One night and a hike in Sedona

We spent just enough time in the charming Sedona last week to make me wish we lived there.  We started the morning in Phoenix and drove north to visit Montezuma Castle National Monument, or rather two of us did and the one with pneumonia and I drooped our way back to the car and drank juice and coughed until it was time to go.  I got just enough of a look to be amazed, and realize any pictures I took made it look like a doll house in the rocks. Guy overheard a teenager lie to his sister that this was Montezuma’s summer home.  *snort*  

We drove on through Jerome (more on that coming soon) and finally made it to Sedona just in time to be crushed to realize The Red Planet Diner is no longer.  We mourned the loss of Space Junk, the entree, then found a worthy replacement at MoonDog’s Pizza.  Granted, we were starving, but I’m still pretty sure the pizza and ancho chicken sandwich and spaghetti were great.  I wanted to ask the owner if he was Moondog, expecting some old hippie, and was grateful I didn’t….because we heard a pack of coyotes singing and chattering three times that night and I put it together.  Aha.  Moondogs are coyotes.  See, here, we hear a couple coyotes do a low howl now and then, but the moondogs in Sedona have a LOT to say.  Especially at the full moon.

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Moonrise over Sedona

Even after a night filled with coyotes, snoring, and two coughing kids, we were sufficiently reenergized by breakfast at Nick’s to go on a short hike before the day heated up.  We headed to Boynton Canyon in a designated Red Rock Secret Wilderness of the Coconino National Forest to hike the Vista trail for the supposed vortex at the end.  We’ll take all the good mojo we can get for the Peanut. Perfect for us.  Gorgeous and restorative, and only one of us needed a piggy-back ride back to the trail head. We’ll go back again and hike some more of those beautiful red rocks for sure.

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After a roadside picnic, we piled back in the car for a drive along Oak Creek Canyon, a thirteen-mile stretch I remember well from the first time my husband and I drove it; I was pregnant and the curves and the dizzyingly close canyon walls were intense and nauseating.  This was a much easier drive.  We stopped at the canyon rim and got a chance to get out and look back….and promise to come back again soon.  Thanks, Sedona!

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Dinosaurs of Arizona

The other main reason we went to Arizona last week was to see dinosaurs.  The dino-philes amongst us had heard there were some fine Triassic fossils, models and murals spread throughout Arizona.  Some of us researched how and where to see every last dinosaur and dinosaur-like creature in the state.  We also brought some of our own and showed them around.

Now, my kids were beyond bored with the amazing facts about the Grand Canyon, including the that the top layer of earth there is Kaibab limestone, rock older than the dinosaurs.  As you proceed down the canyon, the rock gets even older, with the deepest part of the canyon being 1.5 Billion, with a “B” years old!! (Vishnu and Zoroaster formations. Geonerds, check out this awesome geologic map of Arizona. )

Of more interest was the rock formations left from the early and late Triassic periods (Moenkopi and Chinle) for the Postosuchus and the Coelophysis fossils they contain.  (That’s “crocodile from past” and a 10-foot-long bipedal, carnivorous early dinosaur.)

We looked high and low and this is what we found…

In Flagstaff’s Museum of Northern Arizona

In Petrified Forest National Park and the park’s Rainbow Forest Museum, Arizona

 

At the Museum of Natural History of Mesa

*What a gem of a museum.  The Dinosaur Mountain exhibit is several stories high and combines geologic layers of rock with animatronic dinosaurs, animal, and plant life from the corresponding age.  The flight exhibit was also a bit jumbled, but worth visiting.  Not pictured is the Dino Zone, a room for kids to touch, climb and explore around life-size models of  a stegosaurus, Tyrannosaurus, and triceratops set in front of realistic background murals where my children spent more time than the rest of the museum combined, crawling in and out of a tube.  Because they were raised by animals.*

And then there was The Good, The Bad and The Ugly:

 

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Some of us see dinosaurs everywhere 

May you too find dinosaurs wherever you look.

We’re Not in Arizona Anymore

Later, I’ll post a fraction of the dinosaurs and dinosaur-like things we saw on vacation, but right now, I’m going to bitch and moan for a few minutes.  Feel free to skip if you’ve had enough already, but I’m going to sit here with my greasy fingers, eating my cold latkes and list off my most pressing worries:

  1. She’s sick. Of course. She was better, almost, and then she finished her antibiotics, came home and she coughed her disgusting, croupy, pneumonia cough all night long.  Again.  Don’t worry, though—her tummy and head still hurt too.
  2. She’s stressed and went to school in tears. (Although, her brother got up early, got ready early and walked himself to the bus stop with absolutely no cattle-driving done by me.  Miráculo!)
  3. Her new doctor says “let’s give a few more days.”  Sure.  What’s a few more days of misery when it has been years.  Sure.

She started coughing last night and I went out to find something, anything, for her, and instead ate two brioche buns with “butter” and raspberry jam in about a minute as buffer against another sleepless night.

And now we wait.  We wait for school to call to say she’s miserable, her tummy hurts, her head hurts, she coughed up something.  We wait for another couple days to call her doctor back and say “Nope, she’s not better.”  And we wait for summer and better times.

Let’s think about vacation and how easy everything was, even if she was miserable, and then replace all water intake with coffee and/or cheese.  Say “We’re just fine” to people who ask, go for the shortest of runs, cancel acupuncture appointments because we’re too stressed to be still with our thoughts, inspect the blinds and find mold all up the back of them and contemplate burning it all down.

*deep breath*

That’s all for today, folks.  Another edition of “Mom’s Thoughts” at another panicked moment in the future.

 

 

It Doesn’t Get Any Better

I have what could only be described as a fantasy of going out somewhere to, say, Walgreens, or Target, and running into a friend.  Someone I know and trust but haven’t seen in a while and they ask me how it’s going and I tell them.  I tell the truth.  I say I’m unraveling.  I say I go to bed each night thinking about how lucky we are, this posh existence of clean, quiet air, of safe places to sleep, of money to spend on frivolous things and cats to keep us company, the luxury of having two or more of everything.  And I am grateful for those things.  I am grateful for how healthy we are.  And yet I am never free from worry.  She’s sick.  She’s fine, but she’s miserable. She’s blooming, but she’s stressed.  Her tummy always hurts.  Her head almost always hurts.  She never sleeps.  I never sleep and my thoughts aren’t linear or even coherent and that I get lost and dazed in stores and any time I need to speak, but in the hours I am clear-headed and school hasn’t called and I’m not getting something for her, I don’t know who I am.  I’m pretend to be an athlete and go to physical therapy so I can return to running, but I’m already wound tight and getting manhandled and then watched while I exercise is too invasive but I can’t turn my back on my mobility.  I want to run or lift, but she’s home sick and I could only have made it to a class with a new instructor and frankly, I’ve cried and panicked in front of enough strangers already this month.  I’ve out-done myself.  I tell this person that I’m so, so tired.

Today is one of those days when I don’t get to escape into a few hours of oblivion while she’s at school, pretending that she’s doing just fine and won’t come home miserable and complaining of nausea, tummy pain and headaches.  Today she was home sick with the flu.  And while I’m grateful that she doesn’t have pneumonia, I have added another piece of kindling to the fire of worry—how much radiation has she already been exposed to?  A CT scan and three X-rays.  If each picture is about the equivalent of a years worth of sun exposure, and each appointment has two pictures….and a CT scan is supposedly about seven years of exposure….She’s got thirteen years on her tab already.

She’s asleep on the sofa now.  She told me every twenty minutes, on average, how miserable she was today.  In case I’d forgotten.  Each time is like a dull stab in the gut.  We finally have an appointment to see a GI specialist in six weeks.  SIX WEEKS.  A complaint every twenty minutes for six weeks is manageable, right?

I checked the weather just now and apparently we’re not due for more sunshine after yesterday afternoon’s little showing for ten days.  That’s just before we leave to see the Grand Canyon, a trip, which I have been looking forward to for years.  The thing is, I’ve only planned the beginning.  I can’t bring myself to plan anything once we’ve passed the half-way point.  I can’t plan the return home just yet.  Dammitall that I’ve been in this very spot before.

I just spent a while checking out the UV index in New Zealand.  It’s been a growing idea for more than a year now.  A sabbatical or heck, just a life plan of picking up and moving there.  Every time I think of it, which is often these days, but before I even think of the very real road blocks to such a plan (jobs and money, for example), I am reminded of that stupid saying about ‘wherever you go, there you are.’  Well, screw you,  Clint Black and meditation guides and Confucius just to be safe.  I am sure that if we cleared out and moved across the world our lives would change enough so that whatever we are doing wrong, whatever cause behind her stress and pain, would have to disappear.  Is it school?  Is it allergens? Is it all stress?  Is it an ulcer or abdominal migraines or reflux or just a highly acidic system?  It’s not Celiac or IBD, which we knew.  We can’t call is stress until everything else has been eliminated.  I see scopes down her throat and very specific diets in our future.  Maybe one of those things will help.  Or maybe…we should just throw up our hands and leave the country.  UV index aside, it can’t hurt, right?

We could live in a town called Dunedin for crying out loud.  A namesake of the capital of Scotland and just a matter of pronunciation away from the race of men from the west and King Aragorn himself.  How happy we would be to live in a place that makes me think of Edinburgh AND the Lord of the Rings.

I digress.  I do it a lot.  It’s how I stay afloat.  Because despite all the richness in our lives, including the very truth that we could in fact, uproot and drift or move to another country if we were brave/reckless enough, I can’t escape the basic truth that my identity is entwined with taking care of this little girl…and that I’m failing.

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Did you hear a high-pitched, hysterical laughter in Target the other day? Me too! So weird.

I ran in to a friend at Science Night.  A fellow mom.  A woman who looked me in the eye and reminded me that a whole tribe of moms have adopted me and us.    And I felt it last night.  Rather than stick close to the kids’ posters for long, or making small talk with my in-laws, I wandered about and took pictures of kids and their projects.  I saw a lot of my tribe last night.  Making volcanoes with the first graders, clapping for their third-grader’s cloud demonstration with sincere joy, asking my daughter just how should we take care of our teeth, pacing the overcrowded, over-loud gym and making time until we could go home.  Those are my people.  Near and far. Those are the ones I send distress texts and extensive missives to, the ones who watch my kids and feed them vegetables and make them play outside, the ones with a “chocolate here” label on a cupboard and an unlocked door, the ones who meet me for a swim or run or movie or nachos.

I keep telling her that she’s going to get better, that we’ll figure it out.  It’s time I started believing that again, too.

 

The Cost of Blooming

It sounds like an exaggeration when I say I haven’t slept well in almost nine years, but it’s not.  My son is almost nine.  He didn’t sleep well until he was 4 1/2.  My daughter is 6 and has never slept well.  There were some overlapping years when neither of them slept and I was a zombie;  I would pray every time before I drove my car.  And then he started sleeping like a log and one kid’s needs in the night didn’t seem so hard.

A month ago, she started sleeping bedtime til morning, uninterrupted, a whole 11 hours and it was the strangest thing.  (She’d only slept more than six hours in a row less than ten times in her life before that.Really.)  This happened about ten times in two weeks and then we were back to getting up once or twice every night, like always. And my well of adrenaline or whatever I use to function is dry.  I don’t have anything left.

We haven’t done a sleep study on her despite the need.  I’ve always been put off by her doctors, who say she’s too young or we need to get X under control before we do a sleep study.  X being her headaches, her tummy aches, her sinus congestion or croupy chest cold.  Or we need to wait on what the neurologist says or give her a couple more weeks of school to settle in.  And I’m too tired to argue.

It’s true that I’ve hit bottom before.  With a broken heart and bruised spirit over her, even.  I’ve sent out distress beacons before or sat down on the floor of the grocery store or quit workouts after the warm-up out of fatigue.  I’ve lost hope and been so grateful that this is my work, this raising her is my job, and been all over the map with worry and “solutions”.  None of it matters.  What matters is what happens tonight and how she feels tomorrow and the day after.

“I’m just here to help her bloom.”  I heard myself saying that to a nurse just now over the phone.

I stood up too fast after getting stretched out at PT this morning and had to bend double for a good, long minute to un-fog my head.  Of course he asked if I was okay and what was going on and I, of course, said I’m fine, it’s just a head-rush.  So when he went to type up my new exercises I slipped on my boots and emergency-texted my husband and got a friend to come pick me up because the internal shakes weren’t going away.

I don’t know what your greatest fears are.  I pretend not to know what mine are most of the time, but one of them is being trapped somewhere and another is being incapable of getting my body to do what I need it to.  So when the PT came back and read off the new instructions, those two fears asked just how I planned to walk out of there, and I suddenly couldn’t understand what he was saying or what the letters on the page meant and started to visibly shake and cry and feel deeply embarrassed.  He got me some ice water and talked me down and when I stood up to leave it happened all over again with me leaning against a table.  Turns out he knows panic from the inside and his next patient cancelled, and he’s calm and concerned and can he call my doctor for me. He walked me out to the front doors and I told him that I was one hundred percent, but we both know I’m a liar.

Stef picked me a minute later and I cried and told her I was an idiot.  And she laughed and said I could pin this on anything and bought me a coffee and drove me home.

The nurse from my general physician’s office called while I was napping with the kittens.  My PT was worried.  And so is my GP.  Do I want to come in and talk?  And I broke down on the phone.  “I’m fine,” I repeat.

We talk through what happened this morning and I mention my daughter and sleeplessness and make an appointment for next week for lack of anything else to do, and then in parting, the nurse asks, “How old is your daughter?”

She’s six. No, I don’t have insomnia—She doesn’t sleep and therefore I don’t sleep.  No, home isn’t stressful.  Being away from home is stressful.  She doesn’t speak easily to people she doesn’t know very well and it’s so hard to be in school when you want so badly to be there and to be in front of the class and to show off what you know but you don’t speak, you can’t speak, the words get stuck in your chest and make your tummy hurt and your head ache.  She still wakes in the night and needs reassurance.  Or medicine because her head feels so terrible. And I’m just here to do that, to help her feel better, to let her find her self and her voice, and to make sure she blooms.  Because I’m her mom.

The nurse is one of my tribe, because she pauses and says she feels for my daughter, and for me.  Because that’s what my daughter needs, and me too, I suppose.  We don’t need tough love, or to be left alone in the dark night with our own fears.  We need someone to place a hand on our back and remind us to breathe sometimes.  Or lots of the time, I guess.

I still believe that this is the right path.  That the vitality and sanity and normal interactions with near strangers that have been lost are a small price to pay for her to grow up knowing that she’s safe and loved and most certainly not alone.

She’s my daughter.

The New Learning Curve

The learning curve when you have a baby is so steep.  All this waiting and puking and months-long migraines and watching That 70s Show.  And then suddenly you’re never alone.  Never.  The missing puzzle piece is here. You hold a baby, wear a baby, eat with the baby on your lap, sleep with the baby on your chest, nurse the baby while buying groceries.  And then, somehow, there’s another baby and you learn to do all the above with the new, tiny one, while holding the hand or the truck or the monkey of the first child’s at the same time.  And now you are certainly, aggressively, never alone.  You go to the bathroom holding the littlest, while the toddler and the cats watch and take turns dropping things in the tub or sink or garbage.

And after a bit of this, it becomes normal.  Neither of them take a bottle.  Absolutely will not.  And you know what, who cares?   You don’t need to go anywhere, be anywhere but here. You are all they need. Neither of them sleep, not alone anyway.  And who can blame them.  Would you want to sleep in a little cage in a big, quiet room, who knows how far away from anyone? I wouldn’t.

When the eldest went to half-day kindergarten, he was ready, and I was not.  My heart and my skin had never felt quite so lonely.  And so the littler one and I filled our time with nonsense until he came home.  I don’t remember how I managed it, but I once went on a field trip with the four-year-old, leaving the two-year-old in someone else’s care, and we both were heart-sick by the time it was over, him asking “When can we go home, mommy?  I miss my Bon-Bon.”  But his missing us diminished as he grew, and mine didn’t. Mine grew each day, each year.  Last year, we made the leap to him in school all day PLUS her in school four half-days.  And this year, they’re both in school full days.  Thirty-six long hours.

And I hate it.  The saving grace is that my son is finally happy at school.  Being a third-grader gives them some choice about who they eat lunch with, where they sit on the bus, what they can check out of the library.  He has a classroom of kids he’s used to, with fewer distractions and noise than previous years.  My daughter loves her teacher, but doesn’t understand why people continue to talk to her or don’t follow the rules all the time.  If they were miserable as they have been in the past, I don’t know what I’d do.

Now, all I have to do is figure out my own plan.

I had a plan.  I was going to tear through the house when they went to school and get rid of all the stuff we don’t use and the too-small clothes, clean all the things I haven’t since I was nesting, in labor with my son eight years ago, fix all the little broken handles and dents and edges.  Empty out the garage.  Take care of the yard and gardens.  Get oil changes and haircuts and make dental appointments.  Train for a half marathon, take swim lessons, go on long bike rides, go back to boot camp regularly.  Meal plan and grocery shop, actually make dinner, and make lunches that didn’t look I raided a gas station on the way to school.

Instead, I have tabs open and emails started on volunteer opportunities at school and a local community food bank.  I can’t seem to pull the trigger to tell people I can help, commit to being anywhere but on this sofa, watching these episodes, lurking on Facebook.  I have time.  I have so much time.  And I have guilt about being a stay-at-home-parent so much so that I volunteer false information to strangers, “Yes.  I’m home with my kids.  BUT I’m going back to work soon.”  Lies.

I let myself be pushed out of the microbiology lab with a sour taste in my mouth from HR and the misogynistic senior scientists.  I was happy to leave.  I got that license to teach science and I liked it when I was there, but then I had kids and the idea of spending my best hours and energy on kids who didn’t care while sending mine somewhere else was ridiculous.

I WANT to be here.  I am lucky enough to be where I want to be.

I’ve been making mistakes, though.  I spend my energy in stupid ways and so the goal, and my ability to be here and engaged with my kiddos when they get off the bus is still sub par.  I’ll get it right.  Eventually.

Do you know what this is like?  I have to open my own doors, people.  There are no small children running, arguing, crying even about who gets to push the button to open the door.  I don’t have to buckle any seat belts.  Or wait for anyone to “do it mineself,” or listen to how unfair it is that someone has a booster seat and it isn’t them.  Do you know how fast I can run an errand now?   Are you not amazed that I can go to the grocery store AND the pet store AND even get gas and no one needs to be bribed or nagged or towed along?

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Alright, so this is a ramble and I don’t know how to clean it up.  EXCEPT, that I went to see a friend yesterday.  She’s becoming a Life Coach and wondered if any of her friends would be practice clients.  Yes.  She warns me it’s not therapy, that she won’t give advice.  Still sounds good.  And within minutes of talking to her and answering her pointed questions, I’ve figured it out.  I’m nearly choked on tears and words I can not say out loud.

I miss them so much it hurts.  I am scared of not being here for them.  I am afraid of anything that might keep me from them, be it an outside commitment, a lack of energy or… an MS relapse.

I want to find my way back to me, to find something fulfilling *outside* raising my kids….and the reason I won’t commit to anything is fear.  I’m so afraid I wouldn’t have the energy left afterwards for the things that matter.  And, I’m terrified of relapsing and suddenly being unable to complete what I’ve committed to, of even having telling anyone about my MS and admitting even temporary inability.

I don’t know how to move through that yet.

But I’ve got 30-some hours a week to learn how.

The Conversation

We spent a bit more than a week far from reality, driving through Yellowstone and camping in The Badlands.  Utter heaven.  I promise to put up a dozen galleries and fill you with longing to drive away from your own lives into the wilderness.

Two and a half years ago, I cried when we drove back into town from vacation, because this is where I have MS.  I didn’t cry this time.

Earlier this summer I had set today as the day I would start taking meds as part of my trifecta of disease-progression prevention; Combine exercise, vegetables, and Copaxone. Mix.  Repeat.  Logistically, though, it didn’t work out.  Did you know the price tag for Copaxone, before insurance, is $60,000 a year?  And with insurance it’s $2,400?  Now, I didn’t even ask, but my doctor already has me being evaluated for payment assistance..which might bring the cost down to an amazing $0 a year.  But, really, how would a person pay for that?  How?

The cogs in the insurance water-wheel are working, anyway.  And now I wait to hear from a nurse, who will come to me and teach me how to do the injections.  I also am apparently expecting a phone call from someone else who has/does use the stuff already.  They try to match you up with someone of similar interests and backgrounds.  Do I really want to talk to someone else with a five-year-old and an eight-year-old, who hobby gardens until she gets lazy, binge-watches Penny Dreadful, and, well, what are my interests anyway??  No.  Nope.  Not really.

True story:  I changed into twice-worn pants from the back of the van from the road-trip debris, in my driveway, rather than wade through the bedroom to paw through my  mostly-empty dresser this morning.  Multiply that scenario times one hundred and you might understand the state of the house.

And now some nurse is going to come here.  Here.  For the love of Pete, I’m going to have to learn how to use an autoinjector in my driveway because there is no way a person can actually walk into the house right now for the Playmobil avalanche.

I hung up after listening to the obligatory facts and possible side-effects portion of the phone call.  Shook it off and went out to tell the kids their horrible fate:  The house must be cleaned.  Now.  Well, starting now anyway.  I expect this to take days.

And here’s The Conversation I had with my daughter:

“We need to clean up.”

“Why?”

“Because there is no safe way to walk in the front door and someone we don’t know is coming.” (This is an important point, because she knows we don’t clean up for real friends.  Just strangers.  And grandma, because she taught us better.)

“Who?”

“Uh. Um. … A nurse.”

“Why?”

“To teach me how to use a medicine.”

“Why?”

“Oh.  Uh.  Hmm.  Well, you know how you get a flu shot so that you don’t actually get the flu?  This is like that.  I need to take something to keep me healthy. And I need to learn how to take it…..so, um, we need to clean up.”

“NOW?!?  Can I do chores instead? Of picking up? Please?”

“No.”

And there you have it–how to talk to your kids about MS.