The Year of Living Hopefully

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.

Seriously, my hair looks really good today. I spent the requisite seven minutes to blow it dry and style it and darn if it didn’t turn out looking pretty good. So then, I thought, well I might as well put a little extra effort into my face. I rarely spend much time on my makeup (although I do wear some every day), but this time I was really paying attention. Nice job! I looked in the mirror and, thanks to the poor lighting in my bathroom, I thought, I don’t look half bad! I somewhat successfully diminished the depth of the purple under my eyes and I did a fair job covering up what we now more gently refer to as sun spots (that sounds so much better than age spots) and even the tiny pimple starting to appear on my chin. Why, I’m practically glowing!

Now I get dressed in my usual uniform, which almost always, unless it’s very hot, begins with a pair of jeans. Ripped, especially. I don’t know why I prefer a pair of distressed jeans over a nice new-looking pair, but I do. I’m forty-eight years old and I love my ripped jeans. Maybe it’s a not-trying-too hard look I’m going for because who wants to look like they thought for three hours about their outfit? Oh, haha! This old thing? I just threw it on. My knee is sticking out of this pair, but there’s no fabric flopping around, so it’s all good. I put on my new tee-shirt featuring a graphic of Marilyn Monroe’s face. I think it’s from an Andy Warhol painting. It’s pretty cool. Then a cardigan. I have a bunch of those because where I live pretty much every day is a sweater day. Wait, nope. That’s going to be too hot, so I trade it for my black fringed poncho. I feel cool in that. And then finally, the one deviation from my uniform: heels. I grab a pair of high-heeled, slingback studded clogs that I love but never wear for fear of a broken ankle. It’s almost always flat shoes for me, but clumsiness be damned today! I’m wearing high heels! I notice what I get out of wearing heels: being taller makes you feel skinnier, which feels good right now since there are at least 20 pounds I could lose and still not be especially thin. Plus you get a different view from four inches up. If you’ve never tried it, you’d be surprised at the difference!

I grab the dogs and head out the door. My first stop this morning is the groomer. I manage to walk the 20 steps to the door and deposit them without incident. It’s a good start to a day in heels (which, by the way, will spend every minute at home OFF my feet). Then I get back in the car and look in the mirror. My skin looks kind of luminous today and my hair still looks good. Damn, girl!

But those vertical lines between my eyebrows are working. They are working HARD. I try to relax my face, but it’s really difficult. I feel a headache brewing behind those lines. Confession: Once I even tried botox on those but found out my muscles up there are “too strong.” Yay, strong frown muscles! I don’t care about wrinkles, but I don’t want to look like I’m frowning all the time. Oh, well.

And there it is, a small but powerful sign of how I actually feel inside. I am overwhelmed with sadness at the duality. I imagine somebody looking at me from the outside. My five-year old luxury SUV has finally gotten properly cleaned inside and out and now looks like a shiny new car instead of the filthy family- and dog-mobile that it actually is most of the time.  It’s a nice car, but it really just gets us and our stuff around. It really is a UTILITY vehicle.

I think I look pretty put-together, maybe like my newly-detailed car. But I don’t feel remotely put-together on the inside. I feel like I’m about to crack. Those frown lines on my face are like a gate holding back a massive breakdown. I feel the pressure. It doesn’t feel good.

This morning was rough. There was anxiety and frustration and anger and sadness and miscommunication and even kind of a fight. A typical morning with Maddie (no, she didn’t go to school) ended with some tension between me and my husband (not surprisingly, parents with special needs kids are more likely to get divorced, so we’re beating the odds). And now I’m feeling low. My life feels unmanageable. There is a lot of futility in what I do every day. But I do it. I try to maintain a calm inner self, and I do that pretty well, although I maintain my calm outer self much better. Today is like that. Good on the outside! Pretty shitty on the inside!

I’m trying to breathe. You know how in yoga you are supposed to breathe into parts of your body to help those parts relax? How do you breathe into your forehead? I’m not sure. I’m going to think about it, though. Not so much for how I look, but for I feel. There is so much tension up there. No wonder I get migraines.

I’m thinking about this now: how the inner life of a person is truly their inner life. Unless they say it out loud. Who knows what lurks below the shiny surface?

Yesterday I was in line at Whole Foods and the woman in front of me kept looking the groceries I had put on the conveyer belt and then back up at me. It was very noticeable. I thought maybe she didn’t approve of my purchases. Not one head of kale in the cart! No almond milk or herbs for aiding digestion! Bagels and cheese, though!

As I was trying to figure out where to look to cope with this uncomfortable moment, my eyes settled on something in her section of the conveyer belt. Lobster juice. I could barely complete the thought “Huh, lobster juice” before she spoke up. She was buying it for her cat, who has been unable to eat and has been losing weight. She hoped putting lobster juice on the kibble would encourage eating. She and her husband had taken the cat to a nearby vet school for care and after spending thousands of dollars already, they were faced with choosing whether or not to proceed with exploratory surgery, after which the two possible diagnoses required extensive and expensive treatments. She is torn.

I wasn’t sure what to say. Fifteen years ago the best cat in the whole world became very suddenly very ill, and not expecting anything but a solution, we spent $3000 on overnight care at the local emergency pet clinic, taking him back and forth for the night, and eventually allowed the vets to perform exploratory surgery to figure out the best solution. In our case, there was no solution. His intestines were disintegrating and there was nothing to be done. So we had put our poor dying cat through all that misery, spent all that money, and had only a dead cat three weeks later. It was terrible. We were heartbroken that he died, and I was even more heartbroken that his last few weeks were so miserable.

So, I wondered, do I say that out loud? I remembered when my aunt was diagnosed with cancer, and everybody told my mom (her sister) about how someone they know had cancer and then DIED. Good intentions gone awry! How about you know somebody who beat cancer? Or how about, “I’m so sorry.” Or how about shut up?

I felt like she was telling me all this for a reason, though.

“Been there, done that,” I said. “Our cat had exploratory surgery and then it turned out they couldn’t do anything. We spent $3000 and ended up with a dead cat.” I was kind and sympathetic in tone, not angry, just relaying the facts.

She looked strangely relieved, as if I had give her permission to make the hard choice. Her cat is ten years old and she’s not sure she wants to give it chemo. I nodded. We understood each other.

For two minutes, she had a new friend, a sympathetic ear, a person who knew her most painful dilemma. I wouldn’t have given her a second look if she hadn’t been strangely eyeing my groceries and then finally spoken up about the lobster juice.

She paid for her groceries and said to me, “I’m sorry about your cat.”

“Good luck with your cat.”

We nodded at each other. And then she was gone.

And there you have it. We all have our stories. Some of our stories are camouflaged by fancy cars and good hair. Some of them hide in the plain view of the grocery store, if only we can see them. Or hear them. Or feel them. Or imagine them.

What is your story?

Today is Monday, the first day of school after nine days off for “Ski Week.” Nine days off for all of us. Instead of waking up to that brain-stabbing sound of my alarm at 6:30, I got to sleep until 8:00, when I was woken up by the equally jarring sound of my dog barking at the construction guys who show up promptly every day to work on our backyard project (which, by the way, is almost 16 years in the making). At least I can turn off the alarm with the swift swing of an arm. The dog requires yelling or maybe an accurate pillow throw or perhaps an escort out of the room. Today I finally put up a sheet to shield Ginger’s view of the guys who appear on the other side of those French doors, begging to be reprimanded by our protective pet. We shall see if it works. I certainly hope so as I’d prefer not to carry out my threats of killing her in her sleep.

It sure was nice to sleep in. Some days Maddie slept until 8:00, sometimes until 10. What’s the phrase? “Never waking a sleeping teenager”? Maybe that’s not it, but if you add “on the weekend and during vacation,” perhaps it should be a thing.

So Maddie slept (and played Minecraft, but I think at this point that’s implied). She wore a polka-dotted dress for three days after my niece Rachel finally got her to change her clothes and join the ladies (including my mom) for breakfast at a local coffee shop. Once the dress got stinky, I settled for the minimum and had her clean up her armpits, put on fresh deodorant, and change her clothes, and this time she chose her cat onesie pajamas, which she wore for another three days, at which point I made her take a shower. That was yesterday.

We all get the Sunday blues, but for Maddie even one extra day at home throws her off. Plus she had developed an ear infection over the last week. Fortunately we got the diagnosis on Thursday and were able to start treatment well before Monday, but I could still see what was coming. She wasn’t in pain, but she still can’t hear much out of her left ear, which she pointed out last night.

“You just had NINE days off, Maddie,” I told her before she could say what I knew she would, “so you can’t have ‘a day.'” That’s what she asks for when she just wants to stay home for no particular reason: “Can’t I just have a day?”

We all hate it when our request is denied before we can even make it, don’t we? And can’t every mom, to some degree, see this stuff coming? Poor kids! Also, haha!

So last night, my mission was to stay in the raft, going with the flow of the river, not trying to fight against the current. I want to USE the river to propel me forward. It’s so logical!

And yet, this morning, once again, I could feel the raft heading toward a sharp rock in the river. I could imagine getting stuck, not able to move forward or back, unable to maneuver in any meaningful way.

“I’m not saying I don’t want to go to school. At all. I do. It’s just that I won’t be able to hear very well, soooo….”

“It’s better to go and hear half than to stay home.”

“It hurts a little.”

“You can take an ibuprofen.”

She made a move toward the bottle and said, “Oh shoot. I can’t because I took one last night.”

“Oh, that’s OK! You can take one every four to six hours! So you can take one right now!”

Dang it again!

I kept cheerfully thwarting her arguments, which she so gently put into play. I suspect she hoped I would simply conclude myself that staying home would be the best option for her.

Unaffected by Maddie’s ploys, I continued my quest to get her dressed. It takes me a full 45 minutes of focused attention from the time I wake her up until I get her out the door, with only a moment or two to throw some pants and a sweater on (often over whatever I slept in) and brush my teeth before we get out the door. It’s an intense morning every single day.

But I try everything I can to be not only calm but cheerful, even though I know every single morning it’s going to be a trial. So after our back-and-forths about her ear, I could see Maddie fading away from the whole school idea. I sat next to her on her bed, and she started to tip over quite purposefully, but I put my body between her and the bed to hold her up. Once she’s horizontal again, you can pretty much forget it. I tried to lift her shirt up to get things going, but she clamped down her arms.

And then, I jumped off the raft. “I will cut this shirt off you if I have to.”

“You will? Why?”

“Because you need to get dressed, that’s why. And yes, I will.” I don’t think I actually would have because visions of a wrestling match with scissors involved suddenly seemed like a terrible idea.

She resigned herself to the shirt exchange. And then she sat there. You really can’t put pants on when you’re in a sitting down position. I held her jeans down by her feet. She didn’t move. And I could feel the heat starting to build. I remained calm, but I also could see that my fun approach was failing. I always give the light and cheerful approach a fair shake in the mornings, but at some point I have to accept it’s not working. So I picked up her water bottle.

“There’s a pretty good amount of water in here that would be pretty unpleasant if you were wearing it,” I said.

That always gets a jump up. Oh, how I absolutely hate to use threats. It’s not at all how I was built. I am the fun mom, the positive mom, the hugging mom. I’m not the mean mom. I’m not the angry mom. I’m not the punishing mom. I can’t even train our dogs. I’m just not alpha enough. But sometimes I have to muster it up. And today I did. I held the bottle in my hands. I was quiet and calm but resolved.

“OKAY!” Maddie was clearly exasperated, but she gave in.

I hate that compliance is what I’m aiming for. I’d much prefer self-motivation and acceptance on her part, rather than fear to be the motivating factor. But I guess, in a way, it is acceptance. “If I don’t do this, then this other thing will happen. And I don’t want that.” That’s certainly a life lesson, but I’m not sure how well it carries over into more complex thinking.

Still, I just wanted her to get up and go to school. Today. I can’t even think about tomorrow. After all that, we arrived at school early, no less. Five whole minutes. Her peers were gathered at the drop off spot, and I heard one of the educators yell her name in delight. It was the fastest car disembarking she has ever done, at school anyway. And so I drove off. Mission accomplished.

I’m hoping tomorrow’s mission has a similar result without the threats. That would be so nice!

At least we are both able to move on and enjoy ourselves. We listened to the B-52s all the way to school and sang and danced. I was kind of done after the second song, but I realized the music was energizing for both of us, so I decided every day on the way to school she can choose whatever music she likes, even if it’s the same B-52s songs every single morning. Who cares?

And off we go. We have about six weeks until spring break. I think I’ll work on my rafting techniques.

When I was a teenager in the 1980s, I loved my high school dances. I’m not sure why, but the kids at my school knew how to throw a good dance. Kids actually danced. One of my friends would sweat to much that her bangs would get wet, bringing out the cowlick she worked so hard to camouflage. We just danced with abandon.

I still love to dance although I don’t do it very much. Most of my dancing is relegated to the kitchen while I’m doing the dishes. Or maybe a silly move to entertain my kids (although I’m probably only entertaining myself). A couple weeks ago my husband and I caught a local 80s cover band at a local music venue, and I danced nonstop for two hours. That’s particularly remarkable because my back hurts if I walk around the block; somehow dancing must block the pain receptors in my brain, as evidenced by the fact that my neck only hurt the day after the head-banging that always goes along with an AC/DC song.

Maddie was born with my love of dancing. When the kids were little, we often spread couch cushions around the TV room for a family dance session. We’d crank up some B-52s and jump and dance on the couch and onto the cushion-covered floor. It was such a satisfying way to spend time together and wear out the kids at the same time. Genius!

You may also recall the talent show during her fifth grade year, when she delighted the crowd with her stage-side grooving. Clearly this kid loves to move her body.

So when I heard about the Winter Formal at her high school tonight, I really hoped she’d want to go. Her answer: a very quick and certain “No.”

I wasn’t really surprised. She loves to dance. But she tends to retreat to her room on the weekends. Also, an eight o-clock Friday start is rough. I’m kind of the same way. Once I settle in for the evening, I’m hard pressed to change gears. I can hardly imagine leaving my house after 7 p.m. to go somewhere. Once my pajama pants are on, forget it! I’m done. Thursday was Open House at school. She said she had something she wanted to show me, but I was absolutely certain that when the time came, she wouldn’t be able to motivate herself to leave the house again. I was right (and kind of happy after having made two round trip to her school already that day).

Yesterday a classmate’s mom sent out an email trying to round up a group of girls to go. I had been so short on sleep all week, my plan was to go to back to bed after I took Maddie to school. But of course I checked my email first, and that’s when I discovered this new plan. Maybe Maddie would want to go! But I had three problems. It was 9:30 and ticket sales would close at noon that same day. Also, Maddie needed to sign a dance contract, agreeing to certain standards of behavior. All kids are required to do that in order to attend a dance, and we hadn’t completed it yet. Finally, I didn’t even know if she wanted to go, so I had to somehow communicate with her.

Fortunately her special ed teacher is a huge help, so I was able to talk to Maddie around 10 a.m. I shared the new information and asked if she thought she might want to go. “Yeah!” she answered decisively. So my task was to make the 30-minute drive (one way) to her school for the second time that day, have her sign the contract, turn it in at the office, and then purchase the ticket. It was a little more complicated than that in the end, but by 11:00 I had done it all.

But there was still one more problem to address: what would she wear? Every single day of her life she wears jeggings, a tee shirt, a snap-back hat or a beanie, and either Uggs or sneakers. That is all. It’s a struggle to get her to dress up even a little bit, so I knew had another battle ahead. I remembered she had a black dress from last year’s prom, but I had to make sure it still fit. If it didn’t, I only had that evening to find something else, an especially difficult proposition when your kid won’t go shopping. I always have to buy several items and bring them home and hope they fit. I also had to get her to take a shower.

She got home from school around 4:00 p.m. and I managed to get her to shower right away. Then I asked her to try on her dress so I would have time to shop if it didn’t fit. And that’s when it happened.

“Yeah, I’m not going.”

I was upset. I shouldn’t have been, but I was. I knew from the beginning of this whole process that she might bail out. I really did. But I thought I’d rather give her the opportunity to go if she wanted, so I had spent the $50 on a ticket just to give her the choice. Apparently, though, deep down I was emotionally invested in her going.

“I really want you to go, Maddie.”

“But I’m worried I won’t have any energy for Saturday.” Tomorrow I’m taking her to my parents’ house for a get-together with my sisters and two of her cousins, including her best friend/cousin Maggie, whose company she pines for more than anything.

“You won’t have to DO anything. We’ll just be hanging out. I think you can do it.”

“I’d rather hang out with Mags,” she said. And she means it. She would rather play with her cousin than anything else. If they went to Disneyland together, she might die from happiness.

“Why don’t I pick you up early from the dance? Then you’ll be OK.”

After a few more back-and-forths, she finally asked, “Why do you care so much?”

Hmmmm…she had a point. I had to take a breath and dig deep into my psyche to remember something I’d learned in therapy, and that is that Maddie doesn’t have the same needs that I do or even that I think she ought to.

When the sixth grade dance was approaching last year, my son initially didn’t want to go. It was his first dance ever, and I’m sure the unknowns were intimidating. But he also recognized that if he didn’t, he would be on the outside when all the other kids talked about it afterwards. He could imagine a fun evening, too, and the possibility of regret. He ended up going and having a great time.

But I remembered that things are different for Maddie. First of all, her classmates don’t seem to rehash recent events. The day after the basketball game, for example, nobody even mentioned it. She never knows who’s going where during vacation or on the weekend, or what anybody did last night. They just don’t talk about that stuff.

And even if they did, she doesn’t have the same sensitivity to social situations, for better or worse. I can’t ever remember a time when she regretted not doing something because all the other kids apparently had a good time.

So I had to take a few more breaths and try to let it go. She truly doesn’t care about the dance. I needed to stop caring myself. She is not me. She’s not even her brother. Even though I’m confident she would have enjoyed dance, I can also see that she’s perfectly happy doing what’s she’s doing. She spent some time playing Minecraft, and now she’s having some quality time with her dad. And then tomorrow she’ll be up for a good time with her favorite person in the whole world. How can I argue with that?

We have a sweet, dark gray tabby named Daisy who lives almost exclusively in Maddie’s bedroom. She used to roam the house more, but then we got Ginger, a cat-obsessed Labradoodle, and Daisy decided Maddie’s room, with the door closed, would be her safe room. She does go outside for brief periods, but does so almost always via a window in Maddie’s room.

Daisy has also come up with a couple different ways to make known her desire to come inside. Sometimes she stands on the back of the outdoor couch that sits outside the kids’ rooms and claws a screen. If that doesn’t work, she’ll peer into the tiny square pane in the bottom of the French doors leading into the master bedroom. I see her tiny face silently staring inside, or I might see one of the dogs sitting motionless inside, staring at something so enthralling outside that it could only be a cat.

Tonight I was about to let our dog Ginger out those French doors until I realized what the draw was. There was little Daisy and her sweet face peering in. I thought it was only fair to let Daisy in, rather then setting the dogs on her. So I knocked on Maddie’s door.

“Maddie,” I said. To my surprise, she answered right away.

“Please let Daisy in,” I said.

“Okay, give me a second,” she answered.

I could not believe my ears. Not only did I not have to say her name five times before she responded, but then she acknowledged my request AND let me know she needed a minute. What? Such a mundane exchange. Really. Who would think anything of that? Well, if you were Maddie’s mom, you would have been blown away too.

I returned to my room and waited. Not surprisingly, several minutes went by and Daisy was still looking longingly into the window. I fully expected that brief conversation to be the end of it. I was right. I had to remind her twice before she let the cat in. Eventually she did, of course, and I’m sure, as she does every night, Daisy settled down on the pillow right next to Maddie’s head.

These are the moments I hold onto. Tiny moments like this. Tiny but meaningful. Maybe only meaningful for that single moment, but that has to be enough for now. Inhale the joy, exhale the stress. Breathe in the good, exhale the difficult. Embrace the positive, and well, embrace the negative too, I guess.