The Year of Living Hopefully

First of all, if you haven’t read the book The Rosie Project, I suggest you march yourself down to your local bookstore for the paperback or click on over to Amazon for your Kindle version. My friend suggested it to me last year (well, actually she put it in my hand at the school book fair and commanded me to read it). And I have now read it twice.

The protagonist is Don, a just-turning-40 Australian professor of genetics who determines, despite his life-long belief that he is incapable of marrying, that it is time to find a wife, and he embarks on a science-based “wife project” to locate his perfect mate. His few friends know he has Asperger’s, but despite clear evidence pointing to that conclusion, including a few strong suggestions by his friends, he hasn’t ever connected to the idea. He knows he has social challenges. He is stereotypically logical and rigid, a Sheldon Cooper-like character (from The Big Bang Theory tv show), but with a little more charm. But he quite capably manages his daily life.

After a number of wife-project dates fail, he meets Rosie, a young lady who’s clearly not his type: a fun, tough-talking barmaid (think Jennifer Lawrence, who will in fact play the part in the upcoming movie). SPOILER ALERT: After the two work together on a secret genetics project (trying to figure out who biological her father is), they fall in love. A happy ending with, of course, some roadblocks along the way. And a lot of hilarity, mostly resulting from Don’s unusual behavior. Along the way he becomes a master of mixology, learns to dance, and even begins to adjust his schedule for the benefit of Rosie.

I’ve loaned this book to many friends, all of whom returned it about three days later with a very big, “Thank you. I loved it!”

Parts of the book are sad, as we see Don trying always to do the right thing, but often missing the mark really because of a chasm between his sensibilities and broader social expectations. He just doesn’t get it. But in the end, he is happy.

Then came the sequel, The Rosie Effect. It begins with the couple having moved to New York, and shortly after the story commences we discover Rosie is pregnant. Don has been told quite specifically that he’s not father material, so his reaction to the news is less than enthusiastic. The book chronicles his misguided efforts to become a supportive partner, to learn how to be a father, to participate more in the process. He has loyal, caring friends who give him advice, but here’s where the book lost me: his friends have a profound understanding and acceptance of Don just as he is. They are rooting for Don and Rosie. But the advice they give him is just too nonspecific, so he follows his own interpretations of their suggestions and goes so far as to get arrested for observing children on a playground because he doesn’t understand how he might be perceived. He is so afraid to cause Rosie any stress (friend’s advice!) that he creates a web of lies to protect her from this little tidbit of information.

It was frustrating. And it was sad. Rosie had apparently decided on her own to have a child and eventually decides her husband isn’t going to suffice, so she plans to return to Australia, leaving Don behind.

That funny book just got way too real. And sad. The second half of the book I held my breath, preparing myself for a less-than-satisfying end. “They’d better not split up,” I said out loud, “or I’ll be VERY ANGRY.”

The end of the book is somewhat hopeful, but by no means was it tied up in a nice pretty bow. Normally I appreciate a complicated ending because life really is complicated. But this time I wanted it to be a cheesy-happy picture, with an unlikely family and a man with Asperger’s who could find fulfillment as a husband and father and still be himself. I wanted it. I needed it. But that’s not what I got.

What I got, though, was an interesting conversation today. I’ve become a bit of a Kindle addict, which is incredibly convenient, but if you only buy books online you miss out on the personal touch of your local bookseller. So at the suggestion of my therapist, I stopped by our nearby bookstore for recommendations. I needed something funny after what I thought would be a light book (followed by an even darker but beautifully written book, Everything I Never Told You–so good but so sad). This stressed out mom needs some laughs.

So in my usual over-sharing way, I asked for a recommendation and then proceeded to tell the woman helping me about the last two books I had read. She, too, had read the Rosie books and actually quit in the middle of the sequel for a bit because it was too heartbreaking.

“It was sad for me because I have a teenage daughter with Asperger’s,” I explained. She nodded as if she understood.

“People get so caught up in labels,” she said. “But everyone is different. They all have such special gifts to give the world.” She was so sincere, and I may have even caught a glimmer of a tear in her eye. There was something very powerful in her speech, as if it was coming from somewhere deep inside, somewhere beyond just an intellectual understanding. A personal experience? I don’t know. She didn’t say.

She went on to give me what first seemed like advice. (You have to let your kid be who they are. You have to find out what they’re interested in, etc.)  I’ve heard it all before. I know it all deep in my soul. And you all know how much I love unsolicited advice about parenting my autistic kid. I felt my guard go up a little at first, but then I quickly pushed it back down. It seemed as if she wasn’t so much telling me what to do, but rather speaking to the world: This is how we should treat people with autism because they are valuable. 

And then I was grateful. We made a connection. She understood me. She understood my kid, even though they’ve never met.

It was time for me to leave for my next appointment. I reached the door and turned to ask her name.

“Colleen.”

“Thank you so much, Colleen.”

“What’s your name?” she asked.

“Chris,” I said. “It was nice to meet you.”

And it was. I didn’t like The Rosie Effect especially, but I got something out of it. I made a connection. And for that, I am grateful.

Parenting a child on the spectrum is such an interesting experience. So many surprises and mysteries and moments of exhilaration and joy mixed with sadness and hopelessness.

Last week we went to Mexico for spring break. It was a much needed week of rest and relaxation, my time spent primarily swimming and reading, and lounging and playing board games, sprinkled with poolside margaritas, highlighted with panoramic views of sunsets over the Pacific and a luxurious evening at the hotel spa.

Without the stress of the mornings to set the tone each day, I was able to focus on Maddie, in particular, in a much different way, without frustration or fear or anger. As a result, I witnessed a number of fascinating moments.

My kids are savvy travelers. We took our first big trip when they were two and four, all the way to the Caribbean, an unavoidably long, three-leg trip that always seems to last just one airport too long. I do not miss the travel requirements that come with two small children–the massive pile of equipment and the two-month process of trying to determine and acquire everything I could foresee we might need in case of an emergency. Nowadays, I provide minimal supervision for the kids’ packing and they’re responsible for carrying all their own stuff. It’s great. I get to relax and enjoy the flights.

This trip was especially easy because it was only one three-and-a-half hour flight. One flight, two airports. Just immigration and customs to get through.

But first, the flight. Everything went as smoothly as possible. An on-time departure, minimal turbulence, an exceptionally smooth landing. As I always do when traveling to warmer climates, I’d recommended Maddie wear a comfortable dress and leggings, so it would be easy to just take off the leggings upon arrival. She’d be ready for a hot day in Mexico.

What I forgot to remind her was when she should remove her leggings. Upon landing, as the passengers all stood up and retrieved their bags from the overhead bins, I noticed a woman (whom I happened to know) looking down toward Maddie. And then I saw why: Maddie was sitting in her aisle seat removing her pants, dressed hiked up to here, without a care in the world.

“Maddie!” I whisper-yelled from the row behind. “You can’t do that here!” But then I saw her pants were already at her knees, so the iffy part was already over. She might as well finish, I thought, slapping my head in disbelief. Maybe I don’t have to get Maddie to school for a week, I realized, but I still have to monitor her behavior.

Just a few days before, Maddie had dazzled me with her social acumen. We were at the podiatrist office to get her new orthotics. Dr. R is a tall, gentle man who does very well with Maddie. He had inserted the orthotics into Maddie’s shoes and watched her stroll down the hall. He then explained how she should proceed with a slow adjustment period and told her what she might expect to experience in her feet and legs. Finally, he said, “Do you have any questions?”

“Yes,” answered Maddie, and then she paused for a few seconds. “Actually I don’t have any questions,” she said. “I just wanted to make you feel better.”

Dr. R laughed a little and said, “I appreciate your empathy.” Clearly he gets her.

And I was blown away. Although her perception of the situation didn’t exactly match up with reality, her perspective taking and compassion were spot on. How kind of her to try to behave in such a way that would only benefit the other person, even though she couldn’t quite close the deal.

And then she takes off her pants in the middle of a plane. Head slap!

The next day we were well into vacation mode, which primarily involved hanging in and around the pool. Upon spying a very tiny baby with her young parents, I struck up a conversation with the baby girl’s grandmother. We talked for a few minutes, and then my kids swam up so I introduced them. When I mentioned Maddie’s grade, the woman (a retired teacher) remarked, “So it’s almost time to start looking at colleges!”

I paused, not quite sure of what to say. Then I smiled, put my hand on Maddie’s shoulder and said, “Well, we’re not sure what the plan is for Maddie yet.”

And then Maddie chimed in, “Yeah, I might take a gap year.”

A gap year? A GAP YEAR? How does she even know what a gap year is? I happen to know her social group doesn’t really talk about the past or the future, not even about what they’re doing the following weekend, or about the basketball game the night before, who’s going to prom, or where they are about to go on vacation. I’m quite sure nobody is sitting around discussing their post-high-school plans. Not this group.

So I was stunned. What a response from my so-often socially immature child! She understood the conversation on an advanced level: what was expected and how she could participate in a way that would be understood by this stranger without having to divulge her different situation.

Later I asked Maddie about the “gap year” comment.

“Do you know what gap year is?”

“Uh, kind of.”

Okay, she didn’t know what it was but she knew it was an acceptable explanation for why she was putting off college.

“Well, it’s when you take a year between high school and college and do something, usually for educational purposes. It’s organized in some way. You don’t just sit around doing nothing.”

“Oh.”

“Were you thinking you would sit around and play Minecraft for a year?”

“NO,” she insisted, indignantly.

“Oh! What would you want to do?” I asked. I really wondered what she might want to do with herself. My mind started to wander, and then:

“Make swords,” she suggested.

And there it was. Back to reality. Sure Minecraft is a ridiculous thing to do for a year, but making swords? Oh, hell yes. That’s perfect. And why wouldn’t I think so?

About halfway through the trip, Maddie developed flank pan. She kept pointing to her right side, just around the back. She was pretty uncomfortable. But since she didn’t have any other symptoms, I went with the theory that it was a muscle strain and encouraged her to rest, hot tub, float in the pool, and take ibuprofen.

The third day of her discomfort, she was scheduled to go on a zip-line adventure with my husband. To my surprise, she was highly motivated and got dressed and headed out at the scheduled time. She had never been zip-lining before, but she has a strong sense of adventure and a low level of fear, so she was pretty excited about it.

Unlike her mom, whose one and only zip-line experience was solely survival-focused, Maddie swung herself around and dangled her arms and volunteered to leap first. (I spent a lot of time hugging the trees.) She ended the adventure with a water slide, which I didn’t fully understand until I saw the video just yesterday. There she was, perched at the top of the slide, preparing to launch.

“Just wait,” said my husband as I watched in anticipation. And then she did it, she released her hands and slid about ten feet, at which point her body flew off the end of the slide for about a 20-foot drop into the river below. To me it might as well have been a hundred feet. Too far. Too high. Too deep. No way.

If there is one regret I have about my young life, it is my lack of adventurousness. A lack of bravery, you might say. And you would be right. So guided by fear. Fear of the unknown, fear of getting in trouble, fear of failure. And fear of heights, I suppose. So to watch Maddie so readily throw herself into new experiences fills my heart with joy. I’m not so much proud as I am straight-up happy for her.

The day before her adventure we had planned to go into town (about a 20-minute cab ride) for browsing and dinner and just taking in the culture. But Maddie had an online “date” with a Minecraft friend, and in the spirit of spring break (and my wanting it to be a real vacation for everyone), we agreed to let her honor her commitment and put off our town-visit until the next day.

What a stupid idea (not the putting it off part, but the next-day part). After a four-hour outdoor excursion, involving a fair amount of climbing in heat to which we Marin-folk are thoroughly unaccustomed, it was just too much for Maddie to do anything but lie flat on her bed.

But she had been optimistic in the morning, so when she and my husband arrived back at the hotel, we were all ready to go out. And then Maddie crapped out. Which was a problem. All the adults wanted to go, and there was no way I would leave her alone at the resort while we went into town. It’s one thing to dine at the adults-only hotel sushi restaurant while the teenage kids have room service. It’s quite another to separate ourselves by 10 or 20 miles. In Mexico. Where we know no one.

So my son took it upon himself to convince Maddie to join us. (The previous night my husband and my niece had eaten sushi at the fancy place while I had mac and cheese room service. I wasn’t really up for that happening again.)

My son’s powers of persuasion are strong in general. He’s clever and passionate and relentless. And he has a way of relating to Maddie in a way only he can.

So after an hour of back-and-forth conversations, Maddie got dressed. Her sole motivation was the possibility of visiting a cat in an art gallery we had visited on our Mexico trip two years before. She was exhausted and kind of sad and that cat was going to cheer her up, dammit. So I managed somehow to figure out the name of that art gallery, and we all piled into a taxi. When we arrived, the door was chained closed. It was a bit early for closing time, but there it was, clearly closed. We peered inside and decided to come back the following day, and then a Spanish-speaking-only man showed up to let us in.

We looked for the cat but it was nowhere to be found. Maddie asked the man about the cat, but he didn’t have a clue what she was saying until I managed to ask, “El gato?” He looked confused and then exclaimed, “Freida!” Then he shook his head. Clearly Freida the cat didn’t live there anymore. Or live anywhere, I guessed.

Maddie was crushed. But at least there was her answer. We looked at the art for awhile and then left for the boardwalk to visit a shop where my husband had purchased a piece of art on our prior visit.

Maddie and I walked across the boardwalk to sit down and look out over the Pacific while the others perused the shop. She was feeling pretty bad, but I hoped the focus on the water and the setting sun would calm her. I pulled her in close to me for comfort, and bonk! off went her hat over the edge onto the rocks below. It happened to be a Puerto Vallarta hat, easily replaced at any number of shops within our sights, but in typical Maddie fashion, only the hat sitting down on those rocks would suffice.

It was too far down below to jump and retrieve the hat, and the waves, although small, were coming up too far for my comfort. I was adamant that she not go down there, even though I could see that about 100 feet up the boardwalk there was a staircase allowing easy access. She was getting agitated, and then angry, and then defiant, and then determined.

So she marched down and retrieved her hat. I couldn’t stop her. It was all fine in the end, but her rigidity certainly came into play in that moment. So did her lack of stamina. Sometimes she’s so insightful and mature. Sometimes she’s very, well, autistic. And this was one of those times.

It was then that the group split up. Maddie’s meltdown was coming full circle, so my husband took his turn with her and they returned to the hotel while my niece and my son and I had a very late and quite lovely dinner out. (And it would have been a disaster to take Maddie there. All very sophisticated, inventive Mexican food. No tortillas and no guacamole. No pasta. No fries.)

The next day we spent the morning swimming before my niece Rachel and I headed back into town for a little stress-free shopping. We had a mission–to find the beautiful embroidered dresses that I associate with Mexico but had yet to see either on a person or in a store. When we arrived home in the evening, my son promptly informed me that Maddie wasn’t feeling well. She was in bed covered in multiple blankets because she was freezing. It was 90 degrees all week, and with the air conditioning off, I knew there was only one explanation: a fever.

I rushed in to see her, and I felt her forehead. And it was on fire.

And then my heart sank. This poor kid had spent the last three days trying to participate as much as she could all the while having–probably–a kidney infection. Flank pain and a raging fever equals kidney infection, right? The jury is still out on exactly what she did have (long story with lots of details you all don’t need to know), but the fact is she was sick. And in pain.

And yet she zipped between the trees and flew off a water slide and climbed and climbed in the heat. She tried to please us by going into town. She swam when she wasn’t feeling great. She even stuck to the agreement she’d made with her brother at his request: when given the choice between spending time with the whole family and playing Minecraft on this vacation, she would also choose family time.

What a tough kid. What a loving kid. Frankly, what a bad ass.

Maddie surprised me so many times on this vacation. Surprised me with her insight and social intelligence. Surprised again by bringing me back down to earth. Surprised me with her toughness and kindness. I don’t know why I was surprised. She has always been equally strong and kind. I admire her so much.

She’s feeling much better now. Hopefully tomorrow I’ll get the definitive answer on the source of the flank pain and fever.

But one question remains: Whatever will she do for her gap year?

 

 

 

 

 

 

 

 

 

 

 

 

 

 

After the infuriating events of this morning, I went back to bed. And then I feel asleep. And sleeping was so nice. I didn’t have a single bad dream and real life wasn’t actually happening to me for a whole hour. So peaceful!

Then I went about my day as normally as I could, trying not to be too much of a drag for the people around me. My friend took me out for a nice, long taco lunch. I forgot about my troubles for a minute or two.

When I returned home this afternoon, Maddie was in the kitchen making herself some pasta.

“How are you?” she asked.

“Okay. How are you?” I asked without a lot of warmth.

“Fine!”

And indeed she was fine. She had no “cheeks,” her stomach felt fine, and she appeared rested.

“So, why did you not go to school today?” I ventured to ask.

“I don’t know,” she said, somewhat regretfully. (As in, “I’m really not sure what the hell I was thinking.”)

“Well, you’re going to school tomorrow.”

A nod in agreement. Not exactly the remorse and/or enthusiasm I was hoping for, but it was a start.

She still is in possession of her phone. She made sure of that. In fact, in order to motivate her to shower (which I desperately wanted her to do), I had to promise I wouldn’t take it while she was in there. Fair enough. I wanted her to clean up. And I want her to trust me.

I didn’t say I wouldn’t take it later, though.

You are probably thinking, Well, you’d better take it since you said you would!

And in a way, you’d be right. What are threats of consequences without the follow-through? They’re stupid and pointless, that’s what.

On the other hand, if I take her phone away, then I no longer have leverage. And I really need leverage. That is the problem. Leverage isn’t a sometimes/weekendy/bad-day requirement. It’s a bi- or tri- or quad-daily requirement, and there just aren’t many ways to have leverage with her. So far we’ve addressed the phone and sleepovers. There are a couple of other electronic devices, but then that’s it.

So, let’s say over the next day or two she ends up with no phone or TV or sleepovers. Then Thursday morning comes and she doesn’t want to get up, and then what do I do? Nothing. Cuz I’m screwed. And I’ve done it to myself.

Also, the idea of the carrot and/or stick system is that you will hopefully influence a change in behavior. It’s not for fun, that’s for sure. Do I like punishing my kid? No, I do not. Not one bit. So if a carrot doesn’t work and a stick doesn’t work–like, ever–what is the point?

The point is, for me at least, that I’m trying something. That I’m not just a doormat hoping something will change and shrugging if (or really when) it doesn’t. The outcome might be the same (Maddie does what she wants and I go back to bed, defeated), but at least I will have tried to do something.

At my Thursday morning therapy session last week, my wonderful psychologist (also life coach and cheerleader) said this about my parenting: The success is in the commitment that I have to parenting. The achievement is the trying.

Well, thank goodness for that. If trying is what counts, maybe I deserve a medal. If commitment is what matters, where the heck is my Nobel prize? Or even a really high-quality chocolate bunny? I would accept that (although jewelry is better).

So that was a good life lesson. The achievement is the trying itself. 

Here’s another lesson that really hit home today after the phone swipe and stand-off in the driveway:

If my head hasn’t actually exploded by now, I think it’s safe to say it’s just not going to. 

HEAD

It’s Day 3 and things seem to have settled down. The electrical shock-type sensations that plague Maddie have largely subsided. She says she’s gone from a ten to a three. That’s such good news.

The bad news is I’m not entirely sure she’s being honest at this point. I feel like a terrible mom for even suggesting that, but it wouldn’t be the first time she feigned illness in order to hang out in bed and watch TV. I mean, she’s not stupid! I know the first day and a half of this ordeal her complaints were legitimate. I know the misery is real. Now, however, she seems perfectly fine.

I’m giving her this extra day as a show of faith. I also know that the day after a migraine (if that is indeed what she has) is always precarious. When I have a migraine, if I’m lucky enough to wake up without it the following day (and usually that is my only hope), I will spend that day after feeling fragile. I might feel weak and nauseous and just on the precipice of another migraine. I understand that’s typical.

The Cheeks present a puzzle for everyone who’s ever encountered them. So how am I supposed to know what to do? I guess I’m not. And that, my friends, is the hardest part. What’s worse than having your kid beg you repeatedly to “Help me!” and all you can say is, “I’m sorry”? All you can do is get their favorite takeout and let them sleep in your bed and hope the misery passes.

So today I err on the side of caring. I often second guess myself in these scenarios. Should I take a hard line and go with my gut feeling that Maddie’s working this a little bit? Or should I let it go and let her be? I struggle with this question a lot with both my kids.

I suppose in the long run I might decide I should have taken a sterner approach. I guess when my kids are adults, I can think, “Gee, I really should have done this differently.” Or I might think, “Gosh darn it, I did an awesome job as a mom!”

But for now all I can do is listen to my gut. And my gut says, “Be kind.”

TOES

By late afternoon, Maddie was doing well, which was great because she had an appointment with the podiatrist to get her feet scanned and measured and otherwise inspected for the orthotics. She is handling this whole thing so well.

At the first appointment, the doctor discussed the type of orthotic he would provide. Because her feet slide so far inward when she walks, he planned to make them with a high “flange” – the arch support would have a very high wall, basically, to really keep her feet in place. I’d been thinking about the flange all week. That’s what her first orthotics looked like years ago, and they were really uncomfortable. It was hard to fit them into a shoe.

So when he initiated the discussion again this afternoon, I expressed concern about Maddie’s ability to adjust to that particular orthotic. I want them to work, of course, but they certainly wouldn’t be effective if she couldn’t wear them at all. I explained that her sensory issues presented a special challenge. Fortunately, the doctor immediately understood.

So he watched Maddie walk down the hall while wearing the temporary inserts he had given her last week. His face said everything: he was pleasantly surprised at how much they improved her walk. So, just as I did today, he is erring on the side of caring. (Although I don’t think he’s erring at all.) He will make orthotics that are more comfortable, without that ridiculous flange that I’m sure is amazing but would likely be the demise of this whole endeavor.

In the middle of this appointment, I had a chat with Maddie about her responsibility. “You’re old enough now,” I said, “to commit to making the effort to getting used to these. You understand how important the orthotics are for your well-being. They’ll help you do so many things that are hard now, like taking long walks and running.” She nodded in agreement.

When Maddie was a toddler, toilet training was an enormous challenged. I changed that kid’s diaper for four entire years, much much longer than I ever would have imagined. When she was around three, I gave it a really good try, but we weren’t having any success. And Maddie, in her infinite wisdom, basically told me to forget it.

So a couple of months before her fourth birthday, when I was a year and a half into changing the diapers of kid number two, we had a talk. “You’re almost four,” I said. “When you turn four, you’re going to start using the toilet.” She agreed. Not that her seeming willingness at that time would necessarily lead to her living up to her promise, but I thought it was worth a try.

About a week after her birthday, when the festivities were long behind us, I said, “Do you remember what we talked about now that you’re four?”

“Yes.”

And guess what? She came through.

Perhaps she will come through this time as well. I know it’s possible. I also know she doesn’t want her feet to hurt anymore, although I also know that I’ve been pretty flaky on past attempts at physical therapy myself (like post-ankle surgery), so I’m not exactly a shining example of taking care of myself. Still, I have a good feeling about this.

IN BETWEEN

In the end, it was a good day. We are moving forward. She expects to go to school tomorrow for the full day. This evening she hung out with me in the kitchen while we sang to the radio (actually–product plug!–Amazon Prime Music).

“Do you want to go hang out with Dad before bedtime?” I suggested.

“Nah. I’m enjoying hanging out up with you. I’m happy!”

Music to my ears.

It’s now 8:41 p.m. and Maddie’s suffering has increased. She is trying to relax but instead can only quiver and jerk her legs constantly. She is breathing heavily and making strange sounds as if trying to hold back a scream or a shriek. This is a nightmare.

Last time she was this bad I finally took her to the local emergency room, where the doctor said, simply, “That’s weird.” They had given her something to help her relax, but it didn’t work at all. She still couldn’t sleep even though she was completely drugged up. This type of migraine is, although not painful, apparently even more intolerable than the ones I get. Except that we BOTH get to suffer through these. My heart breaks with every utterance she makes, with every jerk of her leg, with every furrow of her brow.

“What can you do to help me?” she asks desperately.

“I don’t know,” I answer. I just don’t know. I did some research and found out it’s OK to take a sublingual tablet by swallowing it whole. It probably won’t work as well and certainly not as quickly, but it’s worth a try. So she took another Maxalt. Maybe it’ll be better than nothing. I don’t know.

And after such a discouraging trip to the ER last year, I don’t see any point in going there again. We just wasted three late-night hours and thousands of dollars for absolutely nothing.

So here we are. Hopeless. Helpless. Tomorrow I will call the pediatric neurologist. Besides prescribing Maxalt in pill form, I don’t know what else she can do. It’s always awesome to be the patient with the perplexing, “huh-well-that’s-new” problem. Not.

Now’s she in the shower. We just got a bench for the shower and turned up the hot water heater, so hopefully she can relax for a good long time. Still, I know it’s not a solution. She might feel good for the twenty or thirty minutes she’s sitting there, but once she gets out, the torture will resume. And it really is torture.

We are both crumbling under the pressure. She doesn’t think she can tolerate it much longer. And my heart is breaking for her.

Please hold us in your hearts tonight. My sweet, sweet Maddie doesn’t deserve this suffering.

Today is a day of The Cheeks. I’m pretty sure I’ve described this phenomenon before, but here it goes again: Maddie suffers from what we now believe are migraines, but instead of head pain and nausea, it’s all in her face. She describes it as a tingling sensation in her cheeks, but her experience of it is migraine-like in that it’s both intolerable and immobilizing.

After years of puzzled looks and shrugs from both pediatricians and in one case an emergency room doctor, I took her to the neurology center at UCSF where the doctor, a pediatric neurologist, gave a probable diagnosis of migraines. She had never seen migraines manifest in this manner before, but given our family history (I’ve got migraines in spades), and the intensity of the experience, that was the doctor’s best guess. So she prescribed a migraine drug called Maxalt because that’s the one that works best for me. It’s not one hundred percent effective (sometimes it doesn’t work at all), and I also take preventive medication, but it’s the only thing that has EVER worked even a little bit, so it was worth a try.

This morning I managed to get Maddie completely dressed–hat, glove, shoes, the whole business. And I do mean I got her dressed, even applying deodorant to her slightly-hairy (but clean) armpits. But then she just sat there on her bed. I was getting pretty frustrated, but what could I do? So I let her sleep for another ninety minutes (during which I took the dogs for a shortened version of the ride they had expected to go on–yes, I did that!). Then it was time for her to get up so maybe she could make it to second period.

But in the end my efforts were wasted. Her way of managing these situations is especially frustrating because she’ll just be silent. She will keep her eyes closed and say nothing at all. This morning I asked her repeatedly what her plan was without a response. Finally I said, “Are you not going at all?”

“Ding ding ding. You got it.” Finally! Words!

After a few deep breaths, I turned off the light and left her room. No use putting more energy into getting her to school today. I’ve got to be logical in times like this, as much as I can be anyway.

And then a few minutes later there was a knock on my door.

“I have the cheeks,” she lamented. Oh, crap. The Cheeks. She hasn’t had those in months.

I fished out a Maxalt from my own stash and gave it to her. I know she doesn’t like to take it. It’s taken sublingually, which is hard for her because of the chalky texture that just sits in your mouth for a few minutes while the pill dissolves is unpleasant. It’s hard for her to tolerate. And it’s minty, which she hates.

“I know you don’t like it, but just try to suffer through it. It’ll be worth it if the cheeks go away.”

She reluctantly put it in her mouth and for the next couple of minutes cringed and gagged and complained and then finally gave up. Optimistically maybe she ingested half.

And then, “It’s not working!”

“I know, Sweetie. It takes awhile to work. Maybe forty-five minutes.”

“How long has it been?”

“I don’t know. Maybe five minutes.”

“ONLY FIVE MINUTES?”

When you have a migraine, a minute seems like an hour. An hour feels like a day. Usually my goal on a migraine day is just to survive it long enough for bedtime to come.

“Now how long has it been?” she asked again.

“Maybe fifteen minutes.”

Ugh.

Finally an hour had passed. “Do you feel better?” I asked.

“A little.”

I would say very little. She still is nearly paralyzed with discomfort. She turned on a movie to take her mind off things. That’s what I do. I’m not sure how much it’s helping.

If only she had taken the whole pill, maybe she would be OK. But maybe not. When I get a migraine, sometimes one Maxalt works. Sometimes I have to take a second one. Often even the second one doesn’t work, in which case I accept that my day is shot and I just go to bed. That’s just how it is. And it stinks.

So today is one of those Maxalt-isn’t-working-there’s-nothing-else-to-be-done kind of days.

I will take good care of my suffering kid and hope tomorrow she’s better. I had a two-week migraine myself not so long ago, during which I vacillated between acceptance and self-pity and back to acceptance. But I’m not fifteen and I don’t have Asperger’s. My hope is that one day the migraines will cease. If that’s not the case, I hope she can figure out how to better manage the misery.

Thank you to all of you–from my closest friends to people I’ve never even met–who have reached out to me about my blog.

Occasionally I run into an acquaintance who says, “Hey, I heard you’re blogging!” That means somebody’s talking about it! Thank you!

Sometimes I hear from an old friend who praises my writing, and I think, “Wow, SHE likes it! I must be doing alright!” Thanks for the compliment!

Sometimes a good friend will reach out after reading my blog after a particularly difficult episode and ask if I’m doing OK. Maybe even take me to lunch. Thank you for checking on me!

Sometimes I get a comment from a stranger saying they can relate to my struggle. Sometimes a stranger encourages me to hang in there. Sometimes I even get a thank you. For all of those things, I thank you!

My sisters always “like” my blog on WordPress. Becky is usually first. Thank you, ladies!

Some of you have subscribed. Thank you!

Sometimes I get encouragement or empathy: “Don’t beat yourself up!” or “You’re a wonderful mother!” or “I’ve been in your shoes. This is hard stuff.” Thank you so much for sending your love.

Recently I ran into another mom I know. She said, “I always relate in some way to your blogs, even though we’re in very different situations.” And then she told me her own heartbreaking story. Thank you so much for reading my blog, first of all! And thank you for the courage to open up!

Thanks to all of you who read the confessions of my failings and the laments about my regrets, and who open your hearts to me instead of making judgements. Thank you for understanding. Thank you for being open yourselves. Thank you for your compassion.

And thank you from the bottom of my heart for reading my blog.

More entries on the way!

First of all, a brief update for you all. Maddie went to school every single day for two whole weeks! To make a long story short, she was allowed to drop geometry and take computer graphics instead, which is making all the difference in her feelings about school, Tuesdays and Thursdays in particular. She just never felt connected to anybody in her math class, and although she was successfully academically (despite her poor attendance), she had great difficulty facing that the each day. So we finally decided to trade in academic goals for the more immediate goal of–basically–just going. Success!

This week was a little tougher from the start. A three-day weekend is actually a challenge for us because the longer Maddie strays from her routine, the harder it is for her to return to it. Even a single extra day throws her schedule into a tailspin, so sure enough, Tuesday morning she refused to go to school. I tried to motivate her, but we all know how that usually goes.

Wednesday was tough as well, but I finally managed to get her going. We arrived at school about 10 minutes late, which on Wednesdays is not a big deal because her drama teacher doesn’t seem to care too much. Plus late is a whole lot better than never, so we’re all just fine with a certain amount of tardiness.

Part of the problem that morning was her right ankle was hurting. This is not new. For years Maddie has suffered frequent foot and ankle pain. If you took one look at those feet, you would think “Oh, the poor dear! Look at those feet!” And you would be right. They angle outward and severely pronate, giving them a very flattened out appearance. They also make it hard for her to really run, and they most certainly make any lengthy walk both painful and exhausting.

So when we pulled up to the school, she said, “I can’t do it. My ankle hurts too much.” I had wrapped it in an ace bandage in a meager attempt to immobilize the joint, but as a weak-ankled person myself, I knew it probably wasn’t helping too much. Unfortunately, she really couldn’t skip drama that particular day. They are working on a musical and she had forgotten about a weekend rehearsal, so she’s promised her teacher she wouldn’t miss any more.

“I’m so sorry, Maddie. I know it hurts. But you really have to go to drama. If you can’t stand on stage with everybody, just tell your teacher and I’m sure he’ll let you sit down.”

“I don’t think I can do it,” she said again, this time with tears forming in her eyes.

“You can do it. Just call me right after drama and if you’re not doing well, I’ll come back and pick you up.”

That seemed to do the trick, and reluctantly she exited the car and headed off to drama. While she was at school, I did some research and found a podiatrist nearby who specializes in orthotics, which I fully expected to be the first step in correcting her problem. I made an appointment for this morning, thinking that she probably wouldn’t go to school until she saw a doctor, so the sooner she saw one the better. I did tell her, though, that there wasn’t going to be an immediate solution, but we were both eager to get this train going. It’s no fun to have chronic foot and ankle pain.

So this morning I let her sleep in before we headed off to see the doctor. He asked Maddie a bunch of questions, did some strength and reflex testing, and watched her stand and balance and walk down the hall. He then explained to us the mechanics of her walk. Basically the structure of her feet make her walk in such a way that severely impacts her ankle. Each step is a big “thud” causing stress on the bones. And a bunch of other bad stuff I can’t remember.

Because what I do remember clearly is this:

“A conservative approach would be custom orthotics.” He explained how they would support her feet so she could do a proper heal-toe roll when she walks. “Or we could do braces.” (Gulp.) “Or eventually surgery to correct the structure of her feet.” (Punch to the gut.)

I was very calm. I expected orthotics. I hadn’t ever considered a brace. And surgery? Oh, hell no. I had ankle surgery a couple years ago, and although it really was successful in addressing my loose ligament and the severe pain that was making it nearly impossible to walk, I don’t know that I would so readily go that route again. I would try every other avenue out there before I endured the months-long recovery (including an entire month of no driving) ever again.

“Don’t worry, Maddie,” I reassured her. “We’re not doing surgery.” I knew that for sure. Maddie was clearly upset to learn her feet were even more problematic than she had realized. I get it. I was sympathetic, supportive and hopeful, just like a mom should be. I assured her I knew how she felt and that the good news is we have a doctor who can help address the problem. I wasn’t emotional. I was comforting but practical. Well done!

But on the inside I felt something else. I felt a huge ocean of guilt wash over me. This is my fault, I thought. I could have done something about this a long time ago, and maybe early intervention, at a time when she was still growing and developing, would have actually solved this problem for good.

When Maddie was nine we had seen this very same doctor. (In fact, as we drove up to the office this morning, Maddie said, “I swear I’ve been here before.”) He had prescribed orthotics. He had made the orthotics. We had taken them home with us and tried them in a variety of shoes. But they were just huge and unwieldy and Maddie wasn’t tolerating them well. And I, her mother, had given up. She just didn’t seem to be able to cope with those uncomfortable, annoying things in her shoes. And, as I have done so many other times with her, I chose to quit. It just wasn’t working, and at that time it wasn’t going to work.

When you have a kid with so many road blocks, with so many special needs to be addressed, sometimes you have to choose to let some things go. At that time she was going to a psychologist, an occupational therapist, and a social group every week. Wasn’t that enough? Wasn’t just getting through school and all that freaking therapy enough? Did she also have to start messing with her feet? Everything we did was therapy! And that just stinks.

It’s easy to say, now that she’s almost 16 and has pretty severe foot and ankle problems, that perhaps I made the wrong choice. Maybe I should have given up something else. But what? That I can’t see clearly from this position of otherwise 20/20 hindsight. That part still isn’t clear.

So today I try to calm down the waves of guilt I feel. I try to breathe into this feeling of failure. Breathe out guilt. Breathe in hope. Perhaps now really is the right time for this. Maybe the orthotics will do the trick. Maybe she is ready to cope with some initial suffering in the beginning to achieve the intended results, which are to reduce pain and increase stamina.

I don’t know. I can’t know. I will try not to beat myself up. Too much.

And we will go forth, trying to do the best we can now.