The neutrality of peace and the certainty of chaos

If anyone is still out there, you’ve noticed I no longer write here. It’s not that life is not still wonderful and confusing, but that I’ve accepted the wonder and confusion for what it is, and it’s softened my desire to publicly ponder. Quiet reverie.

I feel more comfortable now, in this unique-ish mothering role – a little less bewildered and clueless, and a little more in-the-know and fortified. And with that, ready to move on to more bewildering things that I am clueless about.

I’ve started a new business that has been slow (so slow) to ramp up, with little (so little) time. It is named after A and called Arch Inclusive. The services I offer are the services I currently know how to do, and it’s nothing too exciting really, but still exciting. I have been working in this field (digital accessibility!) for 12 years now but have dreams to get more real about it all. You know, make a difference.

I won’t share any specifics that illustrate the enormity of my vision, but generally, I hope to grow a business that not only supports, but demonstrates, the significance of an inclusive community.

A brief update on our guy’s epilepsy, while I’m here: success with cannabis, then rocking the boat with weaning the keto diet. We’re currently back to square one seizure-wise, but with previous successes in July (5 seizure free days in a row!), we are optimistic about finding our footing once again. Slowly, surely, as with everything.

Row, row, row your boat

All is sunny in 2015. Steady she goes (sorta), stay the course (mostly), onwards and upwards (definitely).

A’s doing well – bright-eyed and bouncing. Still multiple daily seizures – some weeks are worse than others, but generally it’s been alright. It still really sucks, but it’s alright.

Myself – I’ve been tense, but in a good way, like the way you feel right before jumping into a lake. A starts junior kindergarten soon and with that a whole shift in our little universe. Though really, “soon” is looking more like a year from now, so that is not actually soon. But arranging supports and support staff for Mr. A takes time, months, so we start the ball rolling now.

Lots of thoughts lately. Mostly judging the line between pushing harder, expecting more and letting be, enjoying what there is. Both are important. Both are necessary.

Lately, I spend a lot of time thinking about how to achieve more time. Lately, I spend a lot of time not in the moment, which reminds me to someday practice being in the moment. Lately, I feel so fulfilled at how interesting and never-endingly-endless my days have become.

Gentlemen

A was recently weaned off a heavy med and is so much happier as a result. Smiling. Laughing! Things we haven’t seen since A started down this path, taking anticonvulsants, well over a year ago. Over a year ago.

It’s hard to explain the weight of this return. To not see your child laugh for that long, and then to suddenly witness him enjoy spontaneous, genuine hilarity. It happened on the weekend and we don’t even know what was so funny. It just kept bubbling up and out of him, over and over. Moments likes this give perspective… of course there are benefits to meds, but there are real sacrifices involved too. And as parents, we must continuously weigh these two things.

Our long shot hopes are that with clonazepam out of the way, the ketogenic diet might work better, as I’ve read less med interference can improve its effect. The medical world seems to move so quickly tho, expecting change suddenly, and making changes immediately if seizure control isn’t achieved. The Dr. would like us to increase a new drug that A’s on, currently at a low dose. But we have learned to not react so suddenly, to give it time. The process should be more gentle. Always, let’s be gentle. There are nuances, subtleties, and so many endless unknowns within the epileptic condition, that it’s so easy to lose sight of things when moving quickly, especially the little changes which can be so telling. Or the big changes, like laughter, that can shake you out of typical compliance.

So much learning has happened over this past year, a pretty rough year. So much good, grounding, calming knowledge has come to me, in different ways – through reading the experiences of others, through educating myself about A’s genetics, through living A’s ups and downs, through practicing compassion, patience, mindfulness, and through our family’s unwavering love for and joy in each other.

I feel an inner shift becoming more definable, as it continues to gain focus. I hope writing here will become more a part of that process.

By the way, the audio podcast thing is still in the works. I created an episode (or two, or four) but it didn’t feel quite right. Sorry for the false start. It might end up something I just put out there, and experience its growing pains publicly… less trying, more doing.

Calm, happy, safe, competent

This incredible post has so much, so much, so much. But the words that I have copied and pasted into my daily notes are: “calm, happy, safe, competent”. Beautiful advice to any parent on how to nurture a child, and I think I already infuse these elements of goodness into my children, but having some words to focus on can be a useful guide.

It echos an article I read recently about intractable epilepsy, outlining a paper that researched the factors that affect an epileptic child’s quality of life. Some of the factors they examined were things like types of seizures, duration, other disabilities, etc. but, in conclusion, they underline that those with strong familial and peer support had more favourable outcomes. The seizures themselves were of less importance:

Analysis of these data found that peer support, parental support, and mental health had the greatest effect on QoL, with seizure status exerting “a weak, indirect effect on QoL only through the child’s mental health.”

Um, isn’t that sort of amazing? Or is it obvious? I can’t tell. But it is at the very least, an extremely important aspect of this life, this life in raising a special needs kid.

Epilepsy and neurodiversity (can get along)

Coming off the heels of a post about numerous seizures, it might be a good time to delve into the whole “this is a gift!” vs. “this is a terrible sickness” discussion that seem to plague many a special needs community…

AHHHHH.

We just cannot think of people, inherently complex beings, in polarizing terms. Neurological differences can sometimes come hand-in-hand with neurological disorders like epilepsy but the latter cannot be used to define the former as pathological.

If someone has depression, we would not consider his/her entire being as diseased, but recognize that they are suffering somehow, and work to help ease that problem. Perhaps this is a shoddy comparison, but you get my drift, right? In fact, having gone through depression myself in the past, it’s often something I look back on lovingly as a very hard time that gave me immense, grounding knowledge.

Brains are infinitely complicated computers that can sometimes run into wiring issues – it happens to every one of us. Negative thoughts, obsessive thoughts, headaches, vision issues, fatigue, you name it… some obviously more serious than others, but all possible symptoms that can happen as a result of just having a brain. With stigmas, our culture has come to categorize some symptoms as more meaningful than others. The more chronic or holistically-affecting, the more it leaches into defining the person by that issue… and sometimes influencing whether we choose to pass that person over, or invest our time, love, commitment, etc.

If you’ve read other posts of mine, I can sometimes get very reverie-y about the fact that A is an incredibly interesting kid because he is neurologically different. I really do believe in and celebrate neurodiversity, all of the time. To me, being interesting is superior over being typical. I don’t mean neurotypical, just typical… fitting in, being predictable, operating on automatic, etc. But I try to keep myself in check with the whole “he has superpowers!” or “he’s totally the best BECAUSE he has disabilities” because… sigh. His epilepsy is an endless fucking bummer, and I’m sure he’d likely cash in his motor planning issues for the ability to walk and talk in a second. Let’s stay real.

But here’s the thing, I think: innovation comes from adaptation, peace comes from letting go, acceptance, and appreciating the good things when they come, wisdom is born out of struggle. And A is in a position to experience all of these things, always. It’s all he’s known. So it’s inevitable that in time, he really will become an exceptional human being. Not because of his disabilities, not because of his superpowers, not because he is sick, not because he is neurodiverse, but because he is simply human.

If that seems muddled, it’s because it is.

Quick seizure update

In the interest of fellow parents following along with the seizure part of things, here’s today’s email update to the neuro nurse. It’s my first time in awhile sitting down with the numbers and a calendar to add up weekly totals. I always meticulously document each day, but clearly need to do this big-picture analysis more often. I’m guessing the reply might be to go back up on clonazepam and see if the tonics go back down. Sigh.

I should also mention we’ve all been sick this week so that could help explain the jump in numbers in the last while.

Lots of tonics lately. Here are my records so far.

M=myoclonic cluster (some ~2 jerks, some ~15), T=tonic, D=drop. I left out the screaming ones but he has roughly 15 of those each week.

aug:
week 1: 29M, 2T (tonics new)
week 2: 35M, 2T
week 3: 22M, 4T, (clonaz decrease)
week 4: 11M, 4T (clonaz decrease)

sept:
week 1: 7M, 8T
week 2: 14M, 2T (clonaz decrease)
week 3: 15M, 9T (clonaz decrease)
week 4: 10M, 17T (clonaz decrease)

oct:
week 1: 6M, 23T
week 2: 9M, 21T, 3D (drops new)
week 3: 14M, 41T, 1D (clonaz decrease + clobozam started)

He’s now at 1mg AM/0.75mg PM for clonaz and 5mg PM for clob.

Audio-casting…?…!

As a new dimension to the prism of life that is life with A on the interwebs, and because I use to be a musician, and because I’ve recently become obsessed with podcasts, and for other reasons… some known, some unknown, I will soon be offering the content of this blog in audio-form, as well as written.

To start, they will simply be narrated blog posts, but I expect they will become peppered with family sounds, life sounds, maybe some music from hubs and I… maybe none of these things and instead just quiet tea-sipping in the late, reflection-y nighttime.

If this sounds interesting to you, I just added a little form over on the sidebar —> where you can enter your email address and add yourself to a mailing list of sorts, which I may or may not use, but seems like a good thing to start up, as I stretch myself out into the spaces that exist.

Celebrations are visual, aural, emotional. Life is so sensory… we do what we can on the internet to warm one another, feel each other’s stories, send out light, and grow the love.

 

 

Thankful

“What are you thankful for honey?”
With a full mouth, hubs replies, “chorizo sausage, you?”
I smile the smile of a wife going on many years with many more to come.
“Oh, everything.”

We have received a lovely life, know this, and are thankful for it… cured meats and all.

A has never seemed a burden to us, in any way. He is our child and although he comes with a unique list of needs, so does our other child, and every child. There is no need to pity us, and I’m sure those we know do not, because they know us and feel our happiness, but there are others that seem to, by default, when they learn we are parents to a special needs kiddo.

We had a meeting yesterday with yet another Dr. (after an over year-long wait list) who seemed to, in an effort toward understanding, project a sense of profound sadness, that as a result of A’s obstacles, we might be very sad. “At some point, you will likely want to see a grief counsellor.” We are sad, about some things. We are sad about seizures, mostly, the medication, and generally anything that might bum A out. But seizures take up literally just minutes of all the minutes in a day and I would say that in a pie-chart of A-ness, our feelings of sadness would be a relatively small slice.

!!!

I want this blog to convey a sense of celebration. I need to spruce up the blog theme to include balloons, fireworks, sunshine… Hubs and I often say to each other, “A is such a neat guy, eh?” or “Pretty cool we get to have a kid like A”, etc. Seriously, we feel this, we really do. A good life is an interesting life.

It doesn’t mean I don’t have fatigued, weary phone calls with my mom about how there’s so much to understand, learn, deal with. It doesn’t mean I am the epitome of health, happiness, and well-being. It doesn’t mean I’m balanced, well-rested, or even always coherent. It means that the love I have for A is a light that shines within me, and all is right and bright in the world as a result.

 

In the wind

I think as this journey continues, as I settle into the rhythm of mothering a special kid like A, the importance of documenting our life, of puzzling through each moment, of anticipating every avenue of possibility… feels less. Not that I don’t want to document, puzzle, anticipate. Not that I don’t still do these things, in my own way, less publicly, but the importance… is less.

These days, all of my energy seems to go toward making sure we’re all clean, fed, clothed. Making sure the car has gas, the bills are paid, the dog hasn’t been forgotten about. Making sure I am prepared and focused for work days, CHEO days, therapy days, etc.

And in between, so much dreaming. Wonder. Reverie. So much that is not this. I guess with both kids in daycare, with time passing, there’s space to think about other things. Like making elusive, messy plans around reckless business ideas, bizarre vacation destinations, ridiculous creative projects, even maybe… taking up golf?

Then something small happens. An 8yr old neighbour meets A one day and asks me, “do you babysit this kid?” and I just have to stop and seriously wonder what the heck this life is all about and how it’s all connected and where do we get all of our ideas about inclusion, disability, life… But in the next breath he encourages, “when he gets older he’ll be able to push the wheels!” (of his walker) and I am steadied. We juggle ideas in front of A, about A. No he’s not tired, he’s feeling the wind. Do you know what epilepsy is? That was a seizure – he’s okay. What’s he doing? He’s jumping because he’s excited.

And I wonder what A thinks of all of this, or if he’s even paying attention. I want to write this down so I can maybe ask him someday, about these puzzling moments, about what possibilities for interaction lie ahead. And maybe years from now he’ll tell me, or not. Either way, here we are, two happy dreamers.

Thoughts

I miss writing here more often. There are so many thoughts to work through.

Thoughts about spending 7hrs in front of a computer and the health of my back, which we all depend on.

Thoughts looking over the programming that highlights skills being worked on with my almost 3yr old: smile reciprocally, respond to name, gesture ‘bye-bye’, make eye-contact, etc.

Thoughts about presuming competence and neurodiversity.

Thoughts about homeschooling.

Thoughts while I guide A in his walker out of daycare, smiling and nodding at the other parents who’s children bounce along, finally pushing him slowly to the car while he lets his feet drag, doling out perky cheers like “use those feet mr!” while he gazes off.

Thoughts as my 115lb-self wrangles a strong, arching 33lb boy, then yanks apart and loads a heavy walker, and pulls out of handicap parking spot, feeling simultaneously defiant, exhausted, ridiculous, strong, special.

Thoughts as I rest my head on A’s back and quietly cry following a longer, shakier seizure, resisting the weight of defeat.

Thoughts about our stance on more medication, the ketogenic diet, marijuana oil, other therapies…

Thoughts on celebrating the incredible, clearly brilliant, little man that E is and finding more time for him and his intellectual development/curiosity.

Thoughts on how to do better, how to delegate more, how to connect, how to help, how to get help, and through all of this, remain happy, healthy, satisfied, and well.

Thoughts on lack of sleep, hobbies, exercise…