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.