Food & Stuff ~ by Sam

(in which I swear once, which is not a lot, since I am talking about food & stuff)

Alas, it was not meant to be.

I really thought Marian might pull through, until I awoke one day to find nothing but two bare stalks.  I think, this time, she truly is a goner.  I am so sad.  The next time I was at the nursery, I asked what I might be doing wrong for my maidenhair ferns, and was assured that I have done exactly what I should.  It seems my home just might not be the best environment for them, for whatever reason. It was suggested that I try a different, heartier variety of fern.  We selected this lovely sliver lace fern, which i promised to not to name, just in case…then promptly name Mathilda as I was pulling out of the parking lot.  Apparently, all of my plants will be named after literary characters.
Mathilda

I am going to try to refrain from buying (or killing) any more houseplants for some time.  Instead, I will work on trying to keep alive the ones I have.

In the interest of posting about something other than houseplants ~ ‘though I do love them ~ I thought I would share some of the meals I’ve been eating.  Because no one ever does that on the internet.  It’s a totally revolutionary idea.

I know.  Like, half of you ~ more than half of you ~ already walked away.  That’s okay.  The rest of us are still here, and we like each other just fine, thank you very much.

But food. Well, you know, food and I have a storied history.  I loved food when I was a kid.  I loved some foods other people might find really weird.  I ate stuff like butcher bologna and fried brains (no, really, y’all ~ I tell my kids I’m actually part zombie, as a result of this culinary adventure), and slim jims, and those hot sausages that came in wrappers like slim jims.  I still love red beet eggs,  and my mom’s ziti and shoofly pie ~ all of which I am pretty sure I am not supposed to eat, and that is a travesty, by the way.  I ate crabs and scallops and lobster and shrimp, and clam chowder.  I mean, I grew up in Maryland.  We ate seafood.  It’s kind of a thing.

Now…well…

First, I had an eating disorder.  When you have an eating disorder, you don’t hate food.  I think that’s a common misconception.  Maybe it’s more of a love/hate relationship.  I became positively obsessed with food.  I knew everything about it.  I was obsessed with what nutritional value of everything, how many calories it had, what was the fat content, sugar content, serving size… Not that any of it mattered.  I wasn’t actually eating much of it.  I did love to cook it.  For other people.  And watch them eat it.

Then, I became (and have remained) vegetarian.  That’s working out okay for me.  I mean, y’all can have your brains.  I have to say, I am pretty much over that.  I was vegan for about 8 years, and I felt pretty good at the time, but I’ll admit, it was difficult, especially when I got pregnant with my first child.  That’s about the time I decided to start eating cheese again.  I really like cheese.

Which totally doesn’t matter.  Cheese hates me.  With a passion.  It turns out, I am allergic to milk protein.  So, some years (yes, it took years ~ many, painful years), and many health problems later, I gave up all dairy products.  I miss cheese so much it hurts ~ but you know, not as much as that feeling in my throat when I ingest it, so this is really much better.  (I’m also now allergic to shellfish, which I had already given up eating, for what it’s worth, which doesn’t impact my diet, but is a weird side note considering that I ate it as a kid, I guess.)

Also, (and, well, really, I should have thrown this part in a while ago, because it originally reared its ugly head in high school), I have IBS.  That’s Irritable Bowel Syndrome, in case you didn’t know, and, as is evidenced by the name, it is just a festival of fun times, as I am sure you can imagine.  I won’t go into detail.  I mean, it involves your bowels, being irritable.  You can figure out what that means.  Or, you know, google it, if you want to, but I really can’t imagine why you would want to do that.

So, here I was going along, doing my thing, trying to be healthy ~ and I was really making a concerted effort, too, because I had some long-standing terrible habits to break.  Habits like not eating breakfast.  Forgetting meals altogether.  Eating chocolate for a quick burst of energy to get me through to the next meal, and then not taking time for the next meal.  Eating things like the crusts of kids’ pizza, the ends of their poptarts, and the few green beans that were left in the pan, and thinking, “That was probably a meal, right?”  Drinking a frappuccino instead of lunch.

I figured this was bad for me, bad for my body, and a terrible example for my kids, and I decided to do something about it.  I started doing things like eating more vegetables and fruits.  I love roasting vegetables ~ broccoli, asparagus, brussels sprouts, cabbage ~ especially with lots of fresh garlic, balsamic vinegar and olive oil.  I love artichokes.  I don’t like fruit, but berries are good for you.  I ate berries, even though I don’t like them.  I actually like pears, and some kinds of apples, and I can eat about half of a banana, sometimes, but only half.  I was trying with the fruit.  I started drinking coconut water. You hear so much about how good for you it is.  Man, I really bought that.  I used coconut milk in my coffee drinks, instead of soy, because I know too much soy is bad for you, and I already use some soy.  I was eating whole grains.  Oh, and beans.  I was trying to make sure to get enough protein, but from a variety of sources ~ nuts and nut butters, seiten, quinoa, seeds, tofu and tempeh, some commercially available meat substitutes, and beans.  I love beans.

For some reason, my digestive issues got worse.  At first, I thought, maybe it was just that I was eating meals that were too large, so I started eating smaller, more frequent meals. Then, I thought maybe it was just that was still getting used to eating well ~ maybe my body was adjusting to digesting all those fruits and vegetables and stuff.  Maybe it was too much of a transition all at once.  I even thought maybe it was a medication side effect…or maybe it was a symptom of something else.

The truth was much simpler: my IBS was completely out of control.

So, after one doctor’s visit led to another doctor’s visit, which led to some labwork, and a referral to a gastroenterologist (and more labwork ~ with more to come), I find myself on a very restrictive diet.  I am currently on a gluten-free low FODMAP diet, and it is the most restrictive diet I have ever had.  I am forced to be obsessed with food again, which is a little bit scary, to be honest, and I have to be careful not to fall back in to old patterns.  I think the key, in that regard, is to keep eating the food.  That, and the fact that the goal this time is to keep the food in my body and maybe actually gain some weight, which is really weird for me.  But it must all look frighteningly familiar to people who  have known me through all of this, and it must be worrisome for them, too, because here I am, again, very thin (due to medication) and obsessing about food.  My understanding is that at least some of this could be temporary, and then we can start trying to figure out what foods, specifically cause problems for me.  For now…

Ah, well, it is what it is.

If you are interested, you can look up the low FODMAP diet. For me, it’s basically like this: Make a list of all of your favourite foods. Write: “DON’T EAT THESE” at the top. Now, start eating eggs again.  What?  You don’t like eggs?  Fuck you.  Eat them anyway.  You don’t eat meat, and there are only like 4 other protein sources on this list that you’re allowed to eat.  Eat the freaking eggs.

If you have IBS, or another digestive disorder, you might want to talk to your doctor about whether or not this plan might be helpful to you.  I know, I just made it sound super appealing.  (sorry.)

Here, to entice you are some pictures of things I have been allowed to eat, to prove that it is not actually terrible:
IMG_5274
Vegetable curry w/ quinoa

IMG_5304
Maple walnut oatmeal with bananas & cinnamon

IMG_5302
Baked potato topped w/ veggie chili and avocado

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Egg salad, avocado, red pepper & olives

So, maybe I make it all sound very dire, but I am eating a lot of beautiful, delicious foods.  Most importantly, I seem to be getting it right, most of the time.  Eating out is still difficult, because it’s a bit of a craps shoot.  You know, you order the potatoes, and hope they aren’t seasoned with anything your gut’s gonna hate.

Feeding the whole family is a challenge, because my needs often require a little more creative meal-planning ~ and it does get a little bit redundant, sometimes.  I’ve hit on some recipes I can make that we all like, and, at the very least, I can often make a meal from which I can easily adapt something for myself.  If not, I usually have leftovers in the fridge, because I tend to cook for more than one meal at a time, anticipating that need.  I am still learning, but I’m getting there.

In the end, if I feel better, am able to keep the foods I eat in my system long enough to actually process the nutrients my body needs from them, and do important things like socialize with other humans, take my medication and, you know, absorb it so that it actually works, I think that’s a vast improvement.  You know, when things like that start working, the hope is that I will be able to do more of the things I want to be doing.

I would say things are looking up.

Today, for instance, I was able to get up and go with Shane to help sort Girl Scout cookie orders at the warehouse, and bring back all of the cookies Kaia intends to sell this season.  I loaded and unloaded cars, grabbed a coffee, came home and practiced banjo, cooked dinner, sat down and wrote this very long blog entry.  Now I intend to clean up a bit, and try to get my PT done before bed.  It might not sound like a lot, but I think it’s not bad for a Saturday with chronic pain and a digestive disorder.  I mean, let’s be honest: there are still a lot of days when I just want to pull the covers back over my head as soon as I wake up, but, you know, I have a Girl Scout, and those cookies aren’t gonna drive themselves home.  My banjo’s not gonna play itself.  I mean, come on ~ I’ve got stuff to do.

cookies

 

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Out With the Old…

I am not going to pull any punches, 2017 was a tough one.

I know, at the end of a year, we are supposed to stop and count our blessings, and, as always, our year has been filled with those; but I would be lying if I sat down and wrote a post about how great the year has been, and pretended it hadn’t been hard.  It’s been a hard year, in a lot of ways, for a lot of people I know.

I am not talking about politics.  I know that the social and political climate has been difficult for a lot of people to navigate, and that has put real strain on familial relationships and friendships.  I know there has been a great deal of social upheaval, and stress, and anxiety, and real life consequences as a result of what is happening in the political arena, because those things impact us all every day.  I don’t want to discount that, or for anyone to think that I am not taking those issues into account ~ they are part of the reason this year has been difficult for a lot of people.  In fact, for some people, that is the primary reason this year has been so difficult; because, for some people, those issues directly impact their daily lives so profoundly that they can’t help but think about them every single day.  So it’s hard for me to come here and say, “but that’s not what I’m talking about.”  Perhaps what I meant to say was, “That’s not all I’m talking about.” I would be remiss not to mention it at all.

There were deaths in families, and deaths of long-admired celebrities, as there always are.

Here, in California, we recently had the fires, and so they are fresh in my mind, but all over there the world, there has been disaster, and violence, and so much suffering, anguish, and frustration.  It’s difficult to even know what to say.  Some days, it felt like the world had gone mad.  It was hard to want to read the news ~ there was a genuine fear there.  What else could possibly have happened?  

On a very personal level, it’s been a difficult year for me, in regard to my health.  If I were to say, “I don’t talk about my health much,” you would probably think I’m being ridiculous.  It seems I talk about my health all the time.  But, really, I don’t.  Or, perhaps, I do more than most people, but there’s a lot I keep to myself.  So, when the CRPS started flaring up, I didn’t mention it, because, frankly, I feel like all I ever do is complain about my health issues, and, quite frankly, people must be tired of listening.  Nevertheless, it did start flaring up.  I figured it was probably because I had slacked off on my exercise routine.  I wasn’t doing my PT every day, and I wasn’t walking as much as I should.  Oh, and also because I had cut the dosage of my daily medication down just slightly because, in combination with the other medication I take daily ~ for that other issue that I am still reticent to discuss, because I STILL don’t have a diagnosis, so I feel weird about actually saying much about it ~ it was making me VERY SLEEPY; but only at night, after I took it, and upon waking, but this matters, when you have school-aged teenagers, who might still need your help, sometimes…and they do, sometimes, and I am their mom, so I want to help. (Do I win an award for that run-on sentence?  I think it was fairly spectacular, ‘though I am not convinced it was actually a sentence.)  So, I decided, first, to try doing all of the Right Things.  I exercised.  I took my medication.  The CRPS kept flaring.

I did the logical thing.  I kept going to my class taking kids to school, doing chores, attending performances, meetings, shopping, driving all over town, picking up, dropping off, running errands… You know, all of the usual “mama” stuff.  I kept tie-dyeing things, and playing my banjo when I had time, but it kept feeling like I had less and less time.  Everything felt like it took so much longer.  You know, because it did.

While all of this was happening, other things were happening, too.  I wasn’t the only one having a hard time.  Other people I knew were having hard times, too; and, while I am not at liberty to share other people’s hard times, you know, when people you care about are having hard times, you want to help, and you probably try to, and I hope that I did.  I think, at least, I tried.  I keep trying, and I will keep trying.  I feel like, a lot of times, I fall flat on my face, or my back.  Sometimes, I feel like I started there, and, if we are both there, maybe we can just lie there, hold hands, look at the stars, and know that, whatever is going on right now, it will all be better someday.  It will.  I promise.  It always is.

Also, while all of this was going on, I was having increasingly terrible digestive issues.  I’m not going into detail, because nobody wants that (and also because I don’t have all of the answers yet), but, basically, it breaks down like this:  I was diagnosed years ago with IBS.  I hadn’t had a lot of symptoms for a very long time.  Then, in recent years, I started having trouble again.  This year has been the absolute worst.  (This is NOT the undiagnosed issue I’m not talking about.  That’s still something else.  Sorry to keep being cryptic about that.  If you know me, I’ll probably talk to you about that ~ I just feel weird putting stuff down in writing and out on the internet about that one.)  So, I saw a gastroenterologist who has put me on a low FODMAP, gluten-free diet.  I was skeptical, but cautiously optimistic.  I have to tell you, after two weeks on the new plan, not only are my digestive problems virtually a thing of the past ~ as long as I stick to the plan, which is very restrictive, and difficult to stick to when I am away from home, and can’t cook my own food ~ but, now that my digestive issues are under control, the medication I am taking for that other (cryptic) issue seems to be working well again, because my body is actually able to absorb and process it.  I still need to return for a couple of tests to make sure we aren’t missing anything, but the good news is, things are much better.

So…back to the CRPS:

While I was busy getting everything else under control, it was still flaring out of control. To the point that I was having difficulty getting around to complete simple tasks like a trip to the grocery store.  Pain was interfering with my ability to concentrate, focus, sleep, eat, remember things.  It was bad.  Worse than it had been in a long time.  I contacted my neurologist and my pain management doctor ~ to see if there was any way we could change either medication, since, in combination, they made me SO SLEEPY.  To make a long story short (and remain as cryptic as possible), neurologist said something like, “This medication is controlling your symptoms, so NO.  We won’t be changing that.”  Upon reviewing that situation, we all agreed, this was a good plan.  After an examination, my pain management doctor determined that the CRPS was not just flaring up, it was progressing.

As you can imagine, this is not the news I was hoping to hear.  He scheduled me for a lumbar sympathetic nerve block, as soon as possible, in hopes that I would get some pain relief, and that we might stop any further progress.  That would be December 21st, and I would need to rest for several days after the procedure.  Perfect timing.  I hadn’t been able to accomplish much shopping, due to pain, and now, I had to be completely done by the 20th, so I could rest until Christmas Eve.

But, there was nothing else we could do, and just that little glimmer of hope that, maybe, we could stop it from progressing…or, at the very least, get a little bit of relief.  So, I agreed.

It’s been 10 days since I had the nerve block.

I think I must be in that “might get worse before it gets better” phase.  This hasn’t happened to me before, but I am trying to be optimistic.  They say you might not know until at least two weeks after how effective it will be.  So, I am waiting.

During all of this, there was this whole swirl of life events going on around us, and, quite frankly, I couldn’t keep up.  I tried.  I tried to attend to events I could attend.  I went to the performances and parties, I smiled, I chatted, I tried to make small talk, but, you guys, I am an open book.  I’m not good at this.  I am a terrible liar.  I don’t just wear my heart on my sleeve; it’s stamped all over my face.  Which is weird, because I’m an actor, right; or, well, maybe I was, many years ago.  But I think that’s different.  I like to think, in my real life, I’m not assuming a character when I interact with people for whom I actually care; and so, it’s different.  In real life, I am an open book.  If I am upset, or angry, or tired, or sick, or sad, or anxious, or lonely, or in pain, the whole world will know just by looking at me.  I thinkI have been every one of those things this year.  I suppose we all have, at some point, every year.

Some great things happened this year, and others are still in the process of happening.  Justice finished her Child Development certificate, and CPR and first aid training, and was accepted to the Music Performance program at her college.  Hallie is a Senior in high school this year, and is busy earning A’s in classes like AP lit and Digital Imaging (things I couldn’t even grasp in high school ~ and let’s review the fact that I didn’t make it through Senior year of high school, so kudos to kids who do), and looking into art schools for after graduation.  Kaia finished middle school and moved on to high school where she is participating in and loving Marching Band. She finished her Computer Science class early, and was allowed to move on to the AP course in independent study.   I took my first ever ASL (American Sign Language) class, and finished with an 87%, which is a B, but a high B, so I’m cool with that.  I probably can’t take another class just yet, but I will keep practicing what I have learned, so I don’t get too rusty before I can continue.  I do plan to continue.  Shane has worked on so many projects that I just can’t name them all ~ and I probably shouldn’t here ~ but I can say that he was recently able to purchase a used 1999 Jeep Cherokee 4×4 that appears to be in very good condition (fingers crossed).  I bought him a repair manual, so he can maintain it.  It’s a vehicle he’s wanted for a long time, and it means that, with Justice’s busy schedule, and with us on the brink of having a 4th driving in the household, we finally have a 3rd car.  I think it should make think easier for everyone.

There have been weddings, and engagements.  There have been children, grandchildren, nieces, nephews, grandnieces, grandnephews ~ oh, heavens!  Not all mine!  I just mean, in the world, there have been these things. In lives of my friends and family members, I have watched them unfold.

So, as I look forward ~ ever forward, never back…well, occasionally, wistfully, back, but never, ever with regret ~ it is with the very highest of hopes.

Here’s to 2017, and all of it’s challenges. Here’s to the tears we’ve wept, and the losses we’ve suffered.  Here’s to the lessons learned, and to every victory, every happy memory, every blessing and every joy this year has brought with it, as well.  For some, this might have been the best year yet.  For some of you, this was the year you were married, or the year your child was born, the year you finally bought your first home, or brought home the pet that filled that hole in your heart and made your life complete.  So here’s to 2017, for everything it’s been to every one of us.

2018, we see you on the horizon, and we have pinned our hopes on you.

We’ll see you soon.

 

 

Nerve-Wracked ~ by Sam

Peace12:21:17.JPGIt’s the evening of December 21st, and I am not rushing around checking things off my shopping list.  I’m not baking sweet treats, wrapping gifts, cleaning up after our annual Tree-Trimming party (or planning for yet another very late one, because we didn’t get it together and plan one). I’m not planning to receive out-of-town guests, or planning my out-of-town trip for Christmas (‘though we will be heading out of town soon after).

Nope.  Not doing any of that.  Which is weird, because, normally, this close to Christmas, I’d be running around like that chicken you always hear about.  Right now, I’m lounging on the sofa after a nerve block at 2:30 this afternoon.  I debated posting about what’s been going on lately.  I feel like I’m THAT FRIEND.  You know the one.  The one that talks too much about their health problems?  And so…I just didn’t really say anything about this for a while.  Honestly, when the CRPS started flaring up again, I thought, “Well, I haven’t been walking every day, and I haven’t been great about doing my PT, and I had to lower the dose of my medication because it interacts with the medication I have to take for that other thing, and makes it really hard for me todo things like stay up late, and get homework finished, or help kids with whatever they might need, or, you know, wake up in the morning and make sure everyone gets off to school without a hitch….so…it makes sense that it’s flaring up now.”  I decided to try fixing those things.  That should work.  Right?

But it didn’t.

So, when I contacted my pain management doctor and explained the situation, he, naturally, wanted to see me.  After assessing the situation he determined it wasn’t just flaring up.  It was progressing.  The pain was moving much farther up my leg than it had in the past, and that is not a change we want to see.  We discussed various options.  Since I can’t stop taking the other medication, upping the dose of the medication I currently take for CRPS is not a great option, since it is already, in combination with the other med, making me very sleepy at night (which, at least, is the right time to be sleepy ~ and, hey, it’s a solution to my longstanding battle with insomnia).  Adding another medication at this time is also not at the tops of our list since a) I currently take two daily meds, and b) the other meds we might consider adding next are things I had already tried, without much success, as treatment for fibromyalgia symptoms years ago, so he doubts they would be helpful here.  Because we have had success with lumbar sympathetic nerve blocks in the past, it seemed like a no-brainer.

The only downside was the timing.  Due to both the amount of pain I was experiencing, and the fact that the CRPS was progressing and we needed to try to nip that in the bud, it was important that we get me in for the nerve block ASAP.  Right now.  You know, at Christmastime.  Me.  Right now. At Christmas.  Because it’s not like there’s other stuff I would rather be doing.  Like going to parties.  And hosting a party.  And baking stuff for teachers, and friends, and family.  And decorating my home.  And buying and mailing gifts. And going to Mass.  And attending shows and concerts. And driving through all of the lights, and walking through the Zoo Lights, and visiting with friends, and shopping.  Did I mention shopping?  Shopping?  Shopping with my kids!  I want to be shopping with my kids.

But instead, I am sitting here, resting, for several days, in hopes that this nerve block does the trick; because, quite frankly, if it doesn’t, I’m back to not doing a lot, which is kind of what I was doing before, in case you hadn’t noticed.

By the way, if you had noticed, recently, that I kind of had my head in the sand, well, now you know why. Things started getting bad while school was in session.  So, I suddenly found myself needing to juggle kids’ schedules, my schedule, Shane’s schedule (you know, the usual stuff), but with a lot more pain than usual.  I am used to pain.  I have pain that I manage ~ hence the pain management doctor ~ but that’s the thing: we work to keep it manageable.  Suddenly it was totally unmanageable pretty much all of the time.  The problem was, I just didn’t have the time to stop and do anything about it.  I had all these things I needed to do (or, at least, that’s what I kept telling myself), so I kept doing them.

I guess it sounds like I’m whining.  I guess that’s because I am.

See…that’s why I avoided talking about this.  It’s hard to do without sounding like that.  Ugh.  I feel bad for dropping so many balls.  I did not give any teacher gifts.  I forgot to RSVP for virtually everything.  Most nights, I looked up and went, Oh, crud.  It’s like 8pm, and I haven’t even started dinner.  Then, we ate dinner (such as it was) at some time between 8:30 and 10:00.  I know.  I totally rock.  More often than not, we ate leftovers, or I told people dinner was “catch-as-catch-can.”  Again.

This isn’t coming off the way I want it to.  It’s frustrating.  I don’t need people who read this to come back saying to me, “I’m sorry you have pain,” or “I’m sorry you have to deal with that.”  I mean, I totally appreciate that sentiment, and I believe that you mean it.  What I mean is, I am not fishing for that.  I just…What do I want?  I guess I want people to understand what’s been going on with me, and why I have been kind of “out of it” recently ~ and that, hopefully, things are going to get better.

I decided to sit down and write this because I figured people have noticed.  I’m a mess.  I am running behind on everything.  Now, you know why.  So, if you’ve been fed up with me recently, I apologize.  I probably should have explained sooner what was happening.  In some ways, it’s just all part of the same old thing, and I guess maybe I get tired of explaining ~ I guess I think people get tired of hearing it, too.  But maybe you can understand that, if I say, “It’s been a rough day (or week, or time, or whatever I might say that sounds similar to that)” or even if I say nothing, but I just don’t do a great job of keeping up with things.  Maybe you can think back on this post, and think to yourself, “Ah, yeah.  I get it.”  Maybe we can all just sort of do that for each other.  Just try to assume that we’re all trying our best all the time, and that, if we aren’t getting things done, or aren’t getting them quite right, there must be a good reason.

Moving forward, I’m hoping to end this year, and start the next, on the upswing.  I don’t want to be just sitting around doing nothing, so I think maybe I will sit here and work on some scarves, and practice my banjo, instead.  Maybe I’ll read a book.  I’ve already managed to do some online shopping.  It was late, but at least I got it done.  The nerve block went well.  I mean, we won’t know for a while whether or not it actually did the trick, but at least I didn’t pass out or anything.  Things are already looking up.  Now, if only I could figure out how to cook and clean while lounging on the sofa.

The Girl Who Lived ~ by Sam

17 years ago today, on March 28th 2000, I was 29 years old.  Gosh, it seems like a lifetime ago.  Shane and I lived in the upstairs apartment at the back of our building of six units, which faced another, identical 6-unit building.  Our daughter, Justice, had recently become a big sister for the first time, to Hallie, who was born at 11:58 pm on March 17th ~ St. Patrick’s Day! ~ on the front seat of our Honda Civic in front of Kaiser Permanente Hospital’s Emergency Entrance in Woodland Hills.  We almost made it to the hospital in time, but, what can I say?  Hallie was in a hurry to be born on St. Paddy’s Day.

When I think about that little baby, my first impressions are of a strong, alert child, right from the word, “go!”  I had a hard time, hemorrhaging and requiring a couple of courses of pitocin to get the bleeding under control upon being transferred up to a recovery room, but not our little baby.  Hallie was eager to nurse, wide-eyed, alert and responsive.  I remember lying on the sofa the day we brought her home, with Hallie resting on my belly.  She just wriggled her way up my body all by herself, like a tiny little mountain climber.  I know, I know ~ babies do this ~ but we were so impressed right from the start by her strength, her grip, and how awake and aware of the world around her she was.  She just seemed interested in everything.

On the evening of March 28th, baby Hallie was just 11 days old.  Justice was asleep her room.  She would have been 2 years and about 4 months old.  Shane was working at his desk in the living room, and I was napping on the sofa.  Hallie was asleep in the cradle my dad had built, which was in the room with us.  We always had our babies sleep wherever we were.  So, we kept the cradle in the front room.  I learned later that Shane had somehow become aware that something was wrong with Hallie.  Maybe it was the absence of breath sounds.  Maybe it was a choking sound.   Maybe he saw something out of the corner of his eye.  I don’t know, but I thank God that something alerted him.  I awoke to the sound of him yelling her name.  He was holding her, her face was bright red, mouth wide open, like she should be screaming, but there was no sound.  I could see the terror in both of their eyes.  I don’t even think I was fully awake before I was across the room whisking her away and saying, “Call 9-1-1!”

Having worked in a preschool classroom, I had, at least, been trained in infant CPR.  I went in to auto-pilot.  It’s hard for me to put in to words what happened next.  I can remember it all so clearly, like I am watching a movie, but it’s difficult to articulate.  I remember checking her airway.  I remember running through all of the steps in my head ~ which I remembered then, but don’t now ~ I remember performing the infant Heimlich maneuver, and feeling a tremendous sense of relief when she coughed up a huge chunk of mucous…and then a renewed sense of panic when, instead of starting to breathe, my tiny little baby went limp and blue.

I remember that Shane was on the line with the 9-1-1 operator by this time, and that she remained on the line with him until we left for the hospital.  I remember that, at some point, little Justice was awakened by the commotion, and wandered out.  I remember that the paramedics from the nearby fire station arrived within two minutes that felt like an eternity.  I remember.  I remember loosening her clothes, jiggling her limp little limbs, begging her to breathe.  I remember Shane’s voice pleading with her to breathe.  I remember repeatedly thumping the soles of my baby’s tiny feet, so she would gasp for air, and hoping against hope that, eventually, those tiny little gasps would “catch,” and she would start breathing regularly again.  And I remember that, eventually, miraculously, she did.  Right before the paramedics arrived.  She was breathing, albeit shallowly, by the time they got there, but, since she had not been, of course, a trip to the ER was still in order.

I remember when the paramedics explained to me that I couldn’t hold her on the way to the hospital.  That I had to hand her over to them.  That she had to be transported by them the way any patient would, but I could ride inside the ambulance with her.  Shane and Justice could follow in the car.  I remember the look on Shane’s face when he realized he had to let them drive away with his baby.  I remember how tiny she looked inside the ambulance on that huge gurney.

I remember sitting at the hospital while they checked her over and over and questioned us about what had happened, and found no explanation.  No explanation.  And just…sent us home.  I remember the diagnosis.

ALTE

A.L.T.E.

I remember searching for information to try to understand what had happened to my child and finding that it stood for “Apparent Life-Threatening Event.”

As if we couldn’t have guessed.

I remember months later when I had to fight for the insurance company to cover that ambulance ride and hospital visit, because, they told me, the incident “wasn’t life-threatening.”

*ahem*

“Please refer to doctor’s diagnosis.  A.L.T.E. – Apparent Life-Threatening Event.”

I remember how, at about two months, she suffered another episode of the same type.  Still with no further explanation.

I remember how, years later, she developed asthma, and often suffered respiratory complications such as bronchitis or pneumonia.  I remember the time she had croup, and developed stridor, and her little chest would cave in, instead of expanding, when she took a breath, and my heart would ache for her.  I remember other parents thinking I was being “overprotective” when I said it was important for her not to be exposed to respiratory ailments because she was at high risk for respiratory complications.

But, more than anything, on this day, I remember my child’s beautiful eyes, smile, voice.  I think of all of the amazing things this almost grown person has achieved.  I think of the art my child has created, the roles this young actor has played, all the music and dances and stories…and everything yet to come.

Hallie was due on March 27th, born on March 17th, under rather unusual circumstances.  Then March 28th came along and did its best to wrestle her away from us.  Every year at this time, I can’t help but pause and count this particularly incredible blessing.

 

To Start Anew ~ by Sam

2017 finds us all poised at the breaking dawn of a fresh, new year.  A year full of hope, and promise and possibilities.  The problems, the struggles, the tears, the regrets, the trials, the toils of 2016 and before lay behind us, and what lies ahead is infinite and unknown.  People encourage us to move only forward, to cast off the negative, never looking back; but, like Lot’s wife, we find ourselves compelled to cast that glance aft, and then…

Then what?

Isn’t it our history that informs us?  Isn’t it our past that makes us what we are today?

And so, I offer this advice for the New Year: Don’t attempt to make a brand new start, as people suggest.  That is far too tall an order for anyone, and destined for failure.  Sure, go ahead, move forward.  But don’t just put one foot in front of the other and trudge blindly on.  Move forward informed by the past, strengthened by your experience, hardened in your resolve ~ battle-scarred and imperfectly-perfect, as are we all ~ ready to conquer whatever life happens to throw your way.

In that spirit, I give you my Resolutions for the New Year, in no particular order:

In 2017, I resolve to:

Be Kind.
Listen.
Visit Places.
Make Things.
Plant Things.
Play Music.
Take Care of Myself.
Cook.
Write.
Read.
Dance.
Laugh.
Sing.

I might clean some stuff, too.
Maybe.

I think I can handle that.

Wishing you and yours Peace, Love, Health & Happiness in the New Year and beyond.  With all of those things, how can we possibly go wrong?

New Year’s Eve Eve -by Sam

As I find myself looking back on the past year, I can’t help but think, “It’s been a rough one;” and the thing is, I’ve been here before. It’s starting to feel like I say this to myself at the end of a lot of years. You might be thinking, Oh, that must be a chronic illness thing. Some of you might be thinking (and some might be irritated about it), Is this about all of the famous people who have died this year? Is it about politics?

You know what, it’s not.

Well, or, maybe…maybe those things are all a little bit harder to take because everything is a little harder to take because there’s just always this underlying…well. Things have been difficult for our little family, dear friends and readers. The thing is, see, I don’t…well, this goes back to that complicated part of my last post, in which I talked about how I don’t talk about all of my business, because it’s not solely my business. So, I can’t just put it all out here for the world to see. In fact, I can’t put it all out anywhere, so, I am just kind of alone with it, and that’s very, very difficult for me. But I guess it’s normal, too.

What I mean is, you know, life’s not always a bowl of cherries. Or, well, maybe it is. But, maybe, sometimes, it’s not just a bowl. Maybe, sometimes, it’s a huge, steamy, rotten, mess of moldy cherries somebody bought a really long time ago, and no one ate, and they’ve been fucking sitting in your favourite chair for so long that they’ve started to decompose. Then, one day, you come home, sick and exhausted, and overwhelmed, unable to work, and in debt, and thinking, good god, if one more thing happens, it will put me over the edge!…and you flop down in that chair just as the phone rings to tell you that someone, somewhere needs you to come, immediately, to do something, or else the world will collapse, because, really, you’re supposed to be a superhero. And your coffee spills all over your lap, causing a chemical reaction with the rotten, moldy cherries, making their effect seemingly permanent.

So, now, everywhere you go, for the next two or three years (at least ~ jury’s out. This could be permanent) the rotten cherry funk is in your clothes, your skin, the very fiber of your being, maybe even your soul. It’s still in the chair, too, so other people in the household are going to be exposed, and there’s nothing you can do. It’s terrible stuff. It makes everyone miserable, and no one knows why, and no one knows how to talk about it, because no one even really knows what it is.  It is just so incredibly awful, so unexpected, so utterly preposterous.

And people can tell something is wrong, so they ask.

They keep asking.
“How are you?”
“Are you okay?”
“How’s the family?”

And, you know, society has these conventions, so you have to say,
“Oh, yeah, I’m fine.”
“We’re fine. “
“We’re great.”
“Everything’s good.”

But you know you’re not fooling anyone. You’re a lousy liar. You always have been, and you always will be.

To further complicate things, in the meantime, all of the normal, everyday things that happen in life keep happening around you and your moldy-ass cherries; and, you know, they’re totally normal things. Things that involve other people, but actually aren’t a huge problem. They’re little things, normal things, easy things that might be sort of challenging or, you know, require an adjustment in the way you think or do things; but they aren’t a big deal. They aren’t bad. They aren’t cause for strife or anguish or concern. It’s just that, sometimes, these people, who don’t know about your moldy cherry situation, they just don’t get that, and they think it’s all about them. Maybe we all think it’s all about us, all of the time. I guess that’s just the way humans are made.

And then, if you’re super lucky, you get not-a-diagnosis (which has nothing to do with the cherry situation, by the way, but conveniently occurs right on top of it), and they say to you, “Just keep on this band-aid*, and don’t take it off! I mean…we really don’t think you’ll bleed* profusely if you do, but DON’T TAKE IT OFF….just in case.” So you tell them, “Hey, you know, that’s…um…great and all, but…uh…I’d really like to know why I am having these symptoms.” And they tell you that what you can do, if you really want a diagnosis, is take off the band-aid, hook yourself up to a monitor for a few days that will cost roughly 8-gazillion bucks* and hope you bleed a lot during that time, so they can record it and figure out what’s happening. “Uh…” you say, “That sounds sort of…um…expensive…and dangerous…” They confirm that this is true, and so, you decide to keep your band-aid and lack of diagnosis, so, when people ask you what particular health problem you are having, you can now, officially, say, “Fuck if I know, man.”

So.

When I say it has been a hard year, I mean it has been a hard year. I mean it on a very personal level. I can’t say I don’t want to talk about it. I want so very much to talk about it. I mean, come on, guys, I’m a talker. It’s just, well, I can’t, because you’re not my therapist. I say I am alone with my problems, but the truth is I can go talk to a therapist, and so, at least there is a place where I can unload all of this bullshit, so I don’t have to unload it all on my family and friends, and that is good, I guess.   I mean, it’s expensive, and I will always have trouble spending money, because, no matter how much money we make, and no matter how many times I am told not to feel guilty about my current inability to work outside the home, I will always be made the way I am. It’s hard for me to spend money ~ especially money I did not earn. Also, I would rather talk to friends. Or even strangers that, you know, I’m not paying to listen to me. It just feels more natural, somehow. Therapy has never felt natural to me. I guess that’s just me. Also, it’s expensive. Did I mention that it is expensive? I’m kind of a cheapskate, in case you have forgotten.

Anyway…

I sat down and wrote this up today for two reasons:

One) I plan this year to get back to writing, and this seemed like a logical place to start. I can start journaling. Honestly, as I sit here writing, I don’t even know if I plan to share this with the world. I am writing this in a Word doc on my MacBook Air, and it may never see the light of day. If you are reading it, we will know what decision I made. Hopefully, writing this way will lead to other writing. Who knows? Maybe I will take a class. God knows I could use a little more class. (Ha. See? I’m funny)

Two) I need to get back to being me this year. I am not able to carry the weight of knowing I have this secret funk lurking in my life; and, even ‘though I cannot share details about it, I think just sharing the fact that there was a Thing, and it was Bad, might help. Just so people know that I actually have been dealing with something. You know, because I know people must have been wondering. I feel like I haven’t been true to myself. Like I have been presenting a façade to the world, and I don’t do that well. So, I guess this is me, very vaguely, coming clean. ish. sorta.

I know that, if I share this, people will, most likely, start all kinds of wild speculations about what The Thing was. Can I ask you a huge favour? Don’t. Please. Just…stop it. If it was your business, it would have happened to you. I know that’s a tall order. But, you know, it’s also a respect for privacy thing. I’m asking. I would do the same for you.

So, I guess, in a way, this is me, getting a jump on my New Year’s Resolutions.

I’m off to a decent start, really, if you count yesterday. I talked to my mom and dad, and my cousin, Alice, very briefly, on the phone. Left a message for one of my very best friends (will call another today). Texted back and forth with my big brother (because we are just so cool and modern like that), and set up a time to call and talk (we penciled each other in ~ I’m having my people call his people ~ we are ever so Important). Talked on the phone with my big sister, while going for a walk around the neighbourhood, thereby killing two birds with one stone (my least favourite idiom ~ so gruesome!). I also cleaned the bathrooms, dust-mopped all the hard floors, did some laundry, tidied up the house, worked in the yard a little, emptied the rain barrel (just in time for today’s rain), made a nice dinner, did my physical therapy, practiced banjo, and baked the last of the froggers. Then, I took a hot bath with Epsom salts, because some of that was a lot of work, and sat down to watch an episode of Major Crimes with Shane. I even worked a little bit on a ruffle scarf while watching.

This morning, I awoke to find the rain has come to wash away the dregs of 2016, and not a second too soon. So, today, I’ll balance the checkbook, and make sure all of the bills are paid. I might even make a pot of soup. Seems appropriate for a rainy Southern California day.

Wishing you all peace at the end of this year, whether or not it has been a rough one for you; and wishing us all a bright and beautiful New Year. I think we all deserve it.

 

*For clarification purposes: the terms “bleeding,” “band-aid,” and “8-gazillion dollars” are as analogous in this piece as cherries. I am not bleeding. Well, not at the moment. Give me time. I am very accident-prone. I do have a chronic health problem that requires constant medication. I would rather not be specific.  It’s a thing I do.