Declaration of Independence

You know that phase when your child goes through that first fierce independent streak? Where they insist on doing everything themselves? And you admire their determination, but you're also thinking, "You can't do it by yourself yet. Please please please! Just let me help you!"

Cyrus has been doing the Cyrus equivalent of that. Where he just has so many opinions! He thrashes back and forth trying to get out of his chair throwing out limbs in every direction or throwing his chest or pelvis forward to break free or slide forward. He is grabbing medicine and food pouches out of our hands and then squeezing it all over all of us. And rolling away from diaper changes. All while moaning insistently at us in rebellion when we insist that we have to take care of him.

There's one absolutely wonderful thing he's starting doing again, which is throwing one arm around my neck! I think he's doing it to hold on, he sometimes will hook his arm onto other things as well. But to me, it feels like a hug. And I like that feeling. A lot! Just this simple action gives me an earsplitting grin! Then, not a second later he decides to elbow me in the face!

And really, all these things are exciting to me even as they are aggravating. Because, as you may have guessed from my last post, the last few weeks have been rough with Cyrus having more breakthrough seizures that have been longer and more intense. And more debilitating to his expressions, personality, movement, and opinions.

During the last month I had been unable to get ahold of our neurologist substitute (Cyrus's regular neurologist is on maternity leave, and boy, do I miss her!! Though I absolutely cannot begrudge her absence!), but we finally had our face to face appointment and were able to make a plan for medication adjustment! And oh my goodness, the difference it makes is amazing!! We had one day of decreasing seizures, and the following three days have been seizure free!!

Now we just have to put up with pharmacists calling us in concern that his current dosage is too high.  I roll my eyes at this. Standard protocols do not understand how much of an edge case we are! Cyrus handles sedatives like his mother - they burn through his system like wildfire. And for a few of them he has a reverse reaction, in that they make him hyperactive rather than sleepy, which is fortunate for us as it means he can handle the higher doses that his condition needs to maintain some semblance of seizure control.

As long as the insurance company doesn't call with the same complaint, I think we're good! I'm probably okay with my pharmacist worrying about us after all.

Anyway, my point is, keep up the defiance Cyrus! I enjoy your opinions and objections much more than the cooperative zombie baby that sometimes takes your place.

I F***ing HATE Seizures!

My eloquence is gone in these anxious moments of panic and anger, so of course I react by deciding to write what almost amounts to a poem. Well... it has a rhythm to it in any case that I can hear in my head as I write. Maybe I should become a spoken word poet!

Here it goes.

I Fucking HATE Seizures!

One minute we are dancing, swirling, and spinning. The pure joy of a child's delighted laughter wraps around me like a cloak.

Without any warning or sign there's a sharp jerk and he is limp in my arms.

Then the convulsions start. And these ones are strong.

His arms and legs extend into unnatural contortions - his little hands shaking with tremors.

And his eyes. It's in his eyes. His eyelids are flicking with a nervous tick even as his pupils rapidly jerk back and forth like something out of a horror movie. Something that you think shouldn't be able to happen in real life.

I can't stand it when the twitching is in his face. Physiologically it's not really any different from any other body part, but somehow when is on his lips or in his eyes, it's like it's stealing his expressions. Like it's stealing more of who he is.

I place him on his side on the ground. It takes me several seconds longer than it should with my mind not quite paralyzed with anxiety to figure out which side is his left.

The delay irritates me. I should be able to handle this by now. I should be able to remain calm.

And I can. Because I do.

I check the time automatically, my experience taking the pilot's seat, over the anxious concern, the fear that he's gone, and the anger at the unfairness of it all.

Because that's the thing. The feelings aren't ever going to go away. Not during a seizure.

At least not a seizure this bad - this intense. It's just, at some point the habits and procedures, done so many times before, override the momentarily paralysis of uncertainty. There's nothing to be uncertain about.

This is unfortunately far too familiar territory.

The convulsions stop and he's just still.

Unnaturally so.

I stroke his cheeks, his forehead. I'm looking for a reaction.

Any reaction at all.

When I don't get one, sometimes I pinch him. Hard.

Sometimes, when he won't respond to comfort and touch, he will still respond to pain. I always feel bad - that I'm hurting him on purpose - that's a feeling that doesn't seem to fade either.  But I do it anyway.

I have to know he's okay.

That he's back.

But this time there's nothing. He's still impossibly still.

I'm tapping his cheeks and trying to get his gaze to turn to me.

It takes me a minute to realize that his eyes are still shifting rapidly back and forth. Just barely.

Almost like he could be dreaming. How I wish he was merely dreaming!

But I know that he is in fact still seizing.

I check the time again realizing that he's been seizing this whole time.

It's been five minutes.

It's never been five minutes before.

Well, not since over a year ago. Before he was on three separate medications. Before we established our emergency protocols.

So again, on autopilot, he gets his diastat.

And it works. It stops. But he's still not responsive.

Just lying there, but at least his eyes are calm. At peace.

A moment later he starts shifting. Just a bit.

And another moment later his line of sight is darting around, this time in confusion rather than seeming possession. I give him a pacifier, which he takes like a man in the desert takes water. Desperate for comfort.

I find myself wondering, does he even remember the dancing? Does he remember the spinning and the laughter?

Or did the seizure take that memory - that joyous experience from him?

I make his evening medicine half an hour early.

When I come back to his side, I go back to caressing his cheek and he looks right at me. Like he knows me - like he trusts that I will take care of him even when the world makes no sense.

Sick vs Teething

Which do you think is worse as a parent? Your child having a cold or gaining a new tooth? In this household there is no contest.

Teething is the worst! You have a inconsolable child who has a slight tendency to drool on everything and tries to bite you! And if he the drool is even slightly pink with blood during therapy or class, they insist on filling out an incident report.

When he's sick with a cold, he doesn't freaking care! Not at all. He snores and sniffles a lot more. But he almost actually seems to verbally respond and smile more than on a regular day! He definitely is slower - he doesn't move around as much, is slower to respond, and takes longer naps, but he almost seems to enjoy it! He didn't used to - when he was more of a baby than he is now, he had to cuddle, but now he's happy! Maybe its the slower pace? Or that he doesn't feel as urgently hungry or doesn't have to go to therapy? I don't know! He is strange in this way.

Commiserating on being sick with dad

Practicing vowels with mom

When I am sick I'm much more cranky and irritable, and I certainly don't smile as much as Cyrus does. I guess I'm just too busy being miserable. Perhaps, I should follow his example. He accepts the illness far more easily than I do!

Fevers are a different story of course - mostly because they lower the seizure threshold, and vomiting is scary for medicinal reasons as I have previously discussed. But by themselves, colds are not bad. At least not when Cyrus gets them. When mommy and daddy catch it from him, that's a different story.

I bring this up because Cyrus has spent the last few days with a cold and we have enjoyed the time and slower pace, but yesterday our calm experience was rudely punctuated with a molar deciding to break through, which was far less fun...

In other news, after five months of fighting with changing insurance companies, getting on medic-cal and getting them to talk to the seating company, Cyrus's wheelchair has finally arrived! He looks so good in it! He has better positioning, been eating better, has had less issues with chorea when in it, and even managed to take a nap in it once. I'm so excited to take him out! Now we just need to get some kind of shade/umbrella attached to it!