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.

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…

A busy life

Life. It’s a beautiful, trying, evasive, immediate thing.

We’re heading into an adjustment for all as I return to work from my mat leave next week. E has started attending a nearby home daycare and is totally settling right in. A relief. And A will be going up to 4d/wk at his daycare and also moving into a preschool room. The leaves are changing colour.

The wood is piled, the nights are cooling, the wind smells like apples. Every meal somehow incorporates tomatoes and/or zucchini.

Every hour seems dedicated to streamlining. How to smooth down each task, like rocks in a river, so that they eat up as little valuable time as possible, run smoothly and efficiently, feel satisfying instead of draining. In itself, an endless fight against entropy, lack of sleep, the propensity of small children to create endless messes.

To fit in things like visits with friends, strolls along the river, baking seems not yet attainable, but someday, once we all settle into the new normal.

A broke his Kidwalk walker with all his wild jumping – a large, substantial spring literally broken in half! We’re waiting for a replacement to be sent from the States. We’re all really missing his independent, upright time. He’s tirelessly throwing his head back – from kneeling, sitting, standing, being carried, etc. It’s quite exhausting to police and cringe-worthy to watch. Might try a sensory suit and some exercises that encourage flexion vs. extension. A and all his different facets of struggle. Struggle or substance? He’s beautiful always.

We hired a private speech therapist for extra communication help. It was SO HELPFUL to get her input. Working on implementing her recommendations. More on that later.

Still daily seizures for A, but less lately. We decreased the clonazepam and think that might have helped. Maybe it’s giving the ketogenic diet more of a chance, or maybe it’s just not helping period. EEG and neuro appt in a couple of weeks.

Currently half way through my first four hours of child-less time in… almost a year? It feels comfortable, quiet. But I miss my kids. But it’s time. Time for us all to do things apart, receive the richness of life that comes from leaving one’s house, and then come back to each other and share all that we’ve learned.

Anger is not my path

I edited down my last post to remove the small bit of whining. I don’t think it’s shameful or inappropriate to complain, but it’s not how I want to spend my time and energy, especially not publicly. I am so thankful for the supports we have, for the therapists, support workers, doctors, etc, that to say anything counter to this (in times when it’s rocky) is… missing the mark. It is not a unique thing, to be confused in a relationship, especially in one of guide/dependent, gatekeeper/caregiver, expert/mother, but it is an essential time to foster dialogue. These rocky parts are moments of realignment, where all parties agree to meet each other in the same place again. I have respect for the expertise of those in the medical field, but I almost always respect my own mother’s intuition regarding my son’s needs more. And I think that’s okay. It is important for both sides to acknowledge this collision as a rich source of learning, understanding, letting go, and gratitude. But it’s a process.

For many anger is a valuable fuel for “making things right”. It organizes a direction of energy toward a cause and that cause can alter things for the better. Outrage is motivation for change.

Two things:

I rarely feel I am 100% right in something, particularly in these very murky waters of providing for a non-communicative, unique child. I drink in the knowledge of others like a sponge, and try to weigh it all with my own attempts at rationalizing a situation, but it’s rarely ever clear. I really appreciate that there are so many out there with the education, experience, and understanding that I do not yet have. It teaches me important things that I did not know, and this helps me parent A better.

I’ve never been comfortable with negativity. In the past, it made me very ill, and in general I feel at odds with the universe when I bitch about someone else out loud. I just want to suck my breath back in and replace it with something good. It doesn’t do anything helpful and feels embarrassing, sour, and ungrateful. And I truly believe that most of the time, anger is a result of a misunderstanding or lack of communication.

Nonetheless, it is human. For some, it is the necessary part of themselves they must tap to make progress. But for me, it is not. I just get bad vibes and feel self-conscious, so I try to work through it and come out the other side to a place of peace (not passivity, but real peace) about the caring that is all around us, acknowledging that we’re all doing the best that we can.

Full stops

There are few things that highlight one’s failings in life like being honked at by a school bus in a populated daycare parking lot. Sigh. For the record, I had followed the empty bus in, saw no children on the curb (school’s out!) and thought she was being nice to let me pass her before pulling out the stop. I generally park in front of the building, along the curb, because A is so freakin’ heavy – already a faux pas I’m sure. But she whipped that thing out as I was going by and then laid on the horn as I did so. The fluster and embarrassment such things can cause is almost a danger in itself. It must’ve been a timing drill as the handful of women on the sidelines with clipboards shot me looks of daggers and I made a lame “oops” face. I quickly thought, “if they only knew how much work it was for me to get to this point” (and still be late, and still look frazzled) but stopped myself at the indulgence.

How careful a parent must be to guard oneself against the disappointments of the world, when already some days can be a struggle. Uncomfortable moments can be crushing, unless you know the drill: shrug, sigh, swear if it applies, acknowledge the okay-ness of one’s imperfection, make a mental note to never do that again, and continue on.

After erroneously dropping A off, I proceeded to the grocery store to pick up more essentials for A’s diet. And in this parking lot, I realised I had forgotten my wallet. So I headed home to furiously weed the garden while E slept in the car seat.

The real day uno

Full ketogenic diet today – full calories. Bowls of butter and coconut oil. Weird feelings scooping it into my child: insanity, humour, and hope. Mostly hope.

A had 8 seizures today, that I could see. More than his usual 4-6 but I think it might just be that I am staring at him more, on this trip. I’m not in the next room cooking dinner or folding laundry while we chat or weeding the garden while he plays. I’m sitting next to him, strolling him around, snuggling him in bed, showing him things in the playroom. We’re together most of the time (except at night – grandma’s on duty then – but he doesn’t visibly seize while snoozing). They last seconds, so easy to miss, unless you’re with him always.

If this diet is going to work (as it does for most kids – 30% improve by 90% or more and another 30% by at least 50%), we’ll notice a change in the next 6 weeks. Back to CHEO for a follow-up appointment in a month or so, and they’ll do another EEG around then as well. Even if seizures are still happening by then, but the EEG shows improvement, it means we’re on the right track and it may just take awhile to improve further. So much promise.

While in hosp, he’s been more quickly weaned off the shitty med he was on since Feb – tomorrow’s the last dose! The zombie-ness has been shed and A’s way more animated, and as I said last night, smiling! I do this thing where I run full blast from another room and jump on top of him, similar to Will Smith’s fresh prince elbow trick, and A is just beside himself with glee about it. Me too. Parenting makes you ridiculous. You do what it takes.

A around a year old

Relativity & health

Eating strawberries on the porch. It’s a beautiful, beautiful day. A is asleep near me – I fashioned an outdoor bed with couch cushions and blankets and pillows. He’s been sleeping all day and all night, fighting off the latest infection, on another round of antibiotics. This time we don’t really know what it is, perhaps a bronchitis type situation. Accepting a future of simple colds turning into more serious infections as a result of A not being a great cougher. Effective coughing takes real brain/body coordination and my little man just has a tough time. An inhaler prescribed this time too, which helps I think.

Recognized now by the local pharmacy. I don’t need to show my ID for the clonazepam anymore. Directions on administering meds mostly skipped. They know me, I already know.

I am actually thankful for it all. The modern medicine, the relatively mild health concerns. It could be so much worse. Reminded of this with each visit to CHEO. Hug your healthy children, folks. Celebrate the endless blessing that that is.

Lately I’ve been reminiscing about days past, trying to remember what life was like when I only had to worry about myself. Annoying, really. It’s much more satisfying to care outwardly.

Last night, thinking about the old days of head-banging to a favourite band in some dank basement, I wanted to bang my head against a wall trying over and over to get little E to settle and sleep. Yet even still, in these moments of irritation, exasperation, exhaustion, even with ill and weary kids, I am glad I am here, a mother of two, away from the city, sitting on a beautiful porch in the country, listening to my child sleep and the birds sing.

Front porch in early spring, hardening-off plants.

Savouring

As I limp through the end of this literary May, finding myself here on the 31st, I pause to think back on the month and how it went…

Honestly, it seems like the blink of an eye. Mothering small children is a wonderful thing but the way the time passes sort of reminds me of when one eats a terrific meal: it is enjoyed thoroughly, maybe even slowly, it’s satisfying and filling, but really it’s done before you know it, and the details are forgotten shortly after, other than recalling it was really good and life is richer for having had it.

Knowing this about now, the speed, vividness, intensity… forces me to pay attention to the details, but with an airy presence of one who knows it is all so fleeting. Savour, settle, keep it together but don’t tie into knots. Don’t hurry something that is already travelling at light speed.

My children are growing quickly.

In Scotland there’s a saying (and they say the same in other places) that if one doesn’t like the weather, then just wait 5 minutes. In Buddhism, they say life is change. We are surrounded by temporary-ness. There is the now but nothing is quite like it, or ever will be. Take it in, then let it go. I try not to get too bent outta shape about any of it… if it’s a tough time, I know this too shall pass. If it’s great, I appreciate the progress. Overall, I enjoy the trip.

Who knows what next month will bring, or next. Who knows what the years will do. There are few constants but love and I sure love being mama to A & E. I love my life… and I hope to keep writing about it.

A in the gazebo