Stoned

I just finished reading an article in a July issue of The New Yorker magazine about the medical marijuana industry. Call me naive but I had no idea. I knew that people smoked pot for nausea (remember doing it myself after all-night college drinking) and for pain control with chemotherapy. I also remember reading somewhere that it could help those with epilepsy. I joked then that maybe I should start smoking and just blow it into Sophie's face. It might be because Sophie isn't doing so well right now, and when she isn't doing well I open my mind and my body and every thinking and reactive pore I have to being ready for SOMETHING NEW. Insight, a Eureka moment, hope never dies. You know the drill. I have a sort of half-assed belief in signs and a definite faith that the universe throws signs your way. I have always felt responsible for listening to and recognizing those signs. And I also have a sense of humor, remember?

Anyway, I was reading this article (and I just HAPPENED to pick this particular issue from the stack of issues that I haven't gotten to and just HAPPENED to open it to this particular story) and my mind began whirring. I wonder if these lenient laws in California are for minors as well? Probably not. But why couldn't I somehow find some of the medical marijuana and maybe try it with Sophie? I could bake some brownies or something? I could get some of my pot-smoking friends and we could all smoke it together and blow it in her face? Wouldn't it be weird if THAT WAS WHAT HELPED HER AND SHE QUIT HAVING SEIZURES? These were my thoughts as I simultaneously read the article, and I've been thinking about it all ever since. How different/bad could it possibly be than the 16 drugs that we've given Sophie over the years that haven't worked?

I've been waiting for something NEW, something to keep me going, something to sustain us. And help Sophie. We haven't tried this avenue and I'm wondering....
And if all else fails, Sophie is eighteen years old in only five years...

More Moons

It's my birthday today and I just read this poem and loved it. I'm not sure if it's "legal" to put it into the blog without permission, but if Galway is reading this, I hope you don't mind.

HIDE AND SEEK 1933
by Galway Kinnell

Once when we were playing
hide-and-seek and it was time
to go home, the rest gave up
on the game before it was done
and forgot I was still hiding.
I remained hidden as a matter
of honor until the moon rose.

Dinnertime Musings

The Husband was working tonight so I heated up some leftover chicken noodle soup for Sophie, Henry and Oliver, and the four of us sat at the island in the kitchen and quietly enjoyed our dinner. After about four spoonfuls or so, though, Sophie began to have a cluster of small seizures and it became increasingly difficult to feed her. Her arms kept flying out and hitting Oliver who sits next to her, and then her head would bob and knock the spoon out of my hand. We're all used to it in a way but then again, it's always upsetting, too. The boys generally continue eating and talking and I try not to get frustrated but sometimes resort to a sharp, "Please, Sophie, enough." That might seem cruel because obviously she can't control it, but there is some evidence that we can interfere with the brain wave pattern and almost shake it out of her. It's almost like the sound of my voice, raised, is different enough that the brain is startled out of its repetitive pattern and looks to work differently. At least in that moment. But I hate speaking sharply to her, and really hate seeing the boys exchange knowing glances at each other over their soup bowls. This is their normal and the life they share is, in some ways, a mystery to me. I have the regular worries that all mothers have for their typical children but I also wonder exactly how much and in what ways their lives are affected by their sister. I could write endlessly on what I've read about siblings of special needs children; for the most part, I feel confident that we've done the "right things" in their short lives.

Tonight, Oliver asked, "Are there any special needs people who learn to talk by the time they get older?"

Henry replied, "Definitely. Remember that lady who was blind and deaf and then she learned how to talk? What was her name, Mom?"

I told him that Helen Keller was certainly an admirable woman and that we should never stop hoping that Sophie would learn to talk, but that as long as she had seizures it would be really, really difficult. I said, "I think we should just hope right now that she'll stop having seizures."

Oliver said, "Oh, she will."

He said it with such certainty that I looked up from my own soup and stared at him. I said, "Really? You really think she might stop having seizures?" And he nodded and said that yes, he just thought that, he didn't know why.

I confess here to a hair-raising thrill, felt on the back of my neck and down my arms. Such is hope and despair in our family that the confident musings of a seven year old are enough to light some sparks deep within me. I actually thought in that moment maybe he knows something, maybe he has a premonition and is speaking Truth. The moment passed and I wiped up all the soup that Sophie had spilled. I admonished the boys for once again not clearing their bowls from the table and all was normal.

But the certitide of that little boy is really something. He's smart, you know, and perceptive and who knows. He might know something, right?

I almost went surfing today

One of my oldest friends offered to take me surfing this morning as a birthday present. Anyone who knows me knows my surfing obsession and the fact that I haven't ever actually surfed. When I moved to Los Angeles over ten years ago, I told myself that I would surf by my 45th birthday. Last spring I gave myself six months to lose a lot of weight, get into a wetsuit and go surfing. I had originally planned to have an all-girls' surfing party. Hire a really cute surfer to teach those of us who wanted to learn, invite all my nearest and dearest, go out to Santa Monica or Malibu, surf, have some drinks and really good food and call it a day. I imagined the pounds melting off with such an incentive and I'd finally be if not thin, well, then a little closer to what I looked like, say, when I was thirty.

I didn't lose the weight.

I decided not to have the surfing party because it ended up being too extravagant and another good friend threw me the most wonderful, beautiful dinner party I could ever have imagined. Most of my dearest women friends came and we drank and ate and laughed hysterically for hours. Thank God for friendship. The party was on Thursday night, and everyone there toasted me and wished me luck because my first surfing lesson was for the following Sunday.

Today is Sunday, and I woke up at 6:45 and left with one of my oldest friends, David, to go to Manhattan Beach. I had butterflies in my stomach and felt, frankly, sick about doing it. I really didn't want to do it. I felt self-conscious and not just about my weight. What if I didn't fit into the wetsuit? What if I couldn't get up on the board? What if I fell really hard and it really hurt? David gave me several mini-lectures about going for it, about doing something out of my comfort zone, etc. etc. He was only partly convincing and as we sat on our towels in the sand under marine fog, meaning the ocean was cold, cold, cold, I secretly wished that the surf instructor wouldn't show up.

He didn't show up.

We waited for over an hour and during the last half, I slowly came around. The butterflies had subsided and I felt alive and ready. I was finally going to do it and who cared what I looked like in a wetsuit?! I had been watching what looked like beginners paddling out into the small waves, get up on their boards and balance precariously before falling, and it didn't look too bad. The sun was beginning to peek through the thick layer of clouds, and the lifeguard station had just opened up. I watched him while he did his lifeguard duties and when I lay back on my towel with my eyes closed, the only sounds were the waves and the swish swish of his broom as he cleaned the ramp leading up to his tower. David went up to his car to check his cell phone for any messages from the surf guy, and when he came back and told me that the guy had some kind of lame excuse for not showing, I almost cried.

Am I going to make another appointment for a surfing lesson? Absolutely. Will it be before I turn 45 this Wednesday? Probably not.

And David and I had a great breakfast together, friends for almost twenty-five years.

School

It was Sophie's first day back to school after our two week vacation and I dreaded it. She's in the seventh grade at a less-than-desirable middle school here in Los Angeles. When I was looking for a middle school well over a year ago, I wished that I had made a documentary simultaneously. I would have called it "We Don't Have No Class for Your Mentally Retarded Daughter: My Journey through the Los Angeles Unified School District." The first part of that sentence is a direct quote from an office assistant at one of the more reputable middle schools in LA; in fact, it was our home school, right around the corner from our house. Needless to say, Sophie didn't go to that school, and after much trial and tribulation I found something reasonable.

But it's really only reasonable and certainly no place that I'd think about sending my two boys to. It's in an edgy neighborhood and has very low ratings (meaning the children test very poorly). Over 90% of the kids are from "disadvantaged" homes, and Sophie appears to be in the extremely tiny minority of children who are non-Hispanic. The facilities are clean but distinctly old and shabby. To top it all off, the school is on a Track B schedule which means that it's year-round, a cockamamie solution to LA's lack of facilities for school-age children. Sophie goes to school for four months and is then off two, then four more months and then off two. It's pretty disruptive but was really my only choice.

I basically had to "settle," and not a day goes by that I don't think about it and feel vaguely and sometimes resoundingly dissatisfied. . One of the things that I've struggled with over the years is Sophie's social isolation, the fact that she really has no life or friends of her own, other than those imposed upon her. Or so I thought.

The kids in Sophie's class have mild to severe disabilities, Down Syndrome, mental retardation (they still call it that) and autism spectrum disorders. Sophie is the only one who can't talk and actually needs the most assistance.

So when I walked Sophie into the bungalow that houses sixth, seventh and eighth grade special needs kids, I wasn't expecting anything. But what happened is that as soon as we walked through the door, EVERY SINGLE CHILD IN THE ROOM (and there are ten of them), turned around or stood up and pointed at Sophie and smiled and exclaimed in their loud, semi-verbal, developmentally disabled voices, "SOOOPHIE's HERE! SOOOPHIE's here!"

They were not just happy to see her; they were thrilled. They MISSED her! And she stood there and looked at this small crowd and smiled and hummed. It was all I could do not to burst into tears myself. This humble school and these children were filled with warmth and love today and it all spilled over onto us. And I am grateful for that.

The Marathon

This post risks being incredibly cliche, but I'm having a go at it anyway. Henry and I watched the women's Olympic marathon tonight, and while he prattled on, asking questions that I distractedly answered, Sophie had a seizure. She was in her room, already in bed, so we raced down the hall and into her room. She was in full tonic posture and groaning loudly. Henry stood in the shadow of the doorway while I kneeled on the bed over her. It lasted for well over one minute, perhaps even more than two minutes and she uncharacteristically groaned throughout. Henry asked, "Is she all right?" and then when I told him, yes, he went back to the marathon. When the seizure ended, I tried to make Sophie comfortable and then lay down next to her for a few minutes. Those are the minutes where my own adrenaline subsides and I say prayers or cry or just lie there and think dark thoughts.

Here's the cliche: it's a fucking marathon, these seizures, and Sophie is the runner.

When I joined Henry in the living room, the Romanian woman Constantina was still plugging along, well ahead of the pack of runners behind her. It looked to me like she was running at a constant breakneck speed and at times her arms were sort of flailing and I felt almost disgusted by how unnatural it all is, right? It looks so painful, at least for some of the women, and Constantina didn't look happy. But she did stop flailing when she saw the stadium and when she ran inside and the crowd roared, I wanted to cry. Henry just said, "Wow," and we sat there and watched her run her victory lap.

Thai Massage

My good friend Limor offered to take me to get a Thai massage today and I reluctantly agreed. I love massages but I've never had a Thai one, and I admit to understanding them only in the context of young men in corrupt cities with thirteen year old prostitutes and "happy endings." But Limor told me the place was fantastic and very cheap. She drove us almost to downtown, and when we pulled into a parking lot in front of a divey-looking building, I felt nervous. Inside, all was serene and quiet and Asian spa-ish, and we were both led down a long hallway lined with silky curtains. My masseuse pushed curtain number four aside and whispered to me to take off all my clothes. She gave me what looked like pajama shorts to wear and stood outside the door, waiting for me to lie down on the floor, on top of a mat. Surprisingly comfortable, I settled in while she placed various towels and rolled up things around and under me, and when I turned my head to the side, she began pushing and rolling up my back. It hurt at first and then it stopped hurting, and I'm not sure how someone so small and quiet could work so magically, but I relaxed enough that I was almost asleep. Music played faintly and I could hear the soft murmurings of other massages, curtains away.

And so it went. I sat up at the end and she wrapped hot towels around me. I dressed and walked out of the little room to see Limor waiting for me.

"All my troubles are over," I whispered to her.

We paid the ridiculously low price of $40 each and walked out of the spa and across the street where we had a $6.00 lunch at the corner Thai restaurant. I had chicken with mint and tiny little egg rolls.

Happy endings, indeed.

She in There, She Know

It's so difficult to get a really good photo of Sophie, but I took this one last week in Hilton Head. She generally doesn't respond and look at the camera when I ask her to and her eye contact is intermittent at best. But here, she's actually looking straight into the camera, and doesn't she just look beautiful? Her beauty is in the eyes, their deep expression. This kind of glance isn't hard to get when you're actually with her. Although her eye contact comes and goes according to her seizures and how she's feeling, when it happens those deep brown eyes are like pools that you can just about drown inside of. She's looked at me that intensely many times, and I have to believe that her indomitable soul is free in that moment, completely aware and intelligent.

I took Sophie many years ago to a Chinese woman who practiced acupressure. Her office was in her home in the mid-Wilshire area, an innocuous white apartment building with absolutely no character. I don't remember this woman's name but I remember that she was a funny and stubborn woman who made strong pronouncements against Western medicine and who at one point told me, "you really good mother. I couldn't do what you do. But you need to calm down." Anyway, during the first visit, she asked, "Does she talk?" When I told her that no, Sophie was nonverbal, she asked, "How old Sophie?" I told her, "Five." She quickly exclaimed, "Five! No talk? That's late!" I remember thinking good Lord, Sherlock, we have a problem here. But I was always willing to try anything new that might help Sophie, and I had heard wonderful things about this woman.

Anyway, it wasn't long after that this doctor took my hand and said, "She in there, she know."

The story has been told a hundred times, and the phrase used thousands of times. This photo, to me, is evidence. I know it, too.

Flying the Friendly Skies

Has everything already been written about the nightmare of flying commercial? Maybe so, but my trip home from Hilton Head last night is at the very least worth a blog posting. Actually, the way I got through what I'm going to write about was by thinking this will make a great blog post.

Carmen and I left the Savannah airport with the three children at around 5:30 pm. We had only a short flight and then an hour layover in Atlanta before we boarded the next plane to Los Angeles and home. As I've mentioned before, travelling with Sophie isn't too easy. We put her in her stroller/wheelchair so she doesn't have to walk so far in the airport, but she always has to be thoroughly patted down and checked by airport security. We didn't have any problems in Savannah other than the confiscation of Henry's jar of gourmet chocolate peanut butter. He burst into tears when security told him it was an infraction and then casually tossed it into the nearest garbage can. "I hate those people," Henry told me tearfully, "they're stupid. Why would I put a bomb in the peanut butter?" Sigh.

The trip to Atlanta was uneventful, but when we landed we had to dash to a different terminal to make our flight to Los Angeles. If you've ever been in the Atlanta airport you know how vast it is and how odds are you'll always arrive at the end of the terminal, at the last gate. Despite this, we were able to board the plane early and made ourselves comfortable toward the back of the plane. I'm telling you these boring details to mainly illustrate the boredom of flying, the methodical way one has to make one's way through the airport, and the hardship of all of it on Sophie.

When the plane was loaded up with several hundred people (and we always seem to fly on completely full flights), the pilot came on the loudspeaker and informed us that we were flying a "fallen soldier from Iraq" on the plane with an escort, "to his final resting place." He also threw in a couple words about "paying the ultimate sacrifice," "fighting for our freedom," etc. etc. We were told that when we arrived in Los Angeles, we would be expected to remain in our seats, even when the seat belt light went off so that the escort could leave the plane and begin the proceedings for the dead soldier's removal from the baggage hold. It was sort of hard to hear all the particulars, but there was enough said that Henry and Oliver grew sombre over the thought of a dead body somewhere below us. I can't say what I felt. I'd like to say that I felt sad or even moved. But I didn't. Or at least all the stuff about "ultimate sacrifice" and "fighting for freedom" made my stomach turn. I can't express that sort of doubt and cynicism, though, to my sons, so I quietly explained that the soldier had died in Iraq and was going to be buried in his home cemetery.

When the plane landed, the pilot came on the loudspeaker again and told us that if we looked out the windows on the left, we would see fire engines lined up outside that would be spraying the plane with water. At first I didn't realize that it was some sort of ceremony and had the fleeting terrified thought that it had something to do with chemicals, etc. etc. (That would be my Debbie Doom side coming out). As the plane slowly taxied in the darkness and the water splatted on the windows and wings, the normal bustle that marks the end of a long flight stilled and the whole plane got quiet. When we came to a full spot, somewhere up in front, a young man stood and was led out of the plane by the pilot. Everyone clapped and then we all sort of sat there in the quiet for a few minutes. The seat belt light dinged off and the mad rush to get out of the plane began. Since we were at the back, we had a while to go before we actually got to the jetway, but when we finally did, Sophie's stroller had not been brought up. She was having seizures, tiny ones, but enough of them to make it really difficult to walk, and I was trying to support her while Carmen shepherded the boys. We stood and waited for the next several minutes, until every passenger had gotten off and then watched as the cleaning people swarmed in. A flight attendant asked me what I was waiting for, and when I told her that my daughter's wheelchair had not come up from the baggage hold, she whispered to me, "Oh, I think it's because of the DEAD soldier."

By this time, we had been on the road, or in the air, for over nine hours. It was well after 1 am, east coast time and we were all exhausted. Sophie was a wreck and could barely stand. I tried at first, I really did, to remain patient. I said that I understood about the DEAD soldier, but that if I couldn't get the stroller right now, I at least needed to know about how long it would take to get it. The flight attendant scurried away and we waited some more. When I poked my head around the corner, back into the plane, I saw a line of uniformed people who I gathered were flight attendants, cleaning personnel and pilots lined up in the window seats of first class. All had their faces pressed up against the window and some were dabbing at their eyes with tissues.

I'd like to say that I felt bad, too, but the fact is that I didn't. I know this was some sort of historic moment, a sobering experience as an American. But I didn't feel ANYTHING but annoyance that I had to wait for Sophie's wheelchair. The thoughts that raced through my head that I thankfully didn't voice were along the lines of: This young man is dead FOR NO REASON. He volunteered to fight in this stupid, tragic war. I can't believe that I am supposed to somehow honor him NOW, when he's dead. I was back out in the jetway now, still holding Sophie up, under her arms, letting her rest against me. I leaned back and bent my face into her soft, curly hair. I closed my eyes and began to think that this soldier, this boy, was dead and that he had a mama and a father and perhaps a wife and a child and that as his body was rolled out of the same hole that housed the baggage of vacationers, they would be there, grieving. I let go of all the banalities of patriotism and melted into patience.

And then it was over. We got the stroller and straggled down toward baggage claim. I was going to write about the fight my middle eastern taxi driver had with the airport security (he got out of the van, raised his fists, screamed obscenities and I honestly thought there would be guns drawn) but that would just be too much. As my writing friend Sam Dunn likes to say, "You just can't make this shit up."

Hope is a Holy Ghost

I just read that line in a poem by Tony Hoagland or I'm paraphrasing it. Loved it.

This morning, I took a walk on the beach with my youngest son Oliver. He's seven and wears his emotions precipitously close to the surface. I worry, sometimes, about him, at once marvelling at his quick wit and horrified by his lack of self-control. He had warred incessantly with just about everyone yesterday and last night, so this morning I thought a little quiet time together would be good.

And it was. We walked far along the beach at low, low tide, skirting dead jellyfish that were washed up and picking up tiny stripped clean seashells. An enormous storm last night had left the beach rough, but the sun had just risen and dolphins were arcing out over the water while pelicans dashed into the waves, picking fish.

"Let's talk about our five senses," I said to Oliver. "What do you feel on your skin?"

"I feel hard sand under my toes," he replied, "and shells in my pockets."

And so it went and we were finished with touch and smell and taste (we licked the shells and dipped our hands in the water) and hear and see. Then Oliver, said, "There's one more sense, and that's feeling." I told him that I thought we'd already covered that and called it touch.

"No, feeeeeling," Oliver said, drawing out the vowels. "You know, like what's in your heart." My heart stopped, of course.

"What do you feel?" I asked.

"I feel smart," he replied, "and quiet and peaceful. I feel hope."

The Unspeakable

It's taken me almost two weeks to write it, but my new friend Vicki Forman's (little boy Evan died unexpectedly just before his eighth birthday. If you don't know her, Vicki is an incredible writer and advocate for the special needs community. Her writing is beautiful, inspirational and always honest. Evan was a micro preemie and had several serious disabilities, including seizures and blindness, but he was full of happiness and life and love. I never met him but knew from Vicki's writing that he was an excellent musician, loved swings and had a brilliant smile. I found out that he had died when I logged online after a grueling trip to the east coast. It was around midnight east coast time, and it was the first email that I received from a mutual friend. "My God," was all I could think. And I thought it all night as I lay next to my own special needs daughter. I've been thinking it off and on for two weeks now, marvelling at Vicki's ability to continue to write and even inspire a huge community of parents of special needs children. We are a tribe in many ways, bonded one to another by much that is unspeakable. I know that I look over my shoulder daily, nightly, at the spectre of the unspeakable. I whisper about it to my friends who have children like Sophie and not like Sophie. Evan's death, though, is not about me or about Sophie.

I have two typical children and I know that when I hear of a too-early death, I clutch them closer, grateful that mine are here and now. All parents know this conflict of relief and great understood sorrow. It's different, though, for those of us in the special needs community. When one of us is lost, we all grieve differently. There is no relief. Evan is gone and we perhaps don't know, yet, the sorrow of Vicki and her family, but we are closer to having an inkling. I am hard-pressed to articulate this and fear presumption. I am humbled by this woman and her family and their grace.

Contributions in memory of Evan Kamida may be made to:
The Pediatric Epilepsy Fund at UCLA
Division of Pediatric Neurology
Mattel Children’s Hospital at UCLA
David Geffen School of Medicine at UCLA
22-474 MDCC
10833 Le Conte Avenue
Los Angeles, CA 90095-1752

Dark Night of the Soul

I like to say that there are two things that sustain me. A hodgepodge belief in a Creator and a sense of humor. An ability to see the absurd in just about anything truly horrifying is really what keeps me going and I figure it's a blessing from the Creator.

I got out of bed the other morning and went downstairs to get a cup of coffee. We're still in Hilton Head, and I've been sleeping in what is usually considered the plum bedroom. It's the only one upstairs, and it's the quietest. It has a king-sized bed and its own bathroom. It's usually reserved for whoever is pregnant or whoever has an infant that needs a place to nap. But I insisted that this year I get the room upstairs because I was coming on the family vacation without Michael and had to bring Carmen, our long-time babysitter to help me with Sophie. Because we have seventeen or so people staying in this house, Carmen and I would bunk together with Sophie in the big bedroom upstairs.

When I walked into the kitchen, my father was the only person around. He asked me how my night was, and I almost said, "Oh, you mean last night when I became an atheist?" But I didn't. I just asked for a cup of coffee.

This is what happened last night. Sophie never travels well, and this vacation has not been an exception. I don't know if it's the distance travelled, the traveling itself, the time change, the humidity, the changes or what, but she has been a disaster the past week, especially during the night. She wakes numerous times with big seizures and then falls back asleep before waking again and having what are clusters of jerks and kicks that can become violent and are always upsetting. On the night in question, Carmen and I did our best to manage these clusters. We'd keep clear of her flailing limbs and stroke her gently, telling her that all was all right and that she'd feel better. Relax, relax, we whispered in the dark. Over and over. In between, Carmen and Sophie fell asleep, but I lay on my bed in the pitch dark, my thoughts dark and swirling in my head. I forgot to mention that when Carmen fell asleep she would almost immediately begin to snore. Loudly. Like a truck driver, her head thrown back over the pillow. The air reverberated with the sound, and if there's anything worse than a seizure in the night for me, it might be snoring.

I lay on my back and at first tried to summon all the meditation skills I know, the idea of meditation itself, the mindfulness, the non-judgement. I tried to just notice the sound, be mindful of it and the night and everything in it, but everything eventually just became too much and all that I knew flew out the door and disappeared and what was left was a dark night of the soul. Once I let it in, the thoughts came relentlessly: I hate my life; I hate Sophie; She has ruined my life. She might die. So many kids I know with special needs die young. Why can't I just enjoy her, now, even though it's night. I'm a horrible, evil person and my life is ruined by all of this. I don't believe in anything.


But I must have fallen asleep, because when I opened my eyes, it was morning and I was alone in the room. Light came through the blinds and lit up dust motes over the bed. The blanket was pulled up to my chin and the pillow was soft, perfect, really, under my head. The only sounds were muffled ones from below and the air felt sultry. I lay there, alone, and the details of the night before came creeping in. Gently, they crept in, but when I really thought about them and about my reactions to them, I felt almost embarrassed. The morning light dispelled the night so simply. The fears were gone, really. When I sat up, my feet felt good on the scratchy sea-grass rug, and I wrapped my pink linen robe around my waist and headed downstairs for coffee.

Where's the humor in this, you ask? I'm not sure. I don't know why the new day brings with it --- well, a new day. The night is sort of excised. I know that I will tell my friends that if I had had a gun that night, when Sophie seized and Carmen snored, when I rued my life and the fact that I was sleeping with a nanny and my disabled daughter, I might have shot them both. And then myself. You might not think this is funny, but I do. And like I said, it sustains me. For the day. For today. For almost any day, full of light, and dust motes and a cup of coffee.