First off, I'm sorry.
I really, really, really want to be done writing about sleep. It's all I've written about for the last six months (okay, this is only the third post in six months, but still...).
Sleep, however, continues to elude me. Initially, the sleep doc decided against a sleep study because I don't exhibit any signs of sleep apnea or restless leg syndrome. The thought was to not do an expensive test if there wasn't anything meriting it. I can get behind that. But after several months of behavioral approaches with very little improvement, it was decided a few weeks ago that I should be scheduled for a sleep study. Plus, I do exhibit symptoms of periodic limb movement disorder (PLMB).
So here's what a sleep study looks like:
Okay, I should clarify. This is what the beginning of a sleep study looks like. Why am I smiling? Well, there are a couple reasons:
1. This is ridiculous. I knew I'd be "hooked up" to some shit, but come on. How is anyone supposed to sleep at all with this get-up?
2. If I didn't smile, I would cry. I rolled into the sleep study last night at 9:30, the appointed time, barely able to keep my eyes open. I've barely slept in a week. My sleep vascillates between waves of: kinda-okay to downright-shitty. I'm squarely in the latter phase. One of the downfalls of this latter phase (there are many) is that I cry at almost anything. I get, well, a touch emotional when I haven't slept well in weeks.
So here I am hooked up to 20 or so wires (each wire on my head required a massive amount of paste in my hair - I really regret not getting an after shot this morning), a tube in my nose, a monitor on my finger, two wires running to my legs. I was told I would be video recorded for the night. Isn't that reassuring?
Somewhere in all of this is the idea that you might actually sleep, and maybe some people do. I tossed and turned until after 3am, dozing off briefly a few times but never actually settling into sleep. I had to call Amy, my lovely sleep tech, in because first I was freezing, then I was sweating to death, then I had to use the bathroom (yeah, you know it was ridiculous). After all that nonsense I finally slept for a little over two hours.
Did they get what they needed? Will someone be able to tell me what the hell is going on after that spectacularly poor night of sleep? I have no idea.
The optimist in me thought I would roll out of the sleep study, go home, get ready for work and proceed to have a "normal" day. Both of my bosses took one look at me and said, "Why are you here? Go home." I resisted for a couple hours and then gave in. A crappy night of sleep is my norm, but last night was something else entirely. It felt like a strange performance gone wrong.
You're given all the parameters, the dos and don'ts and encouraged to move through your nighttime routine to hopefully attain what is a "normal" night of sleep for you. Part of me thought, hey, I'm going to sleep in a quiet, completely dark room with no children waking me up... maybe I will get a good night of sleep! But then I got there and there was no window in the room (this freaks me out), it was clearly a hospital room (was hoping for some homey touches), the bed was horrifically uncomfortable, I was being monitored and videotaped, a sleep tech could come in as necessary to adjust wires or request over the speaker that I change sleeping positions, and I was uber-wired and could barely move without tearing said wires off.
I felt like someone's science project, like a lab experiment gone wrong. The entire situation was so bizarre; I had entered the level of exhaustion that left me with two options:
1. Smile (okay, maybe with a touch of delirium)
2. Cry
I hope that in 10-14 days I can tell you that this little experiment was worth it. In the meantime, I'm going to bed.
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Tuesday, May 19, 2015
Monday, January 12, 2015
And Then There Was… Slightly More Efficient Sleep
That's about as good as it gets these days.
Truth: The last few weeks have been terrifically difficult.
When the good doc told me I would need to sleep deprive myself further--in order to sleep better--she wasn't kidding. At the time, I wasn't thrilled to begin this sleep schedule a few days before Christmas. I wanted to enjoy the holidays, not slog through them in a zombie haze. However, with the way the holidays fell, I only had to work one day per week for two weeks. This was a blessing.
I've been a functional insomniac for nearly six years. Despite every doctor I've seen telling me things would get worse before they improved, I still scoffed at their words. How much worse could it get?
Oh, friends. It can get worse.
But let's start with the good news: At my appointment last week, I had improved my "sleep efficiency" by a great enough percentage that the doc granted me a 15-minute increase to my sleep schedule. This means I now get to crawl into bed each night at 11:15 as opposed to 11:30. It may seem insignificant to you, but it took all I had not to burst into tears of joy when this was announced.
It is so difficult to not go to bed when you are beyond exhausted. To put the kids to bed, look at the clock, and realize you still have, at a minimum, THREE MORE HOURS until you get to join them in slumber. It feels horrifically unfair. It goes against everything my body is shouting at me (You're tired! Go to sleep! Why are you up?!?).
What else is there to do, though? I've tried it all, and now will try this.
And, by the way, the only reason my sleep efficiency has improved is because I am not allowed to go to bed or get up when I want to. Pre-sleep schedule I was in bed for an average of 9 hours a night, only sleeping about 6. Currently, I am allowed to be in bed for 7.25 hours per night, and am sleeping less than 6.
So I am actually getting less sleep now than I was when I began this treatment. But it's more efficient.
It sounds terrible, and it is.
There have been days where I can't get behind the wheel. I am so tired I don't trust my reaction time. I tell Vinny to stop me if I try to leave, because 10 minutes after I decide I am in no shape to drive, I will have forgotten that I ever had that thought and will try to leave.
Yes, that's another really fun part of sleep deprivation. I am suffering from a serious case of Can't Remember Shit (CRS). I've experienced CRS in the past, most severely during my pregnancies. But this is worse than that. This is like having absolutely no short-term memory whatsoever. Vinny vacillates between finding it hilarious, annoying, and concerning. I think. It's hard to remember…
So all of this to say that progress is slow. Yes, there is progress. I cling to the tiny bits of progress because without them I would be even more of a crazy mess by now.
What is shifting? Well, when I go to bed I fall asleep much faster, almost every night. I stay asleep for longer stretches, sometimes until 5am. This is major. Sophie was sick for a stretch after Christmas, waking me up each morning around 5:30, and that has continued to be an off-and-on trend, enough so that when she doesn't wake me up at that time my body decides to do it anyways.
I am getting, on average, about 5.5 hours of sleep per night right now. It's not ideal, at all, but it is "better" sleep.
For the foreseeable future, I will continue to slog through my days in a zombie haze. I apologize if we've spoken, hung out, emailed, or otherwise communicated in any way, and then I had absolutely no recall of it later. I swear I am not ignoring you or failing to pay attention to what you say. I am failing to remember it later, and it's frustrating, embarrassing, and, hopefully, not going to be an issue much longer. I have so appreciated everyone's patience and kind words through this. Thank you, thank you.
Truth: The last few weeks have been terrifically difficult.
When the good doc told me I would need to sleep deprive myself further--in order to sleep better--she wasn't kidding. At the time, I wasn't thrilled to begin this sleep schedule a few days before Christmas. I wanted to enjoy the holidays, not slog through them in a zombie haze. However, with the way the holidays fell, I only had to work one day per week for two weeks. This was a blessing.
I've been a functional insomniac for nearly six years. Despite every doctor I've seen telling me things would get worse before they improved, I still scoffed at their words. How much worse could it get?
Oh, friends. It can get worse.
But let's start with the good news: At my appointment last week, I had improved my "sleep efficiency" by a great enough percentage that the doc granted me a 15-minute increase to my sleep schedule. This means I now get to crawl into bed each night at 11:15 as opposed to 11:30. It may seem insignificant to you, but it took all I had not to burst into tears of joy when this was announced.
It is so difficult to not go to bed when you are beyond exhausted. To put the kids to bed, look at the clock, and realize you still have, at a minimum, THREE MORE HOURS until you get to join them in slumber. It feels horrifically unfair. It goes against everything my body is shouting at me (You're tired! Go to sleep! Why are you up?!?).
The dreaded daily sleep log - to track my sleep "efficiency." |
What else is there to do, though? I've tried it all, and now will try this.
And, by the way, the only reason my sleep efficiency has improved is because I am not allowed to go to bed or get up when I want to. Pre-sleep schedule I was in bed for an average of 9 hours a night, only sleeping about 6. Currently, I am allowed to be in bed for 7.25 hours per night, and am sleeping less than 6.
So I am actually getting less sleep now than I was when I began this treatment. But it's more efficient.
It sounds terrible, and it is.
There have been days where I can't get behind the wheel. I am so tired I don't trust my reaction time. I tell Vinny to stop me if I try to leave, because 10 minutes after I decide I am in no shape to drive, I will have forgotten that I ever had that thought and will try to leave.
Yes, that's another really fun part of sleep deprivation. I am suffering from a serious case of Can't Remember Shit (CRS). I've experienced CRS in the past, most severely during my pregnancies. But this is worse than that. This is like having absolutely no short-term memory whatsoever. Vinny vacillates between finding it hilarious, annoying, and concerning. I think. It's hard to remember…
So all of this to say that progress is slow. Yes, there is progress. I cling to the tiny bits of progress because without them I would be even more of a crazy mess by now.
What is shifting? Well, when I go to bed I fall asleep much faster, almost every night. I stay asleep for longer stretches, sometimes until 5am. This is major. Sophie was sick for a stretch after Christmas, waking me up each morning around 5:30, and that has continued to be an off-and-on trend, enough so that when she doesn't wake me up at that time my body decides to do it anyways.
I am getting, on average, about 5.5 hours of sleep per night right now. It's not ideal, at all, but it is "better" sleep.
For the foreseeable future, I will continue to slog through my days in a zombie haze. I apologize if we've spoken, hung out, emailed, or otherwise communicated in any way, and then I had absolutely no recall of it later. I swear I am not ignoring you or failing to pay attention to what you say. I am failing to remember it later, and it's frustrating, embarrassing, and, hopefully, not going to be an issue much longer. I have so appreciated everyone's patience and kind words through this. Thank you, thank you.
Friday, December 26, 2014
"You Need to Sleep Deprive Yourself"
Trust me, these are not the words an already sleep deprived
person wants to hear (also, apologies… this is the most convoluted post I’ve
ever shared—and I’m too tired to make it more sensible).
For those of you that don’t know, I’ve been struggling with
severe insomnia for nearly six years.
I was never a great sleeper to begin with, but when I became pregnant
with Eli things went off the rails, never to return.
For awhile it was easy to justify: back-to-back pregnancies,
a Sophie that wouldn’t sleep, a body that was out of whack once Sophie did
finally begin to sleep. It wasn’t
until a year or so after Sophie started sleeping through the night that I truly
began to wonder if I would ever sleep normally again.
There were many stages during this deepening awareness that,
yes, I have a sleep disorder.
Frustration was the longest stage.
When you are so tired you can barely function and still cannot manage to
stay asleep for longer than three hours at a stretch, well, it’s hard not to go
bat-shit crazy.
These days, I am resigned to the whole thing. When I finally caved earlier this year
and asked my primary doctor for a prescribed sleep aid, it felt like total
defeat. I despise taking
medications and figured it would do little to help me in the long run.
Four different prescriptions later I am taking a medication
that does help the situation, a little.
After that initial visit, my primary care doctor was wise enough to
schedule, without asking me, an appointment with a sleep specialist. You know, cause there was a FOUR-MONTH
wait to get in to see him and she figured I might find some use in it. I shrugged, hoping the sleep meds would
help enough to get me back on track so I could cancel the appointment before it
rolled around. Not sure where this
optimism comes from...
Four months later, the sleep specialist told me that staying
on sleep aids forever wasn’t the best option, but I could do that if I wanted
to. Um, no. After ruling out sleep apnea and a host
of other sleep-related disorders, his next suggestion was to see a sleep
psychologist. I had no idea what
this would entail. His
explanation: It’s going to be hard, and things will get worse for awhile, but
nearly everyone has success going this route.
Vague, but what the hell… I’m in.
To give you an idea of the timeline here, I went to see my
primary care doctor in May, finally got the sleep aid I wanted (after having to
guinea pig three others) in July, saw the sleep specialist in October, and had
my first visit with the sleep psychologist at the beginning November.
Insurance snafus kept me from having my first follow-up
appointment with the current doc for nearly two months, until this past Monday.
It’s a good thing I’m not exhausted and desperate for
sleep. Oh, wait…
So finally, this highly anticipated appointment rolls
around.
It takes all of 10 minutes and goes something like this:
Doc: From your sleep logs, it looks like on your best nights
of sleep you get a little over six hours of sleep.
Me: That sounds about right.
Doc: But you’re often in bed for 9 or more hours.
Me: That sounds about right.
Doc: That’s a problem.
Me: …
Doc: When you’re in bed that long and not asleep, and doing
things like reading or drawing before you go to sleep, your body doesn’t
associate your bed with sleeping.
Me: Okay.
Doc: What time do you want to get up in the morning?
Me: Well, in a perfect world I’d never get out of bed before
8am.
Doc: No, you need to get up before your kids wake you
up. When would that be?
Me: Uh, I have two small kids. There is no set wake-up time. Right now it’s anywhere between 6:45 – 7:30, if I’m
lucky. Eli gets on jags where he
wakes up before 6.
Doc: So, 6:30?
Me: I don’t want to get up at 6:30.
Now she’s getting visibly annoyed with me. I shut it.
Doc: We need to figure out your wake-up time, so we can
figure out your bedtime.
Me: Okay. If I
wake up at 6:30?
Doc: Your bedtime would be 11:30.
Me: Oh… so 7:00 would make my bedtime-
Doc: Midnight.
I used to be a night owl. Not anymore.
Most nights I’m in bed by 10:30, 11 at the latest. I need to cash out in bed. To rest, if not sleep.
Me: Well, I guess I’ll take the 6:30 wake-up.
Doc: Right now you rarely sleep for more than 6 hours per
night. So you shouldn’t be in bed
much longer than that. You need to
sleep deprive yourself so your body knows that going to bed means sleep and
nothing else. You need to make yourself
so tired that your body will learn to sleep during that time because it’s the
only time it’s going to get.
DID THIS WOMAN JUST TELL ME TO MAKE MYSELF MORE TIRED? What kind of operation was this? Was there a hidden camera
somewhere? Were they trying to
make me go off my rocker? My
deer-in-the-headlights look and lack of response must have signaled consent on
my part, because she kept going.
Doc: It’s not going to be easy. You’re going to feel worse for awhile. But you’ve been sleep deprived for so
long that it shouldn’t affect the way you function too much. If it does, let me know. But you should be fine.
Me: …
And that was pretty much the appointment. I’ve waited seven months for someone to
spell out something that feels, quite honestly, very basic, although very
torture-like.
I came home equipped with more sleep logs, very specific
instructions on what I MAY NOT DO in my bed, and both a sense of relief and
dread. Whenever there’s a plan,
something else I can try, a new path, I feel relief because it means I haven’t
actually tried everything and there is hope that things might improve. However, this stay-up-late, don’t nap,
and get-up-early plan was daunting.
I’m so tired already. How
was less rest going to help me?
I can’t tell you yet whether it’s helping me or not. Now that my mind knows there is a
schedule and I only have limited time to sleep, my nights have once again
become quite restless. Since my
days start earlier and end later I feel like each day is its own marathon. Around 4:30 in the afternoon, when I
hit the worst slump of fatigue, all I can think is: Fuck! I still have to be awake for SEVEN MORE
HOURS. How am I supposed to do
that? But then I do.
And there’s this: Waking up before everyone in my house is
really quite wonderful. It would
be even better if I could sneak downstairs and actually start my day without
waking anyone (we live in an old, creaky-ass house, and although Eli could
sleep through an air-horn in his room in the evening, in the morning hours he
is the lightest little sleeper). I
have been instructed to get up IMMEDIATELY upon waking, so for now I’ve hauled
my meditation cushion up to our room, and I’ll sit and catch up on news
articles I wanted to read on my phone, dick around on Instagram, do yoga,
meditate, and sometimes just sit in the quiet and listen to my family sleep.
The doc was right that waking “on my own” (with an alarm, of
course) versus being woken up by a needy little one would give my day a
different start. When Eli and/or
Sophie stumble into our room I am ready and happy to greet them, instead of
waving them off back to bed, grumbling about how I need more sleep. If nothing else in this situation
changes for the better, I am thankful for that little slice of improvement.
Where will I be in a couple weeks? I have no idea, but I’ll keep you posted. Also, for those of you suffering from
insomnia I hope you find some useful advice in this post. Maybe you can get this figured out much
quicker than I have… waiting for medical advice you are desperate to receive
isn’t a great feeling, to put it kindly.
I wish all of you many restful nights of slumber, and hope I can join
you soon.
Labels:
insomnia,
sleep deprivation,
sleep-deprived
Wednesday, May 14, 2014
These Writing Snippets Aren't Cutting It
Hi.
I know, I know (I’m glad we got that out of the way).
So, I recently had the pleasure of spending a week in
Maine. Why Maine? Well, last fall I applied to a writing
residency I really, really wanted to get (lady writers, you’ll want to check
out the Hedgebrook Writer’s Residency here). While I waited to hear my fate I decided I needed a
consolation prize in case I didn’t get it. You see, friends,
I have barely written anything for myself in, oh, years. I was starting to get nervous that I
wasn’t a writer anymore. Hell, I
don’t call myself a Writer. I say
things like, “I do freelance writing and editing work.” This is true.
It didn’t take long to scheme up an alternate plan: I would invite myself to my friend
Irene’s house for a week. I hadn’t
seen Irene since graduate school (2008), I’d never been to Maine, and I
desperately needed some quiet time and space to write. She was, thankfully, all in.
It felt good not to pin all my writing hopes on the residency. Good thing.
So off I went, to Maine.
This all sounds easier than it was in reality. I’ve never been away from the kids for
more than three days, and even that began to feel long. I knew this would be different, though,
and it was. I arrived in Maine on
a Wednesday, and while I missed Vinny and the kids each day, it wasn’t until
Sunday that the pull really began to take hold.
But that’s not what I wanted to write about.
What I really wanted to tell you is that I’m still a
writer. I know, I wasn’t sure
about it either.
I want to gush.
I want to tell you how magical it was: the time and space
needed to allow your mind to unfold creatively, to rediscover a long-buried
love, to talk shop with someone who knows your writing intimately, to scheme
future publishing projects, to reacquaint yourself with long-abandoned projects
only to see new potential, to get outdoors and breathe in that ocean-scented
air, to take hikes, to linger.
To linger…
Yes, that’s it right there.
This is perhaps the part of having children that is most
confounding to me: the pull
between being present to properly care for little people, and having the time
and space to linger in your own thoughts without being tugged in fifty other
directions.
Lingering, for me, is crucial to creativity. If I can’t live in the writing, roll
around in it, talk about it, examine it from ninety different angles, well,
it’s tough to get to the heart of it.
A huge part of the problem is that because I write so
sporadically, when I do finally find a little window of time to sit down and do
the work, my brain freezes. What
do I do with this snippet of time?
Do I start something new?
Do I haul out that fucking screenplay again? Do I do some research for a book I haven’t started so I
don’t really have to write? Do I
organize my writing folders? Do I
make a list? Do I…? It’s overwhelming.
This nasty spiral often continues for the entirety of the
Writing Snippet. And then it’s
over, and I’ve usually accomplished nothing, and feel further dejected.
To have a week to bask in it all was the biggest gift I’ve
given myself in a long time. It
felt at once selfish and utterly necessary.
Re-entry back into regular life has been harsh. In the week I’ve been back, this is the
first real time I’ve had to think—and quickly type—any writing-related
reflections. It’s
discouraging. I told Vinny my time
in Maine felt like a tease. I
discovered that yes, it’s still there, only to have it pulled away again. So I’m left to chase it.
The difference is, I’m motivated to chase after it now.
What does my ideal writing practice look like? It looks like time carved out each day
to write. I kissed this ideal
good-bye a long time ago. At this
point in my life it isn’t realistic.
And I’ve come to accept that.
Here’s the thing:
I don’t wish time away.
Sure, I sometimes think about when the kids will both be in school, and
hey, won’t it be nice to have part of a day at home to work on my writing? Hell yes. But then this daydream is quickly followed by the sobering
fact that Eli will turn five this coming Halloween, and I begin to wonder how
this is possible, the way time begins to move at lightning speed the moment
those babes arrive. Soon enough I
will be alone far too often without them, and that will be difficult in
different ways.
I left Maine with a list of short and long-term writing
goals (thank you, Irene). Three of
my short-term goals will remain on a permanent list:
1. FINISH a
piece of writing.
(seriously, this is more difficult than it sounds)
2. Submit
it.
3. STOP
distracting myself with BS tasks to avoid writing.
My current plan is to carve out a 2-3 hour block of time
once per week to work on my own writing.
I can make that time for myself.
I deserve that time. I need
that time.
We all do, mothers or not. So do it.
Linger.
Thursday, January 2, 2014
What Do YOU Need Today?
Hi. Yes, I'm still here.
I fell off the blogging wagon
(again) for, well, a long time. The last few months have seen a lot of
changes on the home front (a total kitchen demo, a new job, little one back to
school, the other in speech therapy - you know, life). In the midst of
trying to juggle a new-to-me schedule, job and an in-home construction zone, I floundered when it
came time to care for myself.
This is nothing new, of course.
Even before I had kids, I was an expert when it came to putting the needs
of others before my own. Most of us are experts in this realm; sadly, it
becomes second nature to neglect ourselves.
Well, after years of doing this,
my body let me know about it. Hello, adrenal fatigue. You suck.
I've spent the last year + trying
to integrate self-care into my daily life as I slowly recover from adrenal
fatigue. In theory this concept strikes me as basic enough, but when you
start to delve into self-care, the things you “should” be doing to take optimal
care of yourself—and let's face it: depending on what you read or care to
believe in, this could be just about anything—well, it can become another
stressor in your life. Am I eating well enough? Oh shit, I
shouldn't have eaten that fourth crab rangoon before I mowed down that entree. Am I exercising
enough? Does running up and down
the stairs ten times a day chasing the kids count? It should. Am I getting enough sleep? We all know answer to that.
A couple weeks back I came across
this article: “Is Your Self-Care Regime Turning Into a Stressful Job? 3 Ways to Practice Optimal Self-Care”
Oh, boy. Did this one resonate. Mostly, this:
Ask yourself first and foremost, "What do I need today?" This is a simple yet oh-so-powerful question, because it
acknowledges that you -- your mind and your body -- are the expert and know
what's best. We all too often trust other people's advice more than we trust
ourselves, when in reality each day is different. Some days you might need
grounding energy. Other days you might need airy, light energy. Give yourself
the freedom to adjust your self-care regime to meet you where you are.
Especially for us women, it's important to be in tune with our monthly cycles
and acknowledge that our body has different needs throughout the month.
* * *
* *
I've already put this valuable suggestion into action.
A few weeks ago Vinny was heading to his folks to deliver some prints and
take winter photos. My mind saw an opportunity to be husband and kid-free
for a long weekend… for the first time ever. Ever. We went back and
forth on him taking the kids, but that question, "What do I need?"
kept creeping in. What I needed was a break. Some quiet.
So I asked for it. And it happened. It wasn’t the weekend I had hoped
for. One ice storm, leaky bathroom
ceiling, and tumble down our back steps later, I was a bruised and sore
mess. Still, it was a break, one I
mostly spent in pain on the couch watching terrible films. I relished every minute.
Listening to what your body is trying to tell you isn’t as
simple as it sounds, at least not at first. During this process, I have also discovered another
by-product of asking myself "What do I need?" It means asking
for help more than I normally would - which is almost never. I am
terrible at this, still. I like to believe I can shoulder it all on my
own because that's the way I've always been. I'm stubborn and
independent, a good combo in some situations, but certainly not all.
I don't do resolutions anymore, for lots of reasons.
The last few years I've shifted my focus to setting an intention or a
creative goal instead of placing a limitation or unrealistic expectation on
myself. This year, I will continue to ask myself, "What do I need
today?" The simple act of asking has been transformative, and I hope
it becomes a deep-rooted habit over time.
What about you?
What do YOU need today?
Give yourself some time and space to figure it out.
Labels:
adrenal fatigue,
parenting stress,
self-care,
stress
Wednesday, July 31, 2013
I Suck at Structured Play
That’s the short of it.
Sophie had her two-year well visit back in April. She has been what is considered slow to
talk and/or acquire language. I
haven’t felt alarmed about it, though as a parent, I would love to hear her little
voice putting more words together.
Thankfully, we have a very laid back pediatrician. She suggested that if Sophie wasn’t
progressing or making a significant effort within the next two months then we
might contact Early On, just to have her evaluated.
This seemed reasonable, and is exactly what we did. In late June, two women came to our
house to evaluate Sophie. When it
comes to her receptive language skills, she tested out of the book (the book
stops at a five-year level… at that point it is assumed the child is ready to
begin school). I know Sophie is
intelligent and observant, but watching her follow through with complex tasks
and questions blew my mind. Her
young brain has been very busy taking it
all in.
When it comes to her expressive language skills, however,
she tested “just under” what is considered normal (although later it was talked
about how she is nearly a year behind on her language development, so who knows
exactly where she falls, although it is most certainly not in the “normal”
range).
As a parent, I have struggled with labels and how they are
so quickly thrown onto children at every turn. I realize these labels are meant to have a constructive
element: they allow children to qualify for certain services, give parents some
relief in knowing what their child may be struggling with, etc. With a label like speech delayed,
however, it’s hard not to feel like I’ve somehow not done things the right way,
or played with her enough, or, or, or…
Beating myself up is useless and counterproductive, I know.
Then there’s the part of me that wants to justify how
awesome she is. “Look! Look at the puzzles she can do! Look at her hand-eye coordination
working with tools, screws, latches, etc.!” Eli can’t do most of the puzzles that Sophie sits down and
does easily. He struggles with
fine motor tasks that she breezes through. Clearly, they’ve developed particular motor skills at vastly
different rates. But because Eli never
stops talking it’s as if he gets a pass on
the other motor skills. And
because Sophie’s “delay” is something that is quickly noticed as being absent,
well, she doesn’t fly through.
On the day of the evaluation, a plan of action was laid out
for us. The women that came to
visit us were so kind, and clearly understood how hard it can be to hear that
your child is delayed. They didn’t
pressure us to accept their help or services and assured us we could take all
the time we needed to decide how we wanted to proceed.
We didn’t need time to think about it. Of course we are accepting their offer
of help. Why? Well, why not? What made me agreeable to this
intervention and offer is that it is all based in fun. We will not be drilling Sophie, or
otherwise overloading her with language in the hopes that she’ll just get it
one day.
Instead, we have a speech pathologist that comes to our home
and plays with Sophie, modeling techniques that we can then use with her. It’s only been two weeks, and I can
already see improvement in Sophie’s attempts to say words.
This doesn’t mean it’s easy. There are very specific ways to play with her, techniques to
use, music to listen to (more on that in a moment). I’ve had flashbacks to the days of physical therapy with Eli
for his torticollis. He was three
months old when he began PT, and there was a rigorous schedule of stretches I
had to do with him each day. It
was miserable. I spent most of his
waking time stretching him, and making him do tummy time. When I didn’t do the stretches as
prescribed, the therapist would berate me and make me feel like a terrible
mom. Needless to say, I switched
to a different PT office, where things improved. Still, it was hard to spend my free time with Eli doing
things he so very clearly hated. I
just wanted to hang out with and enjoy my baby. Instead, I had to reverse the months of muscle tightness
that had built up in his neck because he was jammed in my belly with his head
cocked sideways (asynclitic is the technical term).
When I look back, the PT seems easier. I didn’t have to fake anything, I just
had to do it. With Sophie, the
play is very specific, and there are certain techniques we need to implement
(silence, listening, waiting for a response, trying to get her to use eye
contact with us a lot more). Then there’s the music. On our first home visit, the pathologist
handed over a CD of kid songs that are meant to encourage participation,
repetition, and speech development.
She handed the disc over with a warning: “These songs are going to drive
you crazy.” I knew this before she
opened her mouth.
I’m just not that mom.
The one that plays kid-centric music, cheerful sing-alongs, etc. We love music in our house and listen
to it all the time. Just not
necessarily “kid music.” We’re
just over one week of listening to this devil music on a daily basis. The kids have slowly gotten into it and
I, of course, have the most annoying song on the disc stuck in my head every
night at bedtime. I want to choke
the guy that sings the Puppy Song (I refuse to look at the playlist and learn
the actual title of the song). It
is, naturally, Sophie’s favorite song.
So it’s slow progress.
My initial resistance to playing “a certain way” has begun to wear off
(though it is hard for me when things are less spontaneous, when I feel like
there is a purpose to play other than play itself), I’m dealing with the music
(okay, and even like two of the thirteen songs on the disc now), and most
importantly, feeling less caught up in the labels and tests and feelings of
inadequacy and more focused on what matters: Sophie.
Thursday, May 23, 2013
Finding My Way Back
I’m here.
I realize I haven’t posted in several months. Every few weeks I start a post and then it falls to the wayside. I’ve had every intention of “staying on it.” But for awhile there staying on it = additional stress and fatigue. Guess what? It’s not worth it.
I realize I haven’t posted in several months. Every few weeks I start a post and then it falls to the wayside. I’ve had every intention of “staying on it.” But for awhile there staying on it = additional stress and fatigue. Guess what? It’s not worth it.
A childhood best friend passed away at the end of
February. It wasn’t a complete
shock, meaning I had known about her diagnosis/prognosis for several
months. As much as one might think
you can prepare yourself for such a moment, well, you can’t. Her passing knocked me down, hard, and on so many levels. She has two young babes around the same
age as mine and for days I couldn’t even look at my own children without
crying. I felt pain for so many
reasons and so many different people.
I thought about her laugh and the fact that none of us would ever get to
hear it again (seriously, no one has a laugh like Janice, and I mean that in
the best possible way). There were
so many reasons to be sad.
I’ve experienced grief before, but in a kind of
way where I didn’t fully allow myself to be completely immersed in it. I would dip a toe and then quickly pull
back. It’s not a difficult thing
to run from. It’s hard to embrace.
This time I didn’t even have a choice. It held me down and kept me in its grip
and there was nothing I could do to tear myself away. I’m thankful, now, that this was the case, even though in the moment it was huge and overwhelming and oh-so-exhausting (did I mention Vinny was working in L.A. while all this went down? A true test of grit if there ever was one).
Since Janice passed, there have been so many things to write
about. So. Many. Things. Writing
is always my go-to escape, my way of making sense of my world. And by extension, sharing my ramblings
helps to keep things real, grounded.
So after several weeks I began to feel guilty and depressed that I wasn’t
writing, keeping up with the blog, just generally pouring my
thoughts/experiences/feelings out onto the page. Even if it was just for my own eyes to read later.
I tried to push myself to write, dammit! You know how to do this. You must do this. It’s what you do.
But there were no words. Only tears.
Only sadness. Only that
empty feeling you have when someone is missing and you forgot what a big part
of your life they were until they are gone.
And so I sat with all that. I meditated. I
cried. I stretched. I cried. I doodled. I
cried. Then I cried some
more. I stopped thinking about
whatever it was I was supposed to be doing. If I never wrote another blog post again, fine. If I never explained
what happened to me the last few months, fine.
Mostly, I’m not doing either of those things right now, even
though it kinda looks like I am.
My experience of grief, what it felt like and continues to mean to me, is
still too close to share in intimate detail. My body is still so raw, though now I can walk past a
blooming plant and smile with pleasure instead of dissolving into tears, or listen
to some of my favorite (albeit sad) songs without immediately turning into a
snotty mess.
It doesn’t mean the grief is gone. It’s merely giving me breaks now… escaping my body in more
measured (and manageable) bits. I
still have moments that overtake me so sharply I can barely breathe, as though
I need a reminder that yes, she is still gone, lest I forget. Like I could.
So I am slowly finding my way back. In fact, I have been more slowly
everything lately. Savoring
moments with the kids, especially the tedious ones, the ones we tend to
overlook because taking care of kids can so often feel like a monotonous
routine. I have never been more
grateful to participate in a monotonous child-care routine. More grateful to be healthy and mobile
and aware and able to live my life.
More grateful to be awake.
To everything.
Labels:
grief,
losing a loved one,
meditation,
parenting through grief
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