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.

Well it seems I’ve officially become a sandwich. I think that’s what we’re called: The Sandwich Generation. We had kids a little later, so while we’re still caring for our children we are beginning to have to care for our parents as well. We are sandwiched in between the young who need us still and the old who are beginning to need us for the first time.

This is not a good sandwich. I am not qualified to be the meat or even a condiment or even shredded iceberg lettuce. Luckily I have two sisters who can join me here in the middle, and maybe together we’ll become something worthwhile. But for now, it just feels scary. I don’t want to be in this sandwich at all. Honestly I don’t like even the open-face variety in this particular scenario, because both taking care of my special needs teen (and eventually special needs adult) and taking care of my parents are overwhelming, confusing jobs. At least I have partners in both.

Last week I made several attempts to write a blog. I still might write about last week, but for now suffice it to say that we entered Golden State Warriors territory with the attendance. Five whole days in a row! I think it’s a record for Maddie, at least for this year. I’ve been basking in the glory of this success while keeping in mind that life with her is always–always–a day-to-day experience. Last week was great! I hope today doesn’t suck!

And then this weekend the shit hit the fan. That’s such an excellent metaphor. It describes both the unpredictability and chaos of the event as well as the difficulty of cleaning up the mess.

And this time the “shit” was my dad.

For the last ten years or so, he has been in questionable mental health. He has suffered debilitating anxiety since becoming so ill he very nearly died. His body recovered, but his mind did not. It has been difficult, painful, confusing and upsetting to watch him suffer. And even more so to see the effect his mental health has on my mom. He rarely goes out, has difficulty completing small tasks, and fixates on every possibility of something going wrong. He is easily frustrated. He has a million ridiculous ideas. Thank goodness for sports, though. He is at least able to spend time focusing on Giants and Warriors games.

My sisters and I try to uncover the truth of exactly what goes on in our parents’ house, but my mom is so private and proud that it’s hard to extract the information we need. “We’re okay,” she’ll say. “We just keep going.” Sometimes she’ll say, “Dad’s having a bad day,” but when I ask her what that means exactly, she isn’t forthcoming. Perhaps it’s just too hard to describe. Perhaps she’s afraid she’s going to make her life sound worse than it is, in which case she’ll be “complaining” or, worse, giving her kids something to worry about. My mom is The Helper. She is The Caretaker. She is the Strong One. She is not the needy or sick or helpless. Those are roles she cannot accept.

After a bit of an outburst on Saturday (I wasn’t there), it became clear that Dad needs more help than one person can provide. He needs professional help. My mom needs him to have professional help. He needs mental health support and my mom needs to extricate herself from the spinning vortex that has swallowed my dad.

So my sisters and I have decided he should move into a Veterans home. We think that’ll be the right setting for him. He served in the Air Force in the 60s, and although he was never dispatched to Vietnam, he is still a veteran during wartime, so he qualifies. In my incredibly uneducated opinion, I suspect he does suffer from PTSD, at the very least from the time he nearly died ten years ago. Not so much from the fear of dying, but from the relief he seemed to have at the prospect. He was almost looking forward to it, and then the doctors realized they had misdiagnosed him and he would eventually be just fine. He went from being miserable to relieved and then what? Kind of disappointed, I hate to say.

So now we’re at a point where something must be done. And once again, as I have with Maddie so many times, I feel utterly rudderless. Whom do we call? What if that doesn’t work out? Can we afford it? What if Mom just can’t do it? What if Dad refuses? What on earth do we do? Where is the fricking manual for this?

It’s just about 8:00 and I’m about to wake Maddie up. A sleepover weekend usually spills over into the week as Maddie needs to recover after even a single night of not enough sleep. So I let her sleep in this morning and miss her first class of the the day. I am having anxiety about it, though. I bet she won’t get up. I just know it.

And here I will be, lost at sea with her again too. Frustrated and anxious about Maddie. Anxious and afraid about my mom and dad.

This is the worst sandwich ever.