The Best Version of Myself

It is two in the morning - and it's rather stormy outside. It's a right proper storm with thunder and lightning and everything. The cat is apparently freaking out and is alternating between trying to dig her way through the window and jumping on the bed demanding comfort. I have no patience for her at all. Then Cyrus wakes up and I'm even more angry with the cat. And no matter how much I try to convince myself that she's just a cat and she's scared and didn't mean to, I'm just pissed! No sympathy for the feline!

Cyrus at this point is crying and will not be consoled with all the usual techniques. I try to get away with just bringing him to the bed, but that only succeeds in pointing out how warm he is. He had been teething the night before, so a fever would not be of huge surprise. Anyway the only thing that works is holding and rocking him and even that is only partially successful. He just doesn't feel well I suppose. And despite the hour, I feel so patient - my fatigue doesn't seem to matter. Just trying to sooth him.

The cat, however? She's still in my proverbial doghouse! This is her fault!

What? That makes absolutely no sense. What is wrong with me?

Of course this isn't her fault. Cyrus clearly has a fever and is in pain. She's scared probably both by the thunder and his sobbing. He would likely have woken up by himself. And I wonder at my impatience with the cat.

And I think about it and it's strange to me how much easier it is for me to take care of Cyrus - it just almost seems to require less emotional energy in some ways. Is that biological? Is that just a sign of how much I love him? Is there even a meaningful difference between the two?

It's just easier to bring my most patient and "best" self to the surface around him. This is not just to his benefit, but also to mine.

I had a really good day about a week back. Just had so many moments where I felt so lucky - so grateful for the day, the moment, my husband, my son. I don't know, it was easy! It was also amazing!

Then the next day I sort've crashed and that inner peace seemed to be suddenly elusive. I felt down and lacking in energy and motivation both. And it all seemed worse for having had such a fantastic day the day before - I know there's a natural cycle of highs and lows - and I found myself resentful that lately the highs seem so brief and few in comparison to the lows in-between.

Cyrus wasn't having a good day either. He might've been teething or growing - who knows, but it was overall mild. He was whimpering his sad almost sob, made more pathetic by the fact that he doesn't actually cry out. I just felt I needed to make a special point of trying to play with him. And when I picked him up I realized that I felt lighter. Joyous really - in that moment anyway.

I realized that I'm actually able to do this a lot. That even when I'm having the worst day, spending that moment or two with him seems to bring me up. Seems to lift me out of whatever emotional or mental mire I seem to be bogged down in.

How does he do that?? He's like magical!

It feels like love I think. It feels pure. But whatever it is, I'm grateful for it.

Now to be absolutely clear and not set expectations to unreasonable high and ridiculous levels, there are definitely days where I am too exhausted or too stressed and I don't have the capacity to be that patient loving self. Days when I hand him to my husband and say "You feed him. I cannot handle it." Nights where he wakes up at three in the morning and I just want to burst into tears. No, that's not right. I don't want to - I do burst into tears.

But there's something about him that makes it easier to take care of him - where it just takes a lot more to get worn down to this point. He just seems to bring out my best self more of the time. We'll have to practice bringing this out for the cat's benefit as well.

Christmas Shopping - Warning! May Contain Spoilers!

In the last few years I have discovered the joys of internet shopping! Not only do you get to avoid the crowds, but you also have so much more to choose from! And as I tend to want to find things for my many nieces and nephews that they will find super fun, and interactive and also stimulates creativity or curiosity! And sometimes the toy store just doesn't have things that meet my educational fun standards!

My oldest niece wants to be a science teacher when she grows up and there is no way that I am not milking that for all it is worth with circuit and Electricity and Magnetism kits!! I will totally admit it! I like physics best for some reason! Though I would argue that I'm not completely biased in my selection of gifts because for young children, experiments and demos where you can see stuff happening instantly after something you've done is a huge plus! Rather than having to wait weeks and weeks for plants or crystals to grow.

And did you know that the most stolen item out of elementary school classrooms is magnets? They are just that magical! That takes care of the younger two nieces!

And my oldest nephew is determined to become a spy when he grows up. I don't even know how one goes about that! But I found a bunch of little spy equipment gadgets for the imaginative aspiring stealth agent.

And then it hit me! I'm am getting science related everything for all the girls and make believe accessories for the boy! Take that gender norms!

And I realized a whole second later that I had forgotten the youngest nephew - he was born only a week ago though, so I suppose those mental pathways just aren't quite solidly in place yet. I'm certain he will forge some huge mental highways in my head in no time at all! And then I had just as much fun pouring through online directories of cardboard books and bright dangly things you can bat at.

I'm telling you, shopping for children is like one of the best things on this earth! It's just so fun! And it's not really the shopping that is fun - it's the anticipation of how excited they are going to be. And the stories and pictures my siblings send to me after the gifting when they are in the thick of whatever it is.

So I've found something for everyone and I'm in the process of checking everything out when another thought hits me like a brick wall.

It never even occurred to me that I should get something for Cyrus.

I sit there staring at the screen for a bit, struck dumb. Because it occurs to me that I don't really know what to get him. I have been telling our extended family that he needs winter clothes, which he does! But when I'm shopping for clothes I feel like I'm shopping more for myself - finding cute things that I love, but which he could care less about. He doesn't really respond to most toys - even the bright dangly bits. I suppose I could get him something super flashy. His occupational therapist had something that lit up and spun around into all kinds of patterns that he found positively riveting, but he already has a few of these and the interest has started to wane. He can't sit up so many of the mini cars and scooters and bouncers just are pointless.

And it kills me that I don't know. I continue with all my other purchases figuring it doesn't matter anyway. Cyrus will never know the difference. Only I will.

He will still go. He will be surrounded by those that love him and truly see him. Christmas last year failed to manifest any smiles, but he was more engaged and aware than he had been the whole six weeks prior! So I know it's good for him. And I would be shocked if there were no smiles this year.

But a week goes by and all my orders start to show up, and I find that it still bothers me.

What would he enjoy that could be just for him?

And really I just needed to think about it. Because the ideas start coming!

He loves dancing! Spinning in circles. Especially when I sing to him at the same time.

Cyrus and mom - both a little congested.

He also is a huge fan of his dad's roller coaster rides.

And honestly these are huge gifts of delight for him, as we may not be able to give them to him forever as he grows too big for us to spin around.

And he loves cheesecake and still has the ability to eat it! Gotta take advantage of that too!

So maybe I just need to be more creative.  Maybe I need to expand my definition of what a gift is. Because the reason shopping for my nieces and nephews is so fun is because of the joy it brings to them. So anything that I can do or share with my son that brings him joy should totally be defined as a gift.

To me, the most important gift is that he feels loved.

...

PS. I mention this conundrum to my husband shortly before posting this and his response was immediate.

"He needs a blanket."

"What?"

"Another big floor blanket - like that one!"

I dunno. I liked my answer better! ^_^

Cyrus hanging out on his floor blanket. 

...

This week we've all been sick and while that prevents us from getting out much (like to meet the aforementioned new nephew!) we keep working hard. Mom's been writing a lot of tests, fiction, and in this blog (as you may have noticed)! Dad's been painting miniature figures for various board games. And here is Cyrus working with his therapists on supporting himself:

Cyrus learning to get into the crawl position.

Cyrus standing up!!! 

Self Recriminations

As a teacher, it is incredibly easy to feel like a hypocrite quite often. On one hand I'm trying to teach students the importance of meeting deadlines and on the other I cannot for the life of me seem to get through this last period of lab write ups - an assignment they turned in like over a month ago. I'm trying to teach them healthy ways to manage their frustration and stress, and simultaneously I feel on edge and like I'm snapping unfairly at students.

The last week and a half or so has been especially hard, though I don't have anything in particular to point to as the source of all my woe. I guess the little things just add up. A few nights with not quite enough sleep because of teething and birthday parties. Students are also stressed and sleep deprived as they head into the finals and the end of the semester. I had an apparently overly ambitious lesson that mostly flopped and they did not handle it well. Suddenly I'm being bombarded by frustration and anxiety from students panicked that they don't understand something that they are going to be tested on to the point where I cracked.

"Keep your stress to yourself! Don't you know that stuff is contagious?! I certainly don't need it!" I wanted to scream at them. But I didn't - instead, I just absorbed it all talking to one strung out kid after another, reassuring them that I know most everyone did not understand - that we clearly need to go over it again. More slowly and broken down into more steps. It's fine - don't worry about it!! Cross out this whole section on the study guide if that is cathartic for you!

Seriously, won't you please calm down?

Many of them did and more than a few did not. And I just took it all on. For better or worse, that's what I do!

Terrible plan really.

But it's a new week. I'm going to get through this god damn set of labs if it kills me! Only then the online grade book stops working for hours so I can't enter in any scores. And just when I finally feel like I'm making some progress the medicine alarm goes off.

So irritating! I hit snooze once to finish the one assignment I'm looking at. Then I get up to make the medicine - it's a pretty easy task.

And while the vigabatrin is dissolving I brush my teeth. Then I brush Cyrus's and we go through our nightly routine and I eventually get him settled and follow him to dreamland shortly after.

Only he wakes up at like one thirty in the morning. And I just want to burst into tears - this is not the night little dude for you to be so completely wide awake. I'm grateful that at least he's not crying. I look into his bright eyes and pray that this is not a new pattern.

I trick him into accepting a pacifier and try to go back to sleep, but I can't knowing he's awake and rolling around - knowing that I should be on seizure watch.

By three o'clock he's making a funny breathing noise. Like there's a click in the back of his throat. We're supposed to be receiving some medical equipment in the mail I don't know when so we can do a limited sleep study at home to evaluate him for sleep apnea. But for the moment he seems okay. I give him the pacifier again - he accepts it gratefully and I wonder if he's been asleep at all in the last 90 minutes. I know I have, though it doesn't feel like it.

At five he's got the worst hiccups in the world - he must be stressed about something. We recover the pacifier one more time and he finally goes back to sleep - like instantly!

I am not far behind, but then my alarm goes off and it feels far too soon.

Kyle gets up after I'm ready and just about to leave. He's making Cyrus's medicine and he seems confused.

"Did we not give him medicine last night?" he asks. (Bless his heart for saying 'we' instead of 'you'!)

My response is automatic. "What? Of course we gave him his medicine!" Anything else is completely unthinkable.

But he's holding up the glass that has just the right amount of liquid to be dissolved vigabatrin.

And the other oral syringes are there - laid out with clobazam, keppra, and fish oil - full and measured, all lined up ready to be administered.

It still didn't feel real - even with the evidence staring me in the face - we have never missed a dose. Not in fifteen months. Not even when we were ordered to give him steroids every six hours around the clock!

Suddenly the dread and the panic is all my own.

Cyrus didn't sleep well - he was awake off and on for at least four hours last night. (Maybe because he didn't get all his sedating medicine!) And I wonder how many seizures he might have had where I didn't check - that click in his breathing? Did I check him fast enough? Did I sleep through his struggling through the night when he needed me or needed medicinal intervention?

I am so angry with myself for being wrapped up in the minutiae of the day that I lost track of the routine. Angry for feeling sorry for myself for being so overwhelmed with everyone else's needs. Angry for being irritated that the medicine alarm had gone off in the middle of my task. That alarm literally keeps my son alive!

And despite how well he has been doing, Cyrus suddenly seems so fragile to me all over again. His situation so precarious.

Instead of leaving for work, I march into the bedroom knowing he's supposed to get up for his morning class any minute anyway.

I pick him up and his face immediately crumples in objection. Of course it does - he didn't get any sleep.

But I'm just grateful that I didn't walk in to catch him in the middle of a status event. We were quick to stuff him full of meds and he was quick to fall back to sleep.

According to dad's report, Cyrus did have a rough day, though I'm grateful to report it was not in terms of seizures and was more to do with seeming sleep deprivation, though he did throw up once. I have no evidence that this had anything to do with the missed dose.

And when my medicine alarm went off this evening I was only too glad to drop everything to focus on that task. That task that is keeping my son out of a perpetual state of chronic seizing, that is keeping him out of the hospital, that is keeping him alive to share all his joyous smiles and sleepless nights with us. For today at least, I did not feel the least bit irritated by it - only grateful.

The Winter Hypothesis

November 5, 2015 - The Last Smile
I had a love/hate relationship with this picture during the Dark Times. 

I  sometimes refer to the Winter of 2015 as the Dark Times in our family. I call it this because from November 6th 2015 to February 21st, 2016, Cyrus did not smile. Not once! And that's not to say he wasn't expressive at times. He was! He could make the cutest and strangest of faces, but it was never a smile. And even these instances were often few and far between. More often than not, he was stone faced, distant, and out of it. I called him the zombie baby when he was like this.

December 2015 - Super expressive day!

This is most likely due to the fact that he was having multiple seizures a day. I believe sixteen was our record for one day, but we did get it down to three to five fairly quickly and that number just kept going down as the year progressed. The biggest drop was when we adopted a new medicine in February of this year, which I credit to bringing back those smiles.

But here's the thing, after that, even with no increases in meds, the seizures kept dropping. And in June, he stopped having seizures altogether, again with no increase in medicine. And he stayed seizure free almost all summer long.

When they made a resurgence, we attributed it to a growth spurt (because he had grown so much in so short a time, his original doses were no longer cutting it). They gradually became worse and worse and in October we made a dramatic increase again. And he was again seizure free! But this time it only lasted about two weeks.

I got to thinking, and I really feel like he's struggled a lot more now that it's gotten colder. His meds just don't seem to get him as far. Thankfully the smiles and giggles have not vanished altogether even if they are harder to provoke, but he seems just out of it or resigned more often again. I don't like it because it brings me emotionally back to the Dark Times!

February 2016 - One of the first returning smiles! 

Now, I can't really say for sure that it's the cold that is causing this. This is an anecdote and even in Cyrus's case this is literally only the second full winter of his life, so I literally only have one and a half data points.

But the hypothesis does have a certain appeal to me. His disorder is metabolic in nature - which means that his body has a hard time producing all the cellular energy that it needs. So in the winter, when he has to expend more energy than normal staying warm, he might have less on hand to meet his neurological needs, resulting in more seizures and less cognitive engagement in general. Whereas during the summer, when it was warmer, he didn't have any seizures and was beyond present all the time!!

I take comfort in the fact that this winter so far has been far better than the last. And even if we haven't remained seizure free, we've avoided the status events. I am amazed at how much this little guy has grown! And so excited that he has continued to make progress on his milestones.

November 2016 - Learning to self sooth!

Just in the last few weeks, he has outgrown all his socks and needed a new winter wardrobe. I realized in trying to order replacement socks that I actually have no idea what shoe size he wears. He has shown some precursors to crawling by consistently getting up on is knees. And going through the trauma of cutting six teeth at once apparently served as sufficient motivation to figure out how to get his fingers in his mouth! Maybe some self feeding will come next!!

In other milestones, Kyle and I hired an actual real life baby-sitter! Trained her a bit in our emergency protocols, how to feed him, and how to medicate him. We went and saw a movie together - Arrival. And I have to say it was one of the best movies I have seen in a long while! I must admit there was a scene in like the first five minutes that made me cry! Dealt with the human experience, language issues and how alien real life aliens would be extremely well. Highly recommend!

And this week, Kyle and a friend also released a cell phone game for Android that he's been working on part time on and off for the last year in-between caring for Cyrus! If you like puzzle games, this is a totally free way for you to support our family! Just get addicted to this little ninja game! And when you see an ad, know that its revenue is going towards Cyrus's care!

December 4, 2016 - Cyrus is not a huge fan of sushi apparently.

December 4, 2016 - But he had a grand time at Eugene's house!

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!