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!