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!

To Have Another Child?

In the past before Kyle and I started trying to have children, we had agreed that we wanted two, but I had always joked that we would probably end up with three! And then we started trying and getting pregnant was surprisingly easy for us. Staying pregnant turned out to be more challenging. And after three miscarriages in a row, the idea of having three children suddenly felt rather romantic.

When Cyrus was first diagnosed we were both slammed by waves of guilt. It very much felt like it was our fault. He had inherited this disorder from both of us. Yes, we knew we were at slightly higher risk than most couples, but I read all the research on the topic, and the risk felt small - an additional 1-2%. And yes, we went through genetic counseling. Everything came back clean.

But if I've learned one thing from my miscarriages and from Cyrus's diagnosis, it is that statistics don't matter. I mean they do matter! They can tell you a lot when you're talking about a population of people or making hospital or public policy! But they don't apply to the individual. As one of my doctor's put it when I was looking for reassurance - for the individual, the chances are either 100% or 0% and you can't know until after the fact. She was not particularly reassuring, but she was honest which I found to be far more helpful and refreshing.

It took a long time, but eventually I came to terms with the fact that it wasn't our fault. That this disorder is so rare that no screening ever would have caught it and there was no reasonable expectation of complications or problems.

But I cannot plead ignorance anymore. Should we have another child - we know exactly what the risk is. And it's not 2-4 percent - it's twenty-five! And for a time, that romantic ideal of having three children seemed really far away.

I still want it though. But for awhile, I felt like I wasn't allowed to say it out loud. That if we were to try, the world would call us selfish and irresponsible. I felt judged - or maybe I judged myself for having this desire knowing there could be some pretty big complications.

When I expressed my doubt that we would have any more children to a very dear friend when Cyrus was only five months old, she expressed shock that I would give up my own dreams. And that sentiment gave me hope again. Hope that I was allowed to want this and that not everyone would judge me for it. That I didn't have to judge myself for it.

Some afternoon not too long after I was hanging out with one of my sisters. We were playing with Zillow - looking at housing prices and dreaming about the homes we wanted to buy and build. I commented about wanting a three bedroom home, and she seemed startled. She asked what I needed the extra bedroom for. And I told her, "Oh you know, it's nice to have an extra room, or who knows we might need it if we have another child."

"You would have more children?"

And there it was! I felt defensive and irritated that I felt the need to defend myself.

But it bothers me. It bothers me that the world feels like it gets a say. It bothers me what those assumptions imply about Cyrus's life. That if you know there's a problem, that we would not have kept him or that his life is not worth living.

I know that we would have kept him. Because during the second trimester I was extremely anemic, to the point where my doctor was concerned that he might have Thalassemia - a potentially lethal disorder where he is not able to use iron to synthesize hemoglobin on his own - so he was potentially stealing all of mine. She ordered a genetic test for me. But the lab screwed up the test - and the results were inconclusive. At my next appointment, which was scheduled with a different OB entirely on my regular doctor's day off - she came in anyway dressed in her casual clothes in a total panic - telling me I had to go get this test done again as soon as possible - so we still had time to decide whether or not we wanted to abort if it turned out that he did have this disorder.

I remember telling her quite calmly, that it didn't matter. I would get the test (though maybe not as urgently) just so that we would know and could prepare if need be, but that if this child wanted to be born, he would be born. That whatever obstacles or health problems arose, we would deal with them as needed. Going through three miscarriages of very wanted pregnancies can give you that level of fortitude and commitment.

I was terrified though. And when I found out a week later from one of my dad's cousins that Thalassemia actually ran in the family - I freaked out! But it still didn't matter. When the test came back negative another few weeks later, I was so grateful. We were going to have a healthy child!

After Cyrus started having seizures and eventually received his ADSL diagnosis, I remember feeling so grateful for that scare. Because it meant that I knew that I would've kept him - that in some weird way I made the choice.

And it's certainly a choice that I have not regretted despite a few in my life trying to convince me that I should. As I have said before, Cyrus has given me two things. A greater sense of awe in all of life and development. Watching any child make the smallest achievement feels like a miraculous accomplishment. And when Cyrus does something new, it quite often brings me to tears - the best kind of tears. And he's taught me to be so much more present and grateful in every aspect of my own life.

How can I regret a choice that brought me him and brought me to this level of gratitude and awe? I can't.

And suddenly we're nineteen months into this journey, I don't really fear the possibility of having another special needs child. I mean, we're already living it and it's crazy and messy and it has stretched us and been all consuming and is freaking beautiful and sometimes really hard and sometimes even really easy. No seriously, I said easy!

I could totally do this again if I had to.

And that's when my husband drops a huge dose of pragmatism on my head. I need that sometimes because that last epiphany was definitely an emotional one (though definitely valid and a true realization about me and where I am at this moment).

Cyrus's care really can be all consuming at times. It's getting harder to get around as he's getting bigger. The boy has a minimum of four appointments a week and a wheelchair that takes up all the space in the world. His medical bills are frighteningly huge and in order for him to continue receiving his fantastic services and care we have chosen to try and stay in one of the most expensive places on the planet in terms of cost of living.

So I have to ask myself some of the other practical questions about the situation. I'm emotionally okay with the possibility of another child with a problems, but is everyone else? Does my family have the emotional capacity and strength to handle two of these? What about if Cyrus dies? Can I go through that twice? Can my family?

What about financial resources?

What about time - will having another child, healthy or not, take away from Cyrus and his needs? I imagine, every parent asks and weighs that question.

On the other hand, can I manage the next ten years without accidentally getting pregnant? I suppose I can - there are options, but there are consequences to those decisions as well.

And if we decide we can't have another ADSL child for whatever reason, can I emotionally get through a selective abortion or go through the process (and expense!) of in vitro fertilization when there's no guarantee that it will work?

What happens if Cyrus defies all odds and outlives us? What will happen if he doesn't have someone in this world that cares for him unconditionally? On the other hand, is it even remotely fair of me to expect a sibling or cousin to take on that responsibility?

I have been thinking about all of this for awhile now. I think that if Cyrus had been healthy we would be talking about baby number two right now.

And I had the privilege of having my youngest niece over to visit a weekend or two ago. And watching how attentive and sweet she was to him just makes my heart ache. She was more than ready to tell me what he was upset about or that he wasn't! She was just kidding! He's actually happy right now! And Megaman is his favorite toy because blue is his favorite color! And she's going to roll on the floor with her legs up in the air just like him! And I would just love it if that kind of beautiful interaction was more of a regular thing!

I don't know that I have satisfying answers to any of these yet - as another dear friend has told me on a few occasions "It's too soon." But I'm definitely poking at it, talking about it, and considering so many different pieces.

I know there are families with more than one special needs child and others that decided that they couldn't have anymore. So many models for me to look up to and be inspired by. So many sources of strength and inspiration. And I think I understand how families could make each and every one of these choices better than I ever could before. That understanding, rather than judgment, can only be a good thing in my mind and is yet another example of how Cyrus and this experience has made me a more compassionate person.

I will admit though that sometimes I find that I envy families that had a healthy child or two first. The ones that didn't have to weigh all these decisions quite as heavily - the ones that didn't have to fear getting pregnant.

Strength Training

True confession: I hate exercising! I hate it!! I enjoy physical activities like playing a game, hiking, or biking. But exercise for the sake of exercise is absolutely dreadful. Cyrus seems to be trying to help me out though. His favorite thing right now is to be lifted up and down or even just rocked back and forth like a pendulum. And strangely enough, I have recently discovered he likes it better when you do this slowly rather than fast. Which actually makes it harder to do, in terms of strength! And while I hate weight lifting just as much as any other exercise, there's something far more rewarding about it when you get smiles and giggles out of it.

And over the last few weeks the little guy has decided that mom's strength training routine needed to be pushed up a notch because after staying at a consistent 22 lbs for the last 2- 3 months, he's suddenly decided to eat us out of house and home (seriously, this tiny child is now eating more calories a day than I do) and put on two pounds in under a week!! Let me tell you, my arms have been feeling it! You wouldn't think that two pounds would make that big a difference!

But anyway, I've been wondering about what this means in the long term. Wondering about how other families cope once their child outstrips them in size and weight. What happens when Cyrus weighs as much as I do, but doesn't move independently?

When pondering such questions, I tried to do what I always do! Research! Only, I don't really know what to call it, and basically found two types of results:
1) How to help your overweight child lose weight.
2) And too many a rant about how the US has absolutely no services or resources for special need adults and their parents often take care of them until they are no longer able to always worrying about what will happen to their children when they are no longer around.

And while both are unfortunate situations, neither is really applicable to my current mental musings.

A friend of Kyle's has a friend with an immobile child - and her comment was that his dad was just really strong.

I don't know that I really take comfort in that answer. Kyle is really strong and actually likes exercise. (He's weird like that). Because I would like to continue to take part in getting Cyrus around. I certainly don't want to have to put all of that on my husband.

I will remain open, keep doing more research, and talking to more people. Maybe even reluctantly do some exercise and learn techniques for moving people around that don't want to be moved.

Talk to Me

I love taking Cyrus to social events where there are a children under the age of five and under two is even better! Because they will just swarm all over him - they run up excited to look at the cute baby! And the most common thing they say is "Wow! That's a big baby!"

It's quite an accurate assessment really. He still doesn't really have hair so that helps with the baby impression, but he also moves like a baby! His arms and legs still flail a bit making him look uncoordinated and quite a bit younger than he actually is. But he is pretty normal in size for an 18 month old - tall and thin for his age. So he really does look like a ridiculously big baby!

At which point a mom will ask, "How old is he?"

"He's 18 months!" I tell her.

At which point she glances at her own 15 month old daughter, who is tottering unsteadily around constantly trying to poke my son (this child would just let out the most precious giggle every time she succeeded - my heart definitely melted a bit), and then comes back to my flailing son.  And she is totally silent. She doesn't say a word more about my son, though she is suddenly way more persistent about trying to insure her three children don't bother him too much despite my assurances that they are totally fine and more than welcome!

And the silence made me sad. Though I couldn't exactly figure out why. Because it definitely wasn't the first time and I assume she was just trying to be polite. It took me hours to figure out that what I really wanted was an opportunity to swap parenting stories, an opportunity to commiserate, an opportunity to talk about my son!

Because he's precious and happy and oh so strange and loves to dance (with help!) and learning to roll to every corner of a room!! I have more than a small suspicion that he will love roller coasters if he ever has the chance or ability to ride them! And sometimes, he wakes up three times a night or gets so sick he can't keep anything down. Sometimes, playing with mommy and daddy is the best thing in the world and sometimes he wants nothing to do with either of us.

I want to tell you all - It's okay! You don't have to tip toe around me! This is our reality! You're not going to say or ask anything that I will find offensive or startling. I know a bit about how children normally develop and I know that my child is on a different path. You're certainly not going to give me any worse news or realizations than his doctors already have. In fact, your child's accomplishments and milestones are just that much more amazing to me because such achievements are not a given in my world.

So bring on your morbid curiosity! Ask anything you want! And then after I confide our abnormal struggles, please don't hesitate to share with me your pride, your frustrations, and your worries about your own child! I know you want to gush about your kid!

Because I very much want to gush about mine!

...

Other updates: 

I have gone back to work - and during that first week I swear Cyrus was mad at me or something as he starting denying me his gorgeous grins. I saw not even a glimmer of a smile for like three days! Then this week he caught a cold - and I think that was unfortunately that was my fault. Nothing serious, but he has been extremely congested. And suddenly he's like the happiest clam ever! And it's like - I don't understand you kid! You really are so strange!! We have spent the afternoon and evening listening and dancing to Lindsey Stirling's new album - Brave Enough. And in between coughs and sneezes and sunburns he has just been laughing and giggling in ways that I haven't heard in weeks! We also upped one of his meds and it looks like he's back up to seven days seizure free! Yay!

He started at the puzzle blanket...

Science experiments with cool whip! 

A Bad Day

A bad day after two months of good ones is especially hard to take. Hell, this wouldn't have even been considered a bad day by the standards of the old pre-seizure-free baseline. And I know that, but I think I struggle more with the what the event could potentially represent for all the tomorrows.

Cyrus had three seizures this evening. At least we think he did - we're only sure about one of them. These new seizures are subtle - he goes quiet and still, which is what helped me to even notice because he's never still. And then, when you look at him closely he's just slightly shaking. You can see it in his arms and head - just a slight tremor that you would totally miss if you weren't looking for it.  Which makes me also wonder how many of these events we've missed. I don't think it could have been too many before yesterday because after the seizure he's been fussy and sleepy.

And that's what gets me. Why I feel tense and tight and don't really want to do anything more than cry at the moment.  After a seizure he's confused and disoriented. The seizures are bad enough - but I really don't want him to lose anything that he has gained. And he has gained so much in so short a time. I don't want to watch it fade away and I'm terrified that's exactly what is going to happen.

Worse, I go back to work in just a few days and won't even be here to comfort him when nothing makes sense.

I'm trying to rationalize these feelings away even though I know that's not healthy nor helpful. It's just I understand Cyrus's disorder. I know how it works and while I knew he would most likely start to have cluster seizures again, I hoped (and still do) that that day would stay far far away in some distant future. I want that moment where I'm more surprised that he's had a seizure than not. I want it to stay.

I hate that I'm putting this up on the coattails of such a positive update, and I sincerely hope that my fears and pessimism at this potential trend is just a bad day and, in the end, unjustified. That it will be another five days or another fifty before there's another seizure. I just had to write it all out - how else will I sleep with all these unprocessed fears eating away at me?

Cyrus emotes in pulses at times with both crying and smiling - don't know why,

but I find it amusing. It's probably a sign of a neurological problem or processing

delay, but we already knew that so.... I'm going to continue to find it amusing.

Milestones

When we're catching up, one of my sisters will often specifically ask what new milestones Cyrus has reached. Or if he's doing anything new. And a lot of the time, I have had to tell her no. But honestly, I never found this answer discouraging or upsetting because, as I explained to her, often the changes are so subtle and then suddenly, seemingly out of nowhere, he will start doing something totally new all at once! These last few weeks have been rich beyond belief in such moments. 

During Cyrus's last therapy appointment Cyrus used his eyes to follow a flashing wand. His eyes, and not his head. His therapist mentioned that this was the first time she had ever seen him demonstrate this level of ocular precision!

His head control and positioning has also improved immensely. He doesn't arch as often or as hard, and often it only takes a nudge to encourage him to bring it back up (unless he's really tired or cranky - then he wants to arch). He does not really ever drop it forward anymore. This is especially exciting as his therapist says we can now work on teaching him how to sit up. But more importantly, it means we can now play airplane! Which I definitely indulged in more than once on our vacation this last week.

Over this last week I have also noticed him bringing up his arm and wrist to his mouth. He's been gnawing on it for days the way another child would chew on his own fingers and hand. He does this mostly when he's tired or hungry and I think he's actually doing it to comfort himself! It's clearly intentional.


In addition, his social smile, laughing, and social vocal response have become incredibly consistent. On our trip we visited five grandparents, two aunts, four cousins, and three other houses filled with really good friends and tiny children. And almost every time someone spoke to him he'd respond with an "ooh" or if they were making faces, he'd start smiling back! This behavior has never been so consistent.

And lately, he's just loving tummy time. He's gotten really good at holding his head up here somewhat on his own - though he's still a bit wobbly. And in the last few days he specifically has been showing some precursors to crawling by sticking his butt up in the air getting his knees under him as well as actually pushing on the ground with his hands.

Then yesterday, he rolled over from back to front like it was the most natural thing in the world. And then he did it again. And today he just won't stop. He's already using his new found skills to make escape attempts from diaper changes and floor blankets. He does occasionally still get stuck with an arm underneath him, but this doesn't seem to discourage him - he'll just keep trying to flip his leg back over even harder with flexibility and core strength that I envy. He'll probably have some sore abs tomorrow.

Roll over! Roll over! Send Cyrus right over!

The only bad news I have to share is that we broke our 51 day seizure free streak this last Tuesday. But he immediately slept it off and was back to his smiling, laughing, oohing self. We're now into day four of attempting to establish a new record!

        

In other news: 
After three phone calls we still have not received our COBRA enrollment packet via snail mail or email. And as always, we have to refill stupidly expensive prescriptions relatively soon, so my anxiety levels are a little higher than normal, but we have a few contingency plans, so I'm sure it will all work out.

And we did just receive notification that we have been approved for Medi-Cal under the disability program, so if Cyrus gets his Medi-Cal card in the mail next week this might help with all the prescription nonsense - even the specialty pharmacy refills - and our financial sustainability near all these doctors that we love! Hopefully, one of these insurance programs will iron itself out in time.

Cyrus is starting a new class on Monday, that is a social and sensory development class. It has several other students with developmental delays. There's lots of singing (bilingual singing!!) and sensory and physical play.

On Friday I go back to work for the new school year and while part of me is sad that I won't be able to spend quite as much time with him, I'm beyond grateful that I had the privilege of seeing Cyrus make so much progress while I was at home to see it happen!

Time hop: 

Cyrus a year ago! When he was on steroids.

Note: In the tech migration from my old work gmail account to my personal one, I seem to have lost all pictures and videos on my old posts. This will be repaired! But it will be gradual.

The Impact of a Stranger

William - 9 years old

Michael - 5 years old

I’m a teacher and well, crying over other people’s children kind’ve comes with the job. And I knew that when I found the ADSL facebook group that I would sometimes be subjected to stories of children not doing well and that it would hit really close to home on occasion. Honestly, I craved that as much as I was terrified of it. Because as much as I feared knowing, at the same time I needed to know. There was a period of time where I went seeking every story of a dying ADSL child that I could find. I wanted to know what the end looked like and his fleet of doctors, who had never encountered another patient with ADSL, couldn't tell me. And sure, doing this would throw me into emotional turmoil for a day or two, but it was also reassuring because now I could appreciate Cyrus's bad days and know - this is not the end. This is just a bad day.

Katelyn - 3 years old

Since being part of the group and being friends with its members I follow so many of these children's stories with avid interest. I am constantly showing pictures and reporting how they are doing to my husband. Doesn't Gabriela look like Cyrus, I ask him. And look at Hamish - he's so happy! See Katelyn's expression - Cyrus does this sometimes too! She has pneumonia again by the way. And Matthew is in the hospital because they can’t control his seizures at all. But Carson is four years seizure free! I honestly didn't even know that was possible with ADSL!

Hamish - 6 years old

He used to always respond with “Who?”, but he’s starting to recognize the names. Either that, or he's just learned that if I mention a kid's name he doesn't recognize that it's probably one of these kids. Sometimes, when the news isn't good, he’ll get silent like he doesn’t know how he feels about it either.

Matthew - 12 years old

And now one of these children seems to be on their last stretch of this journey. His name is William. And I find myself affected far more strongly than I thought I would be. The morning I read the news I couldn't stop crying. And I must confess that I have never before cried for a child I have never met.


But of course, this is so much more personal than that. Because every time I hear or read one of these stories, I feel like I’m seeing my own future.

Hadyn - Lived 14.5 months

And I know that right now, this is so not about me. I just want this mother to know what her group has meant and still means to me. And I want to thank everyone there for being so vulnerable. For sharing your joy and your pain, for sharing the impossible choices you have had to make, for being a role model. I'm amazed at your capacity to express your understanding in so few words. To express your compassion and your love for essentially total strangers.

Sydney - 7 years old

It’s strange to be connected to such a unique group of people from all over the world. And part of me wishes that we didn’t have a reason to know each other - that my child was healthy and that your children were all healthy, but I also cannot put into words how much comfort your presence has brought me even if we do not always talk deeply or often. And so I’m grateful. I'm grateful that my family is going through this during a period of history that has access to this kind of connectivity. That we are not as isolated as maybe we would have been during a different time.

Jude - 5 years old

And more than anything, I want you to know that your sons and daughters - whatever they have to struggle through, whatever they have to ultimately face, whatever they cannot and may never do - they have touched my life in a profound way. Even from half a world away. As I know that they have touched you. 

I wish I could offer you some form of comfort - even just a hug. But words are all I have. Know that I'm thinking of you, your child, and your family. I am amazed by and look up to you. And while I dread the day, I hope that I will be able to live up to the example of grace and strength you have set when the inevitable time comes.

Carson - 5 years old

Gabriela - Almost 3 years old

Carola - 10 years old

You have touched so many lives William.
We love you.