March 15, 2011

The Ifs and the I Don't Knows

Originally uploaded by Citizen Rob
Waiting two months to see a neurologist sounds like a long time, even though I'm told that it's really not. Well, it is a long time, but I guess I should say that it's not an unusual wait; it's actually pretty good compared to the wait that many parents and patients endure. Most people end up waiting months, and that's right here in America. I can't tell you how many times I've read conservatives disparaging the Canadian health care system's long waits when they are listing the failures of socialized medicine. As far as I can tell, the big difference between that system and the one we have here in God's Perfect Perfect Country is the fact that we'll get a gigantic bill for our trouble. Well, what are you going to do?

It's frustrating, in part because we're trying to catch a very elusive monster. Schuyler hasn't had consistent issues with this, after all. She had a few "incidents" back in January, and then again two weeks ago (and twice last week since I last wrote about this). This week? Nothing so far. What we'll be hoping for is IF she's having seizures, and we don't know that she is, she'll just happen to have one of them while she has wires connected to her head in about six weeks. If we could have gone to the neurologist's office when she was having these incidents, then we would have a better shot at catching one as it happens. Doing it this way is like finding evidence of some animal in the forest and then returning with a gun two months later, hoping it might come back. And not knowing if it's a rabbit or a bear. Or a Tyrannosaur.

Identifying absence seizures is hard because they are so hard to recognize, and in Schuyler's case, the evidence that she might have had one follows the actual seizure itself, IF she's having them. If if if if if if if. Fucking ifs rule our lives now.

I don't know if she's having seizures. We continue to rule out the other possibilities, such as UTIs and blood sugar issues, but that process of elimination isn't much help. From what I've read, it's not unusual for absence seizures to go unrecognized or unobserved for years. Do you know when some kids discover they're having them? When they start driving. Think about that. Spacing out for a few seconds in class or at home goes unnoticed for years, easily, but imagine your child having one at 70 mph on the freeway. Assuming your kid survives, congratulations! Now you know they're having seizures.

Well, Schuyler's eleven, and she still doesn't ride a bicycle, so that's a fun fear that I can put off for a while. It's good to pace yourself, after all.

When we learned of Schuyler's polymicrogyria almost eight years ago (God, I can't believe it's been that long), this wasn't what we expected. I suspect that's true for a lot of parents. You imagine the Big Event, you imagine that first seizure arriving like a hurricane or an earthquake. You don't think about the possibility that you just might not know, it might take years to discover the truth.

There's a lot I don't know. I don't know if Schuyler is having seizures. I don't know if she's significantly (and permanently) impaired intellectually. Will she ever catch up to her classmates? Will she graduate from high school one day? Will she drive a car and live in an apartment and have a job? Will she date boys and get married? Will she date girls and scandalize her grandparents? When I die, will she cry her tears and then move on with her independent life? Will the monster that holds her back now begin to gently release its grip on her as she gets older, or will it one day crush her in its hands? I don't know. I can't know.

Other parents worry about their neurotypical or otherwise unafflicted children's futures, I get that. But not like this. I wish I knew how to explain to those parents, the ones who try to cheer us up by telling us how they worry about their kids, too, just like us, that no, they don't. I wish I could make them see that the things that worry them, things like good grades or their daughters' first periods or their kids' lives after high school, these things terrify us. Even the usual stuff is hard, the stuff we can see coming. The thing you learn with a kid like Schuyler is that even the boring stuff goes down differently with her. You think you know how it'll play out, but you don't.

Sometimes I feel like the worst thing that happened to Schuyler was simply that she was our first born. After Schuyler, we made the decision not to risk more children, and while that has been a source of some sadness over the years, it was nevertheless exactly the correct choice to make. But if we'd had another child before Schuyler, if she had an older, neurotypical sibling, then at least she wouldn't be as alone as she is. I don't know, though. Maybe it wouldn't be any better. Schuyler is loved by a great many people, including members of her family, but the harsh truth is that the reality of her situation is understood by very very few. Our friends, our co-workers, and both our families want to get it, to get her, but they don't. And really, I don't know that they can.

Because honestly, I don't know that Julie or I do, either, although I know we get closer than anyone else. Some of her teachers have probably gotten close from time to time, too. The hope and the enthusiasm we all felt when we first moved to Plano has been replaced by some grey truths. Schuyler can be difficult to teach. Schuyler can be age-appropriate in some ways and astonishingly delayed in others. A world in which she can attend mainstream classrooms and learn alongside her neurotypical classmates seems more out of reach now than ever before. And she might be having seizures.

Sometimes when I write about Schuyler, I have a point that I'm trying to make. I take my topic and I use my skills as a writer to present it, sculpted and shaped into something that works as an essay, something that might have meaning and value to others. But every now and then, when I feel overwhelmed both by the way things are and the unknown and the unknowable, I just start writing, just let my anxieties flow out without shape or craft. No art, just "fuck".

Sorry, but yeah. Fuck.


Unknown said...

I just love this.

Henry the Blog said...

Can't imagine why you didn't think this wouldn't be a fantastic post. Parents raising children who aren't developing typically need to hear from other parents who also have moments of being sad, pissed off, resentful, confused and winging it, day by day. Thanks!

Erin @

Elizabeth said...

I'm with Henry the Blog -- I've wanted to craft a post that would accuse all the dear people I know (not in my virtual world) who literally do NOTHING to help me and my daughter -- I've felt resentful and weary and all those things but just too timid to write it. I know, too, though, like you that it's just too much for most people.

I wish that I could help you in some way to get in to see a neurologist. I do have many connections in the neurology world through the work I do with NICHQ and the Epilepsy Foundation. If you think I might be able to help, please contact me.

knittingwoman said...

You are so right. Parents of NT kids do NOT understand what it is like to worry about your child's future not knowing if they will ever be able to live independently. I have 4 NT kids that are older than my dd. At the moment, ds #2 who is 23 will become her guardian. My daughter is 14 far too close to that elusive supposedly adulthood that certainly isn't going to arrive at 18 or probably even 21 for her.

Domestic Goddess said...

Sigh. And you didn't think this was a good post.

May I say "fuck" with you?


there. That feels better!

daisyjo21 said...

I am so sorry for previously being one of those parents of a Neurotypical child who would try to find comfort in the fact that some of Schuyler's issues seemed so much like Jessica's, so it wasn't all because of her monster, right?

Now that Jessica is NOT Neurotypical, I know that you are 100% correct. Parents of Neurotypcial children just can't understand. We/They just can't.

Even if my thoughts were unvoiced, I was guilty of the thinking you present here and I am sorry.

Suzanne said...

A couple of great points in this post. First, how people with "typical" kids just don't get it about the worry. It's not even close. This worry is more like terror---when I think about Janey as an adult, or God forbid, when my husband and I die, it's terror I feel. Next, that no-one really gets it except the parents. I know Janey's teachers and my friends and extended family all love her, but they are tired out being with her for an hour. They have NO IDEA what 24/7 is like. NO IDEA. Your post was great. Sometimes, you need to rant and just say what comes to mind.

Becky Burdine said...

I heard this on the radio today, and it is really sticking with me: "You're only as well as your sickest child." When my daughter is doing ok, I am ok. But when she isn't, or when I don't know if she is, life is FUBAR in so many ways.

But that's why parents of NT kids don't get it. And god help me I don't want them to ever have to. But how can you tap into this fear/anger/anxiety we deal with on a daily basis if you child is healthy? I didn't have a clue what it was like to deal with special needs until I had to. I don't think reading blogs or books would ever have helped me really understand, even though I would have thought that I did. But I do appreciate people trying to understand.

The absence thing just sucks. I agree with Domestic Goddess and I hope that I join you in your curse.

A lot of kids are also diagnosed because they stop talking mid thought, and then just pick up their converstaion like nothing happened a few moments later. Unfortuantely, not something you or I have the ability to use as an indicator. 8(

Julia Roberts said...

Yeah. No one can truly know even though they want to. I think about my kids' future happiness and living situation every single day. While I'm doing that I remember that they face issues with living an average life span. I work hard to not let those feelings permeate our lives, but it always looms.

Those feelings all suck. Somehow I'm able to experience pure joy and sadness in equal parts simultaneously.

I was trying to say I hear you and got sidetracked.

Marc said...

Shure, we don't have to pay for medical care in Canada, we just have to let the govornment colect 400-500 billion dolars in tax money for our free medical care.

Then wait 5 hours to see a doctor about an ingrown toenail.



Corinn said...

Sometimes, all there is to say is variations on "THIS SUCKS". Because it does, beyond the telling.

And maybe your wait to see a neurologist isn't all that bad compared to others', but something is going on with your little girl and it isn't good news. You need to know everything there is to know about it, and you need to know YESTERDAY.

C said...

Big breath... A lovely woman stopped me at church last week ans asked me how we're all doin'. I smiled and told her that I'm tired (heh, heh), but what're ya gonna do? She replied, "Well, yeah, that's such a big part of parenting!" Heh, heh.

Yeah. I was tired with my kid who had colic and let me sleep three hours a night. But this!? This is something completely different. There's no let up - always something else that will need attending to, and it will be the stuff) of NT parents' nightmares.

I was ticked when Q needed to start benzodiazepines for sleep. Now I'm just relieved that he doesn't need ACTH. If he needed ACTH, I'd be relieved that he's fine (so far) without a g-tube. And if it was a g-tube, I'd be relieved to be skipping the vent. And so on. This version of reality looks less and less like parenting (more or less) NT kids.

Thanks for another great post, Rob. Wish I had something meaningful to offer as you guys wait for the neuro and EEG.

Robert Hudson said...

It's probably worth mentioning that there are lots of parents of kids who are neurotypical but who have chronic disorders who have similar worries about the future. I don't think anyone is saying that only families of kids with neurological disorders worry about their kids' futures, but I've already gotten one complaint so I thought I'd just mention that here.

Rebecca said...

Of all the things we deal with in the world of Rett Syndrome, seizures are the scariest...A thought though on the pattern that you are seeing...If it is a couple within the same week, once a month, there is a chance that at the age of 11, it could be hormonal related. I know some girls who are at a higher risk for seizures, or do have them, they can pick up around that time of the month...Maybe a sign of something to come? (and as a parent of a girl with a neurogical disorder, that might actually be scarier...I know I dread that time coming.)

Erin said...

I agree that parents of neurotypical children have a lot to worry about as well but its just so much more different. In a way they will never understand. I recently got into a pretty decent argument with my sister about her having a "rough life" also because shes a single mom. So I should quit "throwing my daughters disabilities in her face." Its ridiculous, the accusations that come with being a parent to a disabled child. You know, a lot of times after people have asked how my daughter is doing I almost get the feeling that they think I'm trying to play a victim. Especially when we are talking about new challenges she is facing that we are unsure about. Most times I just want to look at them and just say, "Were doing the best we can with the hand shes been dealt but holy shit, its beyond frustrating and heart breaking watching her struggle."

Holly said...

I agree that NT parents worry. That's a parent's job, to worry.

My worry is that of a life threatening condition. My worry is about having a second child as well. My worry is about who will take care of our daughter if we die. My worry is life or death. Daily.

My worry is not what college my kid will get into, what job she will have when grown, how many children she will have, etc. It's just different.

I had to move our Neurology appointment because my doubling booking issues. It moved the appointment out 3 more months.

Hopefully your waiting game is uneventful.

mooserbeans said...

Sometimes Fuck just says it all. You are right this sucks and there is no way around it. I can't imagine your worry, especially about the future. I think your blog and book needs to be required reading for anyone who works with kids with special needs. Your honesty is as close as they can get to walking in the shoes of a parent with special needs child. You have absolutely opened my eyes.

Amanda Jaksha said...

Seizures aren't the part I hate, it's the lack of any type of control in regards to the condition. If it helps there are many more 'kind' drugs on the market since my little one started taking them just 5 years ago. Good luck, the EEG isn't as bad as it seems.

Meg said...

I have absence seizures. For me, they aren't too bad and I choose not to medicate them. My son has seizures (he has had grand mal and smaller ones) and bipolar disorder and he takes Depakote. It helps. The meds for seizure control aren't too bad. And I completely understand your worries about your child's future. I have them too about my own child.

Unknown said...

Ben's PMG was diagnosed because he was having seizures. They also were not the big scary kind, but rather infantile spasms or head drop seizures. We are fortunate for two things. He was diagnosed within a week after we noticed them and his PMG is focal unilateral. After just four months of living with this new reality, I can say that so much is different than it was for our NT daughter.

Every milestone he achieves is cause for celebration and relief. Everything that appears to lag is a cause for anxiety. Will he have complete speech ability? Will he loose part of his sight due to the anti-convulsant meds we have to give him every night? Will he outgrow the IS or will they morph into the intractable scary seizures that cause irreparable brain damage.

Rob, your words have been an inspirational roadmap to me, my husband and Ben's early intervention team, but this is a club to which I never wanted to belong. Thanks for speaking the truth and giving me license to do the same.

Anonymous said...

It's funny how another parent's attempt to find common ground, by telling me "I know what you're going through," ends up feeling like an assault — just one more piece of evidence of how little they understand. It's done out of ignorance, not hostility; but it's hard to get past my resentment that some people have the privilege of remaining ignorant.

I always feel like a schmuck when I interpret other people's well-meaning gestures as acts of aggression. It sounds like such a good idea in theory, right? Looking at what you have in common, offering support, building community? But instead, I'm left singing "your worries ain't like mine," while fighting back the urge to tell them to fuck off.

The flip side is I'm so paranoid about how my own offers of support or solidarity might be interpreted that I'm often too self-conscious to even make the gesture. And that seems like the saddest part.

Somewhere between claiming you understand someone else's struggle and turning away because you know you don't, there should be a middle road. Something like, "That sounds really rough. I wish you the best."

Loves Pickles said...

I'm reminded of the nebulous "one day at a time" cliche. You just cannot plan or know with a condition as precarious as that, and as humans we're so used to getting things neatly in order with our need to organize and make everything fit. Your life is simply going to have exist in the realm of organized chaos. You can schedule the appts, but cannot know the outcome, or if you'll just come home with more elusive answers. I think the only thing for it is FUCK. And for that, I send you and your family virtual hugs because...well, FUCK. Anyone who tries to sugar coat it doesn't know what the hell they're talking about.

BethRD said...

Yeah. I worry about my healthy child. I am intermittently in the grip of terror about my child with problems, sweaty-palmed can't-breathe terror. It's really just not the same.

Jenn Lynn said...

I agree with domestic goddess!!!!
New to the blog thing, trying my own hand -- not quite as skilled a writer as you! Excellent.
Jenn Lynn

LoveItHere said...

I think my daughter's absence seizures went on for a year because I had never heard of them. One day we were watching a home video at a point where the focus was on here, and it looked strange. There was another one a few minutes later. I don't know why I didn't notice it when I was taking the stupid video! Anyway, we showed it to the neuro (3 months wait but beats the 12 mos wait my friend in Canada has) and sure enough...absence seizures.

We were also warned that puberty can start up seizures, so we are bracing ourselves for that. Bad enough she's going to have PMS like the rest of the girls in the family, but seizures too? :(

I hope it all works out well with your neuro. It's like the seizures KNOW someone is looking at the brain, and they hide out for a day. Grrrr...

Unknown said...

I found your blog a few months ago and I can't tell you how much your writing helps me, challenges me and gives me the comfort of knowing I am not alone in this struggle. I chose this blog this evening because of the fear that has been seemingly overwhelming at times and hard to understand. I couldn't identify what the fear was truly about until I read this. My daughter is 2 and she too has "special needs". Perhaps that is all I need to say. I often wonder if parent of typical children worry about the things I worry about. I too have been assured by well meaning friends and family that they have the same fears. I guess it is a breath of fresh air for me to hear the truth. The truth we all know but for some reason pretend our realities are the same. I am tired of all the PC bullshit. This hurts. This really really hurts and often leaves me paralyzed with fear. I am sick of nodding and smiling as I am patronized however unintentional and well meaning the message is. I just want to tell everyone that it is okay to say what you are really thinking! Chances are I have thought it or am thinking it too. So thank you for being that person for me.