Big monsters are bad.
God knows we've met plenty of kids fighting those big monsters. Kids in wheelchairs. Kids with CP whose bodies betray them when they attempt the simplest movements. Kids with autism for whom the world in which they live bears only a passing resemblance to the one that the rest of us occupy. Kids fighting battles with their bodies just to be able to eat, or to live without crippling infections. We've met kids with big, daunting, obvious monsters, and in her own way, trying to communicate the simplest concepts and so often finding frustration, Schuyler has lived with a sizable monster herself.
When she received her diagnosis five and a half years ago, we met polymicrogyria, her big monster. That day, we learned to fear the even bigger one that might be waiting for her. I think we knew on some instinctual level that Schuyler was not mentally retarded, so grand mal seizures were the ugliest monster we feared. There was a ninety percent chance they would develop, we were told, and in rare cases (but how rare can they be, really, when they are a subset of but a thousand cases in the world), those seizures could be lethal monsters.
Big monsters are bad, that's for certain. But the little monsters, the ones so subtle that you're not even sure they're there, they bring their own special anxiety.
It's been a strange week. Nothing really changed, just the falling together of enough puzzle pieces from different sources and perspectives to reveal what seem likely to be tiny monster footprints. Looking back, we realized that if Schuyler really has been having absence seizures, it probably began this summer. But it's hard to say for sure. It's hard to say whether she's having short spells at school where she loses her focus because she's having tiny seizures, or just because her father's disinterest in school turned out to be genetic. It's hard to say with absolute certainty that Schuyler's little fade-outs at home with us are a product of tiny electrical storms in her head, or just the inevitability of her growing boredom where her parents are concerned.
Julie and I have been watching her all week. Just watching, waiting for a glimpse of her tiny maybe-monster. Schuyler was home sick for a couple of days, and Julie found herself unable to stop staring, waiting. Schuyler noticed, too. "What, Mama?" she said irritably. If what I'm reading and hearing about absence seizures is true, she has no idea she's having them. IF she's having them.
Tiny maybe-monsters aren't much fun. They are like the world's most challenging Whack-A-Mole game, where not only can you not hit them, but they move so quickly that you're not even sure they are there.
Tomorrow we see a doctor. Not a specialist, not yet, but just getting Schuyler started with a new general practitioner. Mine, actually. She knows me, and she's read the book and has at least a basic understanding of Schuyler's bigger monster, which is more than any other doctor of hers has ever had at the first appointment. Most of all, I trust her, completely. From there we'll get a neurology referral, and then start down this road.
It might be that there is no tiny monster, and that Schuyler continues to dwell in that sweet spot, the hundred or so polymicrogyrians of the world who live free of seizures. I live between two mental states right now, the one that clings to that ten percent hope and then the one that's ready to take on this next phase. More than anything else right now, we simply want to know which path we're taking. It's been a long time since we were in this answer-seeking limbo. I'd forgotten how much I hate it.
Yesterday I was driving with Schuyler, and I was listening to an opera because I am just that much fun of a father. The opera was in English, and the characters were mentioning "war" frequently. (Again, fun dad.) After asking me what the music was about, Schuyler hit me with one of those Big Questions that kids drop on us like, well, bombs.
"Daddy," she asked, "what is war?"
I gave her the best answer I could think of. I left out the part where she's fighting a war and doesn't even know it.
22 comments:
About war: One of my troops keeps a blog on his time in my (former) platoon, and has written about how it continues to impact his life after leaving the Army.
http://armyofdude.blogspot.com/
My best wishes go with you and your family, Rob.
We're thinking about you, here in Los Angeles, hoping that you won't have to fight off or even entertain more monsters.
Thinking about you and Schuyler's monster quite often. My three-year old granddaughter, who has Prader-Willi, has a sword hanging over her also. The constant, never-stopping hunger that people like her will mostly likely experience, has not started with her yet. We, too, are hoping against hope that she will be one of the very, very few that will be able to avoid that. PW occurs in only one in 15,000 birth, so it is not as rare as Schuyler's monster, but still rare. Good thing I am an atheist, otherwise I'd be awfully mad at that horrible god that did this to her.
Thinking about Schuyler - and you and Julie as well. Hoping for that 10-percent.
I just don't know what else to say.
Is that a Beastlie? I LOVE Beastlies! I want them on my wedding cake.
On a more serious note, I hope you get some answers soon. The state of limbo is never fun. I'm glad that Schuyler doesn't realize what's going on, and I hope she feels better from being sick soon.
I'm so very sorry that you're having to go through this. You, Julie and Schuyler are in my thoughts.
Why does life so often keep one waiting interminably - for a diagnosis; final decision on type of surgery to have (my present dilemma); waiting in line, etc. I guess its time to count your blessings- Schuyler is a beautiful healthy little girl ( I believe that if you are sick you have an infection, a cold, the flu - epilepsy is ultimately something Schuyler can live and thrive with,and live as safely as possible; even grand mal can be controlled; your marriage is stronger than ever it seems; you are both able to fight for your daughter's best interest and post a sentry for the monsters and try to keep them in their boundaries without limiting Schuyler's ability to live her life.
She is blessed to have you as parents, and however boring she may think you are she knows that she can rely on the two of you. Sometimes events *&#*,but you are an army of 3. God Bless.
Barbara
Sick. Familiar. Feeling.
Well said.
-Kathleen, Becca's mom
Good luck tomorrow.
I've been lurking on your blog but forgot to tell you that I wrote a bit about it on my own. Hope you don't mind --
The Butter Battle Book is already too young for Schuyler, but might be a fun read anyway as a way of conveying anti-war message.
Rob, I've recently read your book for the second time and now look for your blog updates. Thank you for your heartbreaking generosity.
I had a dream about your family last night. It was a good one, albeit odd that you knew our next door neighbors out here in Ohio. I was thrilled to see you three, however, and Schuyler was happy and talking in her way, but we could all understand her. By the time you left the whole neighborhood was standing around our house chanting her name and cheering. I hope it's a good omen, and our whole family is thinking of yours, and sending lots of love your way.
I know a little boy who has absence seizures, byproducts of a neurological condition different from Schuyler's.
Your description of the subtle changes in facial expression, the scattered focus, is right on the money. I don't know if this would be helpful to you, (since the seizures are unpredictable and don't exactly respond to a "Hey, knock it off" command). But I learned through day-to-day contact with this child's particular monster that there are other concurrent "tells" -- tiny twitches in his extremities, sometimes affecting just one hand or foot. Once I began to notice those, I understood what was going on to make an otherwise chatty little guy suddenly zone out.
If it is any consolation at all, I had absence seizures as a (nine-year-old) child, although they were called petit mal seizures then, and for the person who is having them, they don't feel like anything. It was simply like turning off for a few moments at a time. The only thing that ever scared me about them was the look on my parents' or teachers' faces when I came back. I don't want to minimize your fear, but I can tell you it is much worse for you than for Schuyler. I would freak out if I saw the seizures in my daughter now, even knowing first hand what they are like.
Hi Rob, It's been awhile...I check in from time to time though. I'm sorry to hear about Schuyler's episodes. It is a bad deja vu for you and Julie...but you will endure.
Chris' seizures started at age 10, and it took us 2 years to get diagnosed. (we had a loser neurologist) We were told his then subtle episodes were 'vertigo'. If I knew then what I know now....
This is the time to 'catch it' if you can....her brain is about to go through so much growth, hormonal 'stuff' etc. as Schuyler approaches the magical 'pre-puberty' stage....and of course into adolescence.
No matter what kind of seizures they are...it is no small monster. If given the choice...I would ask the genie in the bottle to take away the epilepsy, and leave Chris as he 'is' - no words and all. At first we were 'happy' that he could take a pill for something, instead of saying 'it is what it is'. But in reality, for us, the seizure monster has been way WAY more difficult to fight.
Hang tough...
Cyndi K. (Chris' Mom)
I must say You, Julie and Schuyler have very strong heart, I wish you all the happiness in the world!
Another comment to add to C's-
As a child I also suffered from absence seizures. The symptoms are as described. An additional thing that I can remember as a child is that I would feel like I missed parts of conversations. You may want to ask Schuyler if she ever notices that. That was a first real sign to me that I'd had a seizure.
I'm so sorry that Schuyler's disease may be progressing. She is in my thoughts and prayers.
I wanted to suggest that you take some videos. Videos of fun stuff, or just your daughter doing school work. It's easier to catch when you can rewind a tape and review it.
When my daughter was a baby and a young toddler she had infantile spasms. A different beast, but similar in that it was so subtle. Her father and I would notice her eyes look up to one side, and sometimes her neck would twist in that direction. I finally caught it on tape and was able to show her pediatrician.
Happily for us she outgrew them with no ill effects.
Best wishes to you and your daughter.
Thinking of you and your family and hoping for the best.
I'll keep a good thought for you guys and hope that Schuyler just inherited your disinterest-in-school gene. I've been in that "waiting for the other shoe to drop" place before, and it's not a good place to be. I want to be encouraging, but I'm just too tired of fighting my son's monster right now. All I can say is, good luck and take care of your beautiful daughter and yourself.
Post a Comment