Recently, life hasn't been easy. It’s made me so thankful.
(That is not as disjointed as it may seem.)
I wish that I was generally grateful by default, but I’m
not . . . which, I think, is pretty common. Maybe the resting state of not-perpetually-grateful is necessary for function, akin to the way that nerve endings become desensitized to a
stimuli. In case you're not a science nerd, here's an example: when you put on a new sweater you may think Wow! This sweater is so soft! A few minutes
later, the softness of your sweater is a thought of the past, and this is a
necessary reduction. If you were
constantly appreciative of your sweater’s softness, you wouldn't be able to
finish a thought . . . “Ok team, in our meeting today---wow! Guys, my sweater is unbelievably soft!” Similarly, if you were perpetually thankful, your gratitude would be
literally overwhelming . . . marveling at the wiring in your home that makes
electricity possible, the drinkable water that comes out of your faucet, the strength
and functionality of your non-broken legs, the fact that none of your fingers
currently has a paper cut, etc.
In this way, I've come to believe that the times that I am
most thankful, most appreciative, are the times when I am existing in the neighborhood of a crisis . . . not really in a crisis, but close enough that I can see
it, smell it, feel it in the hairs on the back of my neck. To use a mild example, it’s like when you are feverish and sick and can’t breathe through
your nose and then suddenly you realize that your advil wore off a while ago ,
but your fever isn't back yet . . .and did you just manage to take a breath
with your mouth closed? That’s a moment
in which you are thankful for the possible return of the health that, three short
days ago, wasn't a blip on your gratitude radar. It’s like having that soft
sweater pulled off, and you’re chilled and exposed, but only for a few seconds
before you get it back and put it on and re-savor the softness and warmth, which seems even better than you remember.
Recently, life hasn't been easy. It’s made me so thankful.
My five year old daughter can’t speak, but can communicate a
great deal of her thoughts with her communication device. She often, however,
shuns the device around new people and places, and she started kindergarten (in
a new school) this fall. Sure enough, on many days I've heard that she was
disinterested in using it in the classroom----but her teachers are annoyed by
this (as opposed to indifferent). They know that she is capable and are quietly
frustrated that she won’t demonstrate her abilities, and won’t communicate with
them. I am thankful for their frustration, as it speaks to their investment in
her, and their belief that she-can-do-more.
*
Maya meets with a reading specialist once a week. She brings
home a folder of homework, new word families each week. We sit together to work
on the worksheets, and while her focus is hit-or-miss, her knowledge surprises
me every time. She will be a reader. She will be able to spell, to write. For a
child who can’t speak, the ability to spell and type is invaluable . . . and I
can see that she is on her way. I am thankful.
*
“Laundry mountain,” as I unaffectionately call the monstrous
pile of clean-but-not-folded-or-put-away laundry on our couch, has grown to a
size that leaves it often oozing off the couch. The kids help by running over,
holding up pieces, and declaring their rightful owner (that’s Maya, holding up
a sock and yelling “Will!”) . . . or by grabbing armfuls of clothes and
toddling across the floor, leaving a trail as pieces drip from his grip (that’s
Will). I re-gather and re-build the mountain, pulling out pieces as we need
them. I’m thankful that at least most of
our stuff is clean, and that dragging laundry around the living room has kept
everyone distracted for long enough for me to slip away to the kitchen and get another cup of coffee.
*
Will has been growing, progressing, meeting milestones, and
just being a “typical” one year old. It doesn't escape me, this typical-ness. I
watch him toddle across the floor and find it amazing that anyone so small can
walk upright. I see him use his tiny fingertips to pry open containers that I
thought would keep him out, and I am blown away by how he enjoys the fine motor
work that didn't (and still doesn't) come easily for his sister. I hear him,
already, mimicking the words that I say to him, and using his voice to demand “more!”
(or, more accurately, “MORE! MORE! MORE!”)
and I am thankful, for the challenges that he won’t have to face, for the way
that his road has been paved and smoothed for easier traveling.
*
Maya has seen 3 new specialists this fall. Each appointment
raises the anxiety of meeting someone new, a doctor who may or may not listen
patiently as I try to summarize my child’s mile-long medical history in
three-minutes-or-less. Each appointment forces me to square my shoulders and
act strong enough to face new fears, as I lay down some
piece-of-information-that-has-scared-me-enough-to-make-it-necessary-to-brave-a-new-doctor. Each appointment is accompanied by various
medical tests, with varying degrees of invasiveness, and so each has raised
that am-I-doing-the-right-thing-guilt, the guilt that all parents face but somehow
special needs parents seem to face more frequently, and with more on the line.
But, so far, none of the issues that we've faced are life threatening, and I am
thankful, so thankful.
*
The adrenaline crash after each new appointment leaves me in
a tired-to-the-core, dazed-and-disoriented type of way. I am thankful for the
days that Will naps and I get to doze, or for the espresso-and-sugar
concoctions that warm my hands and wake me up (in theory, anyway) on the no-nap days.
*
Maya had a seizure today, a first, unexpected, with no
warning signs or cause or hint that anything was coming. For 10 seconds, I was
all-response-and-no-thinking. For 40 minutes of recovery, I held her and spoke
calmly to her and didn't let her know that that everything had changed, that
the ground beneath our feet no longer felt solid and strong, and that my seemingly
irrational fears of the potentially-serious-health-complications-that-could-come-with-being-undiagnosed
were now legitimate. I held her and I thought that I could have lost her just
then. And for the rest of the day, I was thankful in a way that no
parent-who-hasn't-thought-that-they-might-lose-their-child-before-their-very-eyes
can possibly understand.
*
It’s been 2 days since my daughter’s seizure, and yesterday
I found myself constantly watching her, searching for reassurance that everything
is fine, that she is safe, that she is alert, that she is with me. This morning my heart sped up when I saw her
step unsteadily and stumble and tense, but she caught herself and kept walking
and I saw that it was her “typical” unsteady gait and not a spasm or
seizure. I am thankful.
*
It’s been 4 days since Maya’s seizure and this morning I
didn't think about it, or picture it, or have a little re-living it flashback
for several consecutive hours . . . and I realize that time has started to work
its magic (its healing-magic or its you’re-too-old-and-stressed-to-remember-everything
magic , whichever one, they both work the same) . . . and I am thankful.
*
We spent four hours commuting today, because we still don’t
have a bus. We hit a long stretch of heavy traffic, but when I said “Oh, look
at this traffic!” Maya piped up from the backseat “Oh no!” and we laughed, and
then Will laughed because we were laughing. We made it on time and no one cried.
In the afternoon, on the way home, we
saw some Christmas decorations in a store window and Maya shrieked excitedly,
and I was grateful that today there was no bus, and that I got to share the time with her, to hear
her first exclamation of holiday delight.
*
Tomorrow we return to the scariest of specialists, the neurologist,
whom we haven’t had cause to visit in 3 years, 364 days. When I made the
appointment it seemed the perfect distance away: four weeks. Far enough away to
let it fall to the back burner of my mind, but close enough that I wouldn't
worry that we were waiting too long to be seen. I have been thankful for every
day pre-appointment, for every day that I didn't have to agonize over potential
future tests, that I didn't have to know what the doctor thinks about her seizure,
that I can try to pretend this was something small that we can just ignore. I
loved every one of these days. I’m also thankful
that whatever the news is, we have an amazing doctor, one who is
smart and worth trusting. (And because I’m the type of girl who needs to have a
back-up plan, I’m also thankful that we live in a big city full of smart second
opinions, if need be.)
*
Having a child with an unknown medical
situation means that life is lived in equal parts
don’t-overreact-things-are-probably-fine and
holy-crap-things-might-be-the-complete-opposite-of-fine. I am thankful for the
other parents who share their stories, who remind us to celebrate the good stuff.
I'm doubly grateful for those whose stories remind me to shut-up-and-be-thankful-for-every-freaking-second-because-it’s-easy-to-forget-that-the-seconds-are-numbered**.
Earlier this year my friend Kate suddenly lost her son Gavin, a little boy who was the same age as Maya, also nonverbal, also full of spunk and life and love,
and it spun my whole world around---I am so thankful for that (thankful for the reality check, obviously, not in any way thankful for the loss of Gavin). Because having a
child like Maya can be a lot of hard work, a lot of heavy lifting (literally
and metaphorically), and it could be easy to think “it’s not fair that things are
so hard for us” instead of “we have no idea what tomorrow brings, so I will
just be happy that today things are (our) normal, normal enough to feel
exhausted by and tempted to complain about.”
**As an important note, Kate is far too encouraging and lovely to think that anyone should “shut up and be thankful” . . . I am not that encouraging and lovely, and I tell myself to shut up and be thankful all the time J That sentence (and sentiment) belongs to me, not her.
Recently, life hasn't been easy. It’s made me so thankful.
Happy (early) Thanksgiving. For those who are in the crisis zone, may this pass quickly. If you're in the neighborhood of a crisis, may your travels lead you in the other direction, without having to get an inch closer to the bad stuff. And if you're lucky enough to be in crisis free territory right now, soak it up. Don't lose sight of how soft your sweater is.
9 comments:
Standing on my feet cheering. (for the post, not the scary stress of seizures) Love this as I loved your I'm more thankful than you are post.
So important whatever phase of life we're in to take stock.
Happy Thanksgiving.
Heather
So very beautifully written. Thank you for this. And thank you for helping me to remember the "Thanks" in Thanksgiving is a whole lot more than a prayer at dinner at grandmas house! Love your writing
Just beautifully written, from your heart to ours. Happy thanksgiving.
These are all great reasons to be thankful, and I agree with you about the perpetual state of being thankful nto being that useful. I'm sorey Maya had a seizure. Hope she didn't have any more. (Here via Love That Max.)
Lovely post. My son is undiagnosed too and I recognise so clearly the see-saw of don't panic/yes do panic! Sorry to hear about the seizure. We have those in our lives now too and it brings everything into sharp focus x
https://www.youtube.com/watch?v=n9wIjc8gfDc This video reminded me of you and Maya!
I hope Maya is ok :(
I am the mother of a child with cerebral palsy. I have created a new blog as a place to share some of my thoughts and feelings about life, love and the unexpected journey that is raising a child with special needs. Each month I will feature a child with special needs and share their amazing story. Please read, share and follow. You might find yourself inspired by the incredible lives of some truly remarkable children.
http://throughthetulips.blogspot.ca/
Thanks for posting such an amazing article. At this time medical science has made life more easier by solving a lot of medical issues that were thought to be incurable. You can do your heart or kidney transplantations from kidney and pancreas transplant if you have a serious issue.
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