted walls, and said, so sweetly, "Thanks, Mom, for painting my room." Yeah, baby, it's a good sky to sleep under and wake up in. But what's even better is you noticed and thanked me. What a sweet kid.

Time for a little thanks from me to sister bloggers whose work sustains me.

I am way overdue in introducing some new favorites in the blogosphere, and I finally got around to updating my links. Please see, to the right and a little lower, Julie Zickafoose's wonderful site. She got a real gift for describing paw paws, kids and birds, but it doesn't stop there. Then, there's Jayne who writes honestly and takes great photos, and who has been a lifeline for me. Finally, don't miss Organic Mama who is always a freath of bresh air (not a typo, a spoonerism, she loves them and salty language, too.)

If it's true that the blogosphere is now our online town square, please follow my lead and visit these extraordinary women. I guarantee you'll find voices to make you laugh, make you cry, and definitely make you think.

Peace to all. Don't let the bitebugs bed.

Saturday, October 18, 2008

Toward a barrier-free heart

It’s been quite a week. Ben spiked a fever Tuesday night and was wakeful all night while it ran its course. Wednesday I had a meeting with Benjamin’s team at school: the teacher consultant, both his pre-school teachers and his occupational therapist. What I heard was daunting. Adaptive clothing to soothe his need for sensory input, his constant movement and challenges. His difficulty with crossing the midline in body movement and participating in group songs or movement. In spite of these things, I also heard that children are drawn to him and want to play, that his verbal skills are so good he teaches the class new words, that he negotiates well when he can hold his anger in check. Sleeping fitfully the night before did not make this meeting any easier.

From there, I picked up Benjamin and went to the pediatric ophthalmologist. While we were waiting to see the doctor, Ben surprised me by writing an “E”. He’s been making a "B" for a couple of days, but I didn’t know he knew an “E.” The eye exam revealed a stunning fact, however, he is far-sighted, and with a huge difference between his right and left eyes. The doc said in kids they sometimes don’t suggest correction, but he said with Ben’s exam, it would not be wise to forgo glasses. He said he really can’t see much up close.
From there we went to the optical shop and picked out frames: unfortunately there is not a model which is unbreakable and unlose-able. That evening, as if the simple diagnosis helped him, my son succeeded in writing his whole name, BEN, on his chalkboard in his room. This was a huge accomplishment, and in fact was an IEP goal for the end of the year!

And then we had a consultation as a follow up with the FAS clinic folks. More evaluations are needed there: the dreaded ADHD inventories came out, then a neurological consult was recommended, and finally a genetics referral. On the way back from that meeting, Ben was talking about Polar Express and said this: “What comes out of Polar Express’s funnel is smoke, actually, not steam, Mom.” He then continued by patiently explaining the dynamics of crossing the track covered with ice in such a way that the “locomotive” did not drop through the cracking ice, complete with hand gestures which would have rivaled the most expressive Sicilian.

Sometimes it’s hard to remember he’s only four years and nine months old.

I have been awash in conflicting emotions, emailing friends about it because I’m too emotional to talk on the phone about it all. I am by turns angry with his biological parents and sad that his first mother was so gripped by addiction to alcohol that she couldn’t stop bathing his developing brain in ETOH. I won’t be able to protect him from ridicule because he is different from other kids, then I realize that’s a projection more about me than him. I endlessly replay the parade of experts we met this week and the counterpoints after each meeting—the gems of Ben-ness set against each frightening diagnosis. He managed to have a very big victory at each time I thought I was hitting bottom, buoying me and reminding me that Being Ben is a mystery which is still unfolding, full of potential and unexpected gifts which defy measurement by the experts.

Benjamin has gifts he was born with which balance the burdens his pre-natal life placed on his shoulders. We are blessed with good friends who gave me realistic and hopeful feedback and support, offering to answer the phone whenever I needed to talk, planning visits to Ann Arbor, reminding me that I need to reach for my own oxygen mask before I can help Ben breathe.

One of those precious friends offered this: “Benjamin has only one real barrier: It’s whatever you know in your heart is beyond him. Everything else is meant to be the markers he will pass over, under or simply go around as he pursues his own goals.”

What I know in my heart is that I don’t know the barrier. Each time I think I do, Ben reminds me that, actually, I know nothing about his limits and everything about how he passes our markers and blows by the lines we draw for him.

The Amazing Benjamin with his art and, of course, a car

"Untitled" and "This is a mountain, this is a village"

Saturday, October 11, 2008

The Road Taken

There was one gift I craved all my adult life. That gift was the ability to give of myself without reservation and to feel, really feel, the complete generous love of a child.

I put it off for one reason or another for many years, not ready yet, I now believe, to claim the gift in any way that would make it a scared gift. There were opportunities, but I was too timid to reach out and take what I so wanted.

When I finally, finally, reached out and received Benjamin into my life I thought that was it, this was the gift, now I had it, this little blob of person-to-be, and the rest was living in the arrival.

I had no idea what he had in store for me. The person he is becoming changes all the time, keeps me guessing and doubting, hoping and rejoicing, fearing sometimes too, feeling both up to the task and woefully inadequate. He keeps me from any feeling at all that we have arrived, but keeps me feeling instead that we are still walking, looking, reaching for each other.

I have to keep reminding myself that being is the key. Listening to his endless questions about the road we are on and trying to answer them truthfully in ways he will understand leaves room for little else other than being.

Coming home from a rendezvous with friends today we left the highway because the highway makes him anxious. It is a gorgeous day, why not take a few extra minutes to take the country road home? We found two farm stands to buy tomatoes, honey crisp apples, butternut squash, gummy bears. Fresh corn and cider too.

When we got home he wanted a cheese sandwich. Why not? Is there really anything better than a glass of cider with a toasted cheese sandwich on a glorious October day?

We both needed a nap. As we crawled under the covers, he took my hand. “You’re a great mom,” he said.

“And you are a wonderful son,” I answered.

I am. He is. We are. Every single moment of every day we have together on this spinning orb. The hardest and easiest thing in the world.

Friday, October 10, 2008

Bumps in the parenting road

Benjamin and I rode in the Blue Water Ramble on Sunday. It was a 30 mile tour, Ben on the trailer bike, and it was great. He did beautifully, really enjoyed it. I whined much more than he did. I'll get around to pictures soon

I am exhausted lately. I am tired of not having any money and Ben having a voice.

Oh, did I really say that? Some days I swear if I hear "Mommy why do caribou eyes glow in the light from the train" again I will scream. Instead I try to answer the same way each time.

Until I cracked last night and said, "Because they are fake eyeballs made in China by children who have to work for a living instead of living in unbelieveable luxury and being able to watch Polar Express three nights in a row!"

He laughed. "Silly mommy, no, really why do . . ."

I drove off the road. I am writing this from beyond the grave.

Fact is I am too weary to even do this artfully, but go to this poem. Read it. Tell me if it isn't just the most wonderful poem or not. Thank you, Poetry Daily. Thank you, Gary L. MacDowell for writing this lovely poem and reminding me that there is life beyond the glowing caribou eye.