Wednesday, January 20, 2016

Look Who's Talking Now

Bubbles for everyone!
Tiny has a 30% speech delay, so he has a language that is pretty much all his own - we affectionately refer to it as Hamlish. It's a mixture of English, Toddlerese, grunting, gesturing, and repeating syllables. It also often contains a word or two that is a place-holder for what he really means, e.g. down means both up and down. His brain has trouble juggling some opposites, it seems; this isn't unusual for TSC kids, so it's something we've got a therapist for and are working on.

On top of it, Squeaky is only 16mos younger than Tiny, so my Irish twins also speak some amount of cryptophasia at home (also know as "twin speak"). As Squeaky becomes progressively verbal, he's catching up to Tiny's point of delay, making them even more similar to actual twins.

This morning, I was mixing both boys medicinal cocktails (Tiny's seizure meds into milk with ovaltine, and Squeaky's bronchitis antibiotic into a chocolate-vanilla pediasure mixture) in sippy cups, when I heard this exchange:

Tiny: EHYEE. No no, no dana dana danana, no no. (Squeaky, no touching! Danger!)
Squeaky: <incoherent yelling> (Don't tell me what to do!)
Tiny: Mamama no no no danana Ehyee no no DOWN EHYEE DOWN. (Mom said no, Squeaky! Put it down!)

(Now, keep in mind I can't actually SEE through the wall between us, but I can tell they're arguing over either the wall charger wire or the tv cord.)

Squeaky: WANNAWANNAWANNA Waaaaaah! *crash* (But I want to! *gets pushed over by Tiny*)

At this point I intervene, brush Squeaky off and repeat what Tiny was telling him, "No no, we don't touch cords, Squeaky. Danger!"

Tiny puts his hands on his hoops and nods smugly, agreeing, "Danana! NO NO EHYEE. Up! No up no <incoherent garble, grunting and pointing>."

Squeaky frowns at him and gets to his feet, going chest to chest with his big bro ... Which is kind of funny, because it's something like watching a squirrel belly up to a penguin. Squeaky tips his chin up and explodes with a giant burp, followed by a VERY pointed garble that I can only translate into something along the possible lines of, "Don't be a jerk - you're not the boss of me!" And then he turns and stomps off.

Tiny looks contrite a moment, then runs over to give me a big hug like I'm still your favorite, right, Mama?

Monday, January 18, 2016

Living at the Doc's Office

Dr. Tiny prescribes more crayons in your diet.
Living here on the Preserve, we usually have really awesome mild weather.  Our Spring starts out muddy and wet sometime around the end of March, and lasts until about Memorial Day.  June kicks off with a sunny stretch that gets gradually warmer and warmer until summer starts mid-July.  Summer ends right around the end of September and Fall stretches through Christmas. 

And all those seasons are awesome, except perhaps a short, two to three week stretch of hot, hot days in the end of August, where I melt.

Did you notice I didn't mention Winter?  That's because Winter SUCKS.  Here in the PNW, we don't get a gorgeous winter wonderland that others get, or milder sunny days that the warm regions see.  NO.  We get slush, ice, and flooding. 
And from the time school starts until the end of March, it's cold season.  If you can count, that's a whopping SEVEN months.  With two toddlers and an 11yo who may herself not get sick, but brings home EVERY bug (including lice last year) and infects the younger two.

We spend a lot of time (and money) on doctor visits - and I'm not even referring to all the specialist visits we have now for Tiny's TSC, but normal, cough and cold and injury doctor's visits. 

So riddle me this, Batman...when you spend a zillion hours in a toyless doctor's office, going back sometimes twice for the same child and cold after it mutates and hits them again, how do you keep them entertained while waiting for the perpetually-late doctor to appear in the doorway and agree with the Mom-dx of an ear/sinus/chest infection?

Well, let's just say sometimes we get creative.  We steal the pens from the front and let the babies draw on the sanitary paper on the exam bench, grab the (non-watermarked) referral pad and write "prescriptions", build paper cup towers, make a water table out of popsicle sticks, the sink, some cups, and paper tape, or just plain take rides around on the doctor's stool.

Today, Squeaky has bronchitis, and we left the Office with an rx written on a prescription paper that was also colored with purple, green, and red crayon.

Thanks, Tiny.  Nice work!

Thursday, January 14, 2016

Tweenaged Dramasomnia

DQ thinks eleven is hard.  Sixth grade is hard.  Practice is hard.  Sleep is hard.  Everything is hard.

She whips herself up into such a fervor that she stands in the doorway and SOBS instead of laying down, closing her eyes, and at least attempting to relax.  And at 11pm with two toddlers whose eyes will unavoidably snap open at first light, sleep is more precious in my life than chocolate.  And let me tell you, I LOVE chocolate.  And ice cream.

"How do you want us to help you?"  We ask.

"I DON'T KNOW!" She sobs.

"You can't fall asleep standing up," we say.

"I KNOW!"  But she refuses to move out of the doorway.

"Go read a book, play with something quietly, write in your journal until you feel like sleeping."


"So what is it that you want us to do?  Conk you upside the head with a frying pan?" I ask, completely annoyed that she refuses to try and help herself.


"Then what?" I prompt.

She glares at me like she's trying to melt my face off.  Her dad tries really hard to keep from rolling his eyes, sighing as her hollering has now woken Squeaky a second time.

She stomps off to her room and slams the door.  Tiny, who shares a wall with that doorframe, starts shrieking in terror, flying out of his room and desperately racing down the hall to find me.  I scoop him up, my eyes rolling so far into my head I can see my frontal lobe.  DQ whips the door open again, glares at the two of us, and does the angry, ugly crying that often accompanies her tweenaged meltdowns.  It's an act at this point, an attempt to manipulate me into there-there tutting and soothing.  Her cries are definitely put on, lacking the passion of frustration.

After repeating the order to FIVE times, then to take deep breaths until her breath stops shaking THREE times, and telling her that I realize she's anxious about her choir concert tomorrow, but that this isn't helping anyone sleep, her especially...She finally calms down enough.

I wish her goodnight, close the door, and put Tiny back to bed.  Midnight.  What is it about this age that is SO HARD that they can't even see the unreasonableness of their own actions?

Wednesday, January 13, 2016

To Washington

The fear of losing him is inescapable.

They tell you things like, "Everything happens for a reason", and "God only burdens the strong", and "You're a good mom; he doesn't even look sick."  As though I could stop it if I wanted to.

They don't know how it feels in the middle of the night when Tiny starts nodding and shrugging.  When all I can do is hold my baby and cry and whisper, "I'm sorry, Baby, I'm so sorry..." and count the seconds until it's over.  To hold him and stare at the ceiling for the next hour after he's nodded off again, watching the clock as the hand winds itself past the three, past the six, past the nine, and finally, past the twelve, because if he has three seizures in an hour, I have to give him a medication that could cause his breathing to stop... and then call 911 so the EMTs will come.  They -- with their empty platitudes and cliches -- don't understand the meaning of the word "insomnia".

They most certainly don't know what Tuberous Sclerosis is.  I'm a medical student, and I'd never heard of it.  "TSC is a rare genetic disorder categorized by mostly benign masses formed on the soft tissues, primarily the brain, lungs, heart, kidneys and eyes," the doctor told me, empathy radiating outward from his voice like a slow, heavy fog.  Two weeks after the seizures started, a month after his second birthday, that was our diagnosis.  It pained the doctor to give it to me; I could see the hurt behind the glint of his lenses.  I lost the feeling in my fingertips and toes momentarily, the rest of my body buzzing as my mind raced through my family medical history.  "Two thirds of all cases are mutations," he supplemented, seeing where I was going through the mental files.

Well, wasn't that ironic?  I can't win the lottery to save my life, but my kid hits the jackpot before he's even born.  Angry?  Yes.  Scared?  Yes.  So I did the only thing I could do in that situation:  I hugged my son tightly and asked, "What can I do?"  To save him.  To help him.  To keep from crying.  To keep that light from dying out of his eyes.  Medicate.  Suppress.  Test.  Watch.  Be vigilant.  Hope.  He won't be allowed to sleep alone because the seizures come at night.  He may require special education, therapy.  He may not be able to keep up with his little brother in school.  He may not have friends, because he may be different.

I replay that memory over and over.  I tell myself every night as I lay down on my floorbound twin mattress that tonight, there won't be any seizures.  Tonight, the medicine that makes him so grumpy and tired will work.  Tonight, I will hold him, and he will snuggle against me, because we both want the comfort instead of need it.  And tomorrow will be a better day: a seizure-free day.

Everything happens for a reason, they say.  I want to know the reason.  Why?  Why us?  Why him? Why me?
God only burdens the strong, they say.  I'm strong because I have to be.  No one loves my son like I do.
You're a great mom; he doesn't even look sick, they say.  Well, he is, and the powers that be must be cold and calculating to let this happen to someone so amazingly beautiful and innocent and full of promise.

Tonight, as he sleeps next to me, I'll cry, so that I don't cry tomorrow.