I don't even know what to title this one...

She's so sick.

She hasn't wet a diaper in 8 hours.

She's only taken in about 2 ounces of water today, without it immediately coming back up.

She slept from 3-7. I roused her a little to take her temperature, and she was having another episode when she woke up. She is still having another episode, right now. Another. The third in 5 days.

Part of the reason I write this blog is to process...to frame things in a positive light, even things that are not always easy. But this, this is simply exhausting and sad. I don't really know what else I can say about it.

****

I stepped away from the computer right there, to tend to KayTar. Since then, she's come out of the episode. It was about an hour and a half in duration, from the time she woke up to the time it ended. Her fever broke, too, maybe that was the key. I don't know. Guessing is simply that.

I've gotten her to take some fluids. A little.

Still no wet diapers. 9 hours.

I'm still in limbo, watchfully waiting to see if she'll need to go in for IV fluids tonight. Still exhausted. Still unable to find the words to convey exactly what any of this feels like or maybe just too tired to find the right words. Sad, heavy, exhausting...but more and less all at the same time. My girl and my heart inextricably tied tightly together, both tired, sick, and aching tonight.



It is past midnight, still no wet diapers...but she took in enough fluid to buy us a reprieve until morning. We can stay home, snug in our own beds tonight.

Handwritten

Alternately titled, "Summary of My Week"

Saturday



Tuesday, Wednesday





Scheduled for Friday





Not nearly as beautiful as Flutter's or Chani's, but handwriting nonetheless. A peek into my handy dandy notebook.

Jinxed again.

This morning I woke KayTar up, got her dressed, and proceeded to brush her hair.

I sprayed it with water, as I do everyday, to loosen the curly mop it becomes in the night. I brushed it. I put in her butterfly. I put on her glasses.

She said, "My eyes feel sick." and pulled her glasses off. Or maybe, she pulled her glasses off and said, "My eyes feel sick." Either way, she wasn't opening her eyes.

I said, "KayTar, can you open your eyes?" It looked like an episode.

"KayTar, do you need to go to bed?" Yes.

She mumbled, "I'm all shaking."

I tried talking to her, asking her a few questions, gauge what was happening. She didn't respond. I left her to rest in her bed.

Maybe ten minutes later, I was calling Josh to let him know and I heard her, "I feel all better!" and went to check on her. She sat up. Her eyes were open. I asked her what happened and she told me, "You sprayed water in my face. My eyes feel sick. I shaking. Now I'm feel better."

Later she said, "I feeled spinny sick. Twirl around, twirl around. I'm feel better now!"

What happened? Was it an episode? A freakishly short episode on the heels of another? At the very least it was a severe reaction to something innocuous, something she experiences daily. I spray and brush her hair daily. When we leave the squirt bottle within her reach, we find her sopping wet, as she can't resist spraying herself in the face. When we swim, she begs to be splashed in the face (BubTar is all too happy to oblige). It is something she typically likes and seeks out regularly. She's never reacted negatively to it. To my knowledge, I didn't even squirt her in the face, what she felt might have just been cast off, peripheral spray...but WHAT A REACTION.

It reminds me of this, specifically this portion:

Yesterday, we had something else happen. KayTar was sitting with her daddy on the couch, and she tried to sign "Daddy", but she poked herself in the eye instead. She didn't do it very hard, in fact I can show you how hard it was.

Take your hand (whichever you would like) hold it in front of your face, thumb pointing towards your face, fingers fanned out, and tap it on your forehead. There! You signed "dad". Good for you!

Well, that is what she did, only she missed her forehead and caught her eye. She fussed a bit, and kept her eyes closed for a few seconds. When she reopened them, the eye she had poked was pointing inward to her nose and drifting. Her other eye was properly aligned. She blinked a few times, but it continued to point inward and move slightly. It lasted 1-2 minutes, and then she started gagging and almost vomited. We ran her to the bathroom, and then suddenly everything went back to normal. It was very strange, but strange doesn't necessarily mean anything...it is KayTar we are talking about.

The reactions themselves are entirely separate and unique, but the intensity of the reaction to something so innocuous is similar.

It was just so strange. Unexpected. Bizarre. It has left me scratching my head in puzzlement. Did she just have an episode? If not, then what in the world was it? Why did she describe it the same? React the same? If so, then why in the world was it so short, triggered by something so normal? Why was it so close to the last one?

She's fine now, coloring at the table while I write this. I'm keeping her home from camp today. If a little water caused THAT, we're going to play it safe, thankyouverymuch.

This is what I get for listing all those anomalies yesterday, isn't it? Another anomaly. When will I learn?

Lucky, still

Rarely, if ever, has she gone through an episode that left us feeling lucky. But this time? We do. Completely.

It was painless. It was short. She should have had 3, at least, in the time it took her to have this one minor episode. It was a gift in so many ways.

In between episodes, I'm waiting, watching, always. I don't even realize it at times, but I am. We expect it to be around the next corner. Hidden in the next moment, just out of sight. While on vacation, we were putting her in her swimsuit and she stopped. Her eyes closed. And our hearts stopped.

Is she?

I don't know.

She's not moving.

Her eyes are closed.

Maybe?

I think so...

No. She's okay.

KayTar, are you okay? Can you answer me? What's wrong?

Turns out the air from the overhead fan was bothering her eyes. That's all. Normal, innocuous, but we thought, "Here it is." We always think that. We always wait for it.

So now the clocks are reset. She can go to camp today without my heart stopping each time the phone rings. Without me explaining the episodes AGAIN to the nurse, to her teacher. Without my heart begging me to keep her home, safe, where she can be cared for if it happens. When it happens.

As for outgrowing them? I hope. Man, do I ever hope. She's had 31 episodes in her 41 months of life. 6 months, 14 months, and then at about 18 months they really started coming fast and frequent. Every 2 weeks, in fact. They started at roughly 45 minutes, every two weeks. Like clockwork. Terrible, terrible clockwork.

It isn't an exact science, but there are trends. As time has progressed, they have generally grown longer in duration, with a few exceptions. From 45 minutes up to 11 hours last go round. Overall, the time between has bounced back and forth, but the long stretches have become longer. Her larger breaks tend to be followed with a more "normal" spaced break. 69 days, followed by 30 days. 73 days followed by 39 days. 90 days followed by....who knows. We've had some surprises. 4 episodes in a two week period. One episode that seemed to last minutes rather than hours. She's had episodes on two consecutive days. She's had easy ones and hard ones. They started with the predominate symptom being a head tilt, now there is no head tilt. Sometimes there is vomiting. Sometimes pain. Sometimes light sensitivity. Sometimes sensitivity to motion. Always, always a loss of conscious awareness, and a decrease or cessation of responsiveness.

I could discuss these at length, study the similarities, note the differences. It can never be summed up as neatly as I'd like. It is messy and mysterious, it gives us just enough information to feel that we have some control, that we know something of it...but the threat of the unknown is always present, in our minds, in our hearts, in our memories. It lurks just out of sight, the monster that snatches our girl away, takes her to a place of discomfort, illness, pain. A place where we don't have any power at all. We just silently hope that each time it won't be too bad, too long, too hard for her. And so while we wished she hadn't had one at all, she did and we still feel lucky, because at least this time, it was not too bad, too long, or too hard for her. Now our clocks are reset, granting us freedom for a time, giving us space to enjoy our lives without feeling the monster breathing on our necks or hearing its growl just around the next bend in the road. It is still out there, I know, but this time she was lucky. This time she escaped largely unscathed and sometimes, that just has to be enough.

95 Days. THE END.

It was a good run, wasn't it?

I spoke at our state Capitol.

We got to go to NYC.

I took an entire math course.

I was able to spend the night in the Atlanta airport.

Family vacation.

My trip to BlogHer.

95 days of blissful, uneventful normalcy. Okay, normal people don't count the days while waiting for the ephemeral monster that is an episode to jump out and attack their child, but still...the closest WE get to normalcy.

This has been some week. Monday was fairly uneventful, just an eye appointment for KayTar. Tuesday, the air conditioner dude worked on our system and gallons of water ended up raining into our bedroom, causing the need for pipe work and new sheetrock. Wednesday, BubTar had to have stitches and we spent 6 hours in the ER. Thursday, our power went out because of weather. Friday, our power went out, AGAIN, because of a blown transformer. Today, we were about to leave for my little sister in law's birthday party and BAM--episode.

She had walked into her room and Josh followed after her, about to wrangle her into her shoes, and she was grasping the door frame, eyes closed. He said, "KayTar?" And she said, "I'm all spinny." And he said, "Kyla, she's having one."

Damn, damn, damn.

As I was driving home from the store today I thought, it has been so nice not living our lives around these episodes...maybe she really is outgrowing them. One hour later...Hello Optimism, here is the episode you ordered!

My boys went to the party without us. It will give BubTar something to do other than staying VERY VERY QUIET for his sister. KayTar is in her bed, drifting in and out of consciousness, alternating between writhing fitfulness and eerie stillness, sometimes responding, sometimes not. That's always the kicker for me...watching my wee girl slip away from me, even as I hold her tight in my arms. My bright, vibrant star suddenly left without the sheen of her twinkling magic.

ETA: Over! I can't remember the last time she had one this short! 2.5 hours. No pain, no vomiting, no light sensitivity. When she woke up, she told me, "I feel all better. I was shaking!" She asked for ice for her head when she woke up, maybe a residual headache, but she seems to be just fine now. We're watching her closely, but it looks like she's going to be a-okay.

Evidently, I've been feeling reflective lately.

While at BlogHer, this post came up a few times in conversation, I mentioned more than once that I STILL cannot read it. So, what did I do late last night? I made myself read it. I squirmed and my insides twisted in on themselves, but I read it. The whole thing. And then I got to the comments and had to click away. All of your beautiful, hopeful, kind words, words I read over and over in the days following that post, are too beautiful, hopeful, and kind for me to contemplate in hindsight. One day I'll read them again, I know, thankful for the hearts that beat right alongside my own, because truly, I am so very thankful for every last word we've traded back and forth in these spaces for nearly two years now.

That post, and subsequently this one mark a fairly important milestone in this journey of ours. Those moments mark the point at which I stopped actively looking for an answer. (As an aside, I never realized how far apart those two posts are, in my memory they happened almost back to back; memory is a funny thing) From the moment I read about that condition, I knew it wasn't a logical fit for KayTar, but it didn't matter. It was an answer and it was within reach. The validity of it didn't matter to me. The ANSWER was what we were looking for. The ANSWER was the reason for multiple MRI's and CT's and EEG's...for LP's and ABR's and chromosome microarrays. The ANSWER was what we dreamed about. And we were ready to accept it in whatever form it came to us, regardless of the reasons it didn't quite fit our girl. We wanted it. I wanted it. The reason I still have trouble reading that post is that I don't know if I've ever felt that level of mindblowing excitement in any other capacity. It oozes a sort of blind hopefulness that is unusual for me. I'm hopeful, yes, but factual. I like to hedge my bets in sure things and remain cautiously optimistic for those things that are unsure. With an answer in sight, I completely lost my objectivity. I wanted an answer so badly that it surpassed logic and ripped my firmly planted feet right off the ground. The force with which I plummeted back towards earth was jarring at best, shattering at worst. It was not an experience I'd like to have more than once, thankyouverymuch.

It wasn't about the diagnosis at all, it was about the immediate stock I put in it, the value that I placed on it...and the realization that I had lost perspective about why it was important in the first place. And since that moment, that crash landing back into the land of logic, the siren call of the elusive answer has lost its appeal. I still think about it, of course I do. But I no longer to expect to find it, which is a significant difference. KayTar is KayTar. She just is. She has chronic constipation and asthma and sensory problems and a feeding disorder and a sprinkling of tiny brain lesions and those damn episodes (but, ahem, not for 93 days now) and gross motor delays and an ataxic gait and hypermobile joints and low muscle tone and wonky balance and periodic light sensitivity and unilateral hearing loss and she's gone from having speech delays to reading and speaking fluently and picking up new languages at the drop of a hat. She is who she is, she has certain challenges and certain gifts and we may never know the catalyst for any of it. We may never have a complete picture that allows us to imagine what her future holds. And I think that's okay. Understanding the why has become so much less important than getting to knowing the who. She may never be someone who fits nicely into a diagnostic box. She might never be a totally typical kid. Or she maybe she will be. But she, our girl, lets us know what we need to know, when we need to know it. This journey that has started out as ours, ultimately, will become the journey that is hers alone. As long as she knows where she's headed, I'm just happy to be along for the ride. It sure has been wild so far.

What are the odds on this one?

Two nights ago, we came in from dinner and I turned on the living room light. The lightbulb EXPLODED. Really, it was a BAM! FLASH! sort of explosion. So I took the sand-covered children (one of which, KAYTAR, decided that it wasn't fair that we don't have snow in Texas and invented SAND ANGELS, which is every bit as messy as you'd think) into the bathroom to prep for bath time, while Josh cleaned up the shards of glass that had rained down in the living room. After their bath, and subsequent building of a small island out of the sand we found in KayTar's hair, life went on it's merry way.

Then yesterday afternoon, BubTar was playing with the kitten and crouched down to look at her and lost his balance and fell over. He made this small noise and I looked over at him, now standing, and saw blood already pooling on his foot. He was very confused and the "OMG! BLOOD!" tears were pooling in his eyes. I swept him off to the bathroom and cleaned him up with water ("It's just water! I promise! It won't hurt!!") and found a rather nasty, albeit small, laceration. Every time I released pressure, it started to bleed at a pretty good pace, so I asked him to hold pressure on it, so I could find whatever did this. I found it pretty easily. It was not exactly a small piece of glass. I obviously was thinking like a mom and not a blogger, as I forgot to take a photo of the menacing shard.



It can from the inner portion, the sturdy, yet curvy glass that holds the filament. It sliced in and out of his shin without so much as cracking. I picked it up and moved KayTar into our glass-free bedroom and continued to look after his wound. I could see what looked to be subcutaneous tissue greeting us with a bubbly hello from inside the cut and told him he might need glue or stitches. Then I showed him my own scars (knee, age 5, 5 stitches. chin, age 7, 3 stitches. chin again, age 9, 10 stitches) and told him it wasn't such a big deal. My mom, who was already in route to pick him up for an afternoon of swimming, agreed that it looked like stitches were in order, so she took KayTar to her house and off we went to the ER.

It was so strange being at the hospital with him. This is the same ER that KayTar has visited 6 times, been inpatient in twice, and sees a handful of her specialists in the various clinics. I've logged quite a few hours there. But being there with KayTar, well, it isn't exactly low key. Even when she went in for dermabonding, it was not a laid back experience. BubTar had questions, of course, but they were easily answered and for the most part, we sat watching the TV together and chatting. There were zero tears (ZERO TEARS!) and scarcely even a whimper through the entire procedure. He did really well. The hospital staff was great! They sent someone from child life in with video games for distraction and they talked him through every bit of it, "Okay now the doctor is putting cold water on you. This is the part that you might feel, the medicine can be hot. Now she's wiping you with a towel." He was informed of every small movement, every action he might feel or worry about. He, of course, was in video game heaven, but I appreciated the level of information they were providing him with. We have a hospital much closer to our home, but I drove an extra 30 minutes or so because of the level of care they provide. Kids are their specialty and I've never been disappointed with the care my children receive there.

While we were at the hospital, he told me a few things I found VERY entertaining.

He was looking around the room and he said, "Mom, I think this used to be a house." And I said, "No, I'm sure it has always been a hospital. They build it just to be a hospital." And he said, "But look at that floor (laminate faux wood). That floor looks like it should be in a living room. I think this was once someone's living room." I explained that they try and give off a homey vibe to make you feel relaxed and he shrugged as if to say, "I guess that could be ONE explanation. Or it could be someone's living room."

When the nurse came in she said his full name (let's say BubTaroni* for blog purposes) which can be shortened two different ways, and then asked if he liked to go by (the equivalent of) Bub or BubTar. We ALWAYS call him BubTar, but he said, "Uhm, Bub!" which surprised me! Evidently first grade it a good time to try out a manlier name. Plus, I think he had a little crush on the nurse. Heh.

While they were numbing his leg, he was confused by their explanation (putting your skin to sleep) so I told him it wasn't really asleep, the medicine just kept his nerves from talking to his brain, so his brain wouldn't know if something hurt. After he was done, he told me "Are there still needles in my leg?! Because once my nerves start talking, I think they'll be SCREAMING if there is needles in there!"

So, that's the story. 1 piece of glass, lots of blood, 2 stitches, 6 hours of our lives, and 1 celebratory meal at McDonald's for the brave boy. Oh, and also? THANK GOD FOR INSURANCE.

* You would be astounded at the number of people who have read the blog and thought that the children's REAL names are KayTar and BubTar. If you've ever wondered, let me clear up that question right now. NO! I would not name my children KayTar and BubTar and I'm a little sad that the modern naming situation as declined so much as to give these pseudonyms any sort of credibility as real names. One -Tar name would be bad enough, but TWO? No, no, no. But possibly still preferable to names like Moon Unit and Kal'el. Possibly.

Wordless Wednesday: 2 stitches and six hours later...

A little art show

Last night KayTar was sitting at the kitchen table with a pen and a notepad I brought
home from BlogHer. She called me over and said, "Look! I drew Spindella!" (a character from Sunny Patch, if you are unfamiliar) and I was shocked when I looked at it.



It was so accurate! Right down to the pointy nose. It only has five legs, but I think I excitedly snatched it from her before she got to the legs on the right side.

Then she drew another spider with all 8 legs.



Then she said, "I'm going to draw a car." And she did.



Initially it was just the half circle and wheels, but then she said, "I need to draw some windows."

Lastly, she drew this little submarine.



I was so surprised! Last time she drew me a picture (within the last couple weeks) it was just a roughly crafted face, and now here she is drawing these detailed little sketches that actually look like what she intends them to be. Lately it seems like everything comes to her in these short sudden bursts, one day something seems totally impossible and the next she is mastering it. It is such an amazing process to watch.

Once, she was unknowable.

This morning when I told KayTar we were heading to the doctor and she was instantly excited to see our pediatrician, babbling on about things she was going to tell her, but when I explained we were seeing her eye doctor her demeanor changed. She said, "But I don't WANT the eye drops. I don't like to lay on you and have drops in my eyes. Makes me feel SAD. No eye doctor. No drops!" Initially, I was struck by her memory. Although it has only been 3 months since her last appointment, I have never been able to accurately gauge how much she remembers because communicating those memories are a very, very new skill for her. Then, as her words washed over me, I realized that not only had she communicated a detailed memory, she had expressed her displeasure, fear, and sadness. I couldn't immediately do anything about it, because I wasn't sure what our exam would entail, but once we arrived I was able to talk to the nurse and reassure her that there would be no drops today. I was able to fix it for her, to banish her fears with just a handful of common words.

I think about the months and months of poking and prodding and testing and sobbing and fighting and fears, the silent painful merry-go-round we spent our days on for so long, and I wonder what it would have been like if she had this skill then...if she could have told us that the adhesive was making her skin burn, or that she liked to be held a certain way when having a blood draw, or that laying down to have her height taken made her feel like she was going to be strapped down and needled again. We muddled through those days somehow, but I wonder how much easier it would have been for her if she hadn't been locked away with her fears, muted with worry and wordlessly pleading for help. I remember her screams, all the screams, and I wonder what she would have said, what she was trying to tell me. It is easy to assume that if a infant or child can't communicate, tears and wailing simply signifies displeasure, and it does...but the possibilities within the realm of displeasure are vast and varied, how are you to guess which possibility it might be? How do you choose the right words to fight a fear you can't understand? I'd stroke her hair and tell her it would be over soon, tell her I was sorry, so sorry that she had to do this again and again, but I don't know if she could understand me or even recognize the emotion in my voice, if those words meant anything once they passed my lips. We muddled through it, she and I, neither of us truly able to understand the other, but I'm so relieved that today we are finally, finally, speaking the same language.

So much to say...

And I haven't been able form a single thought in my mind. At least not a thought that is coherent and worth taking up space out here in the ether. Nothing cohesive or meaningful. No insights. No huge updates. I've been largely unplugged from the Internet (except for a bit of inbox cleansing while at BlogHer, those forwards pile up, you know) for over a week and I'm finding that the longer I'm quiet the easier it is to just stay that way, and who wants that? So I, with the power of my medical doctorate of Googlology, wrote myself a prescription for blogging and it's time to fill it.

I feel compelled to do the post-BlogHer wrap up, but at the same time I'm reticent, because so many of you weren't there and so wish you had been. It was so different for me than last year, last year was all hustle and bustle and though there was much of that this year, I found myself sitting and talking with people much more often. Sometimes that talking was really SHOUTING OVER THE POUNDING DANCE MUSIC WHILE INEBRIATED, and sometimes it was in quiet moments while skipping sessions or taking a walk around the block, but still, good stuff, all. I laughed until I nearly peed myself a few times and I fought back tears once or twice, too. Not tears of my own really, but tears for these people whose lives and stories have sucked me right in, these people I find myself loving in a sudden and strange sort of way.

I was carded, of course. Oh BOY, was I carded. Imagine being at the front of a pack of 50 or so women all trying to get to the wine and having to dig through your crap and find your ID. Pure AWESOME. I also learned that don't pay attention to my wine intake nearly as well as my liquor intake (all those different names keep me on track with the liquor) and at one point I lost my social filter entirely and gave some KY Intrigue to some real life friends of Jess's. They have a two week old baby and I handed it to the husband and said, "You guys enjoy that in about 4 weeks." I'm pretty sure I also gave him a wink and the double thumbs up. Oh wine, how you betray my love.

Otherwise, it was exactly what you would imagine...beautiful, wonderful, amazing, intelligent women getting together and have a great time. It was that and more. I have to say I love the way you guys love my kids and look out for my wee KayTar. Many, many times people came up to me and said, "Sooo, what Day is it?" (if YOU are wondering, it is DAY 89. ALMOST 90 DAYS! UNBELIEVABLE!) and it was amazingly touching. I shouldn't have been surprised, you all do that sort of thing for me almost daily, but it was nice to blather on about KayTar in the flesh with people who have somehow become invested in this little saga of ours. Really nice. And that's that. BlogHer was great. I had such fun with my roommates (who were easily the best roommates I could have hoped for) and the Canadians and the wannabe Canadians and a few plain old Americans, too. It was refreshing and slightly exhausting, but I'd do it all again in a heartbeat. Or in half a heart beat. Or maybe in twelve months...yeah, that sounds about right.

I walked in this afternoon and KayTar said, "Mommy! MY MOMMY! I thought you was out of town! I thought you was GONE! I thought you was in CALLY-FORN-YA! I thought you was on an AIRPLANE! MY MOMMY MY MOMMY MY MOMMY MY MOMMY! Squeeze! Kiss! I'm going to follow you now! MY MOMMY MY MOMMY MY MOMMY!" I soaked in her delicious wordiness, sniffed her head again, and put her down so I could snatch her brother up. All he had to say was, "I want to go swimming, Mom." And I said, "What NO HUG?" And he begrudgingly gave me one and skittered off. I exhaled and thought, it sure is good to be home. Tomorrow KayTar has a ophthalmologist appointment bright and early in the morning (covered by insurance!) and our life stumbles on in the way it always does.

ps: I'd do that whole linky thing, but, ahem, "Dr. Google" told me no heavy lifting for this post. Who am I to argue? (translation: Kyla is tired and lazy tonight.)

Hi! Bye!

We're home. Unpacked. Clothes cleaned. Hair cut (a bad, bad hair cut, just in time for BlogHer). Started repacking. FLIGHT IN THE MORNING.

We had a great time. I survived without the Internet. And of course I have lots of photos to share and at least one story involving someone puking into the lake. Niiiice. I'll tell you all about it next week for sure, but in the meantime, consider this a postcard.

PS: NO EPISODE! Day 85. Wow.

Lovey love love: Part Four

You are now reading part FOUR the story of how Josh and I met as fetuses, still in the womb, via the Internet, and how he stomped all over my little teeny tiny heart. If you missed the other three parts, go read them. Now. I'll wait. Okay, you're back? Good. Here we go!

Reunited and it feels so good

It was the beginning of my eighth grade summer when we broke up. I spent the summer hating him and crying to my friends and seeing Austin Powers 13 times in the theater. I was crushed. And I was dreading high school, because I had to go to his school.

Over the summer, we talked on the phone one time. We were both in our usual chatroom and we started talking and he wanted to call me. So we talked for a few hours, but I still couldn't forgive him and he had a current girlfriend. When school started, it was all kinds of awful. This was a private school, and there were only about 20 kids in the entire freshman class. One of which was my ex-boyfriend, and another was his current girlfriend. She was popular, because she had been there for years and years. I was the new girl, the enemy her boyfriend used to love. She hated me, and made it known. Her friends hated me on principle.

In Bible, which was one of the few classes I had with Josh, I ended up sitting beside him because of the seating arrangement. I'd hear her saying things like "Don't look at her Josh, I see HOW you are looking at her and you better stop!" I spawned fights between them constantly, even though I wasn't even speaking to Josh most of the time. Honestly, they fought a lot anyway, but I was an added catalyst. School was awful, I had no friends, I was away from all my real friends, and I had to watch him with her every day.

Towards the end of my first semester, I was cast in a drama production. Josh's mom was my drama teacher. He and Girlfriend were in the play as well. I was very shy, but she helped me come out of my shell, and in the process I made friends outside of my grade level. I met people. I found something to enjoy, even if Josh and Girlfriend made out back stage at times. As the play progressed, Josh and I started talking more and more, because we were together after school and on weekends, and his mom volunteered to bring me to and from practices. I stopped hating him so much. When the play opened, Josh was spending a lot of time with me. He was telling Girlfriend he was going to the bathroom, but he was sneaking to my side of the stage. He would just sit and talk to me back there. He was calling me on the phone. Opening night we went to dinner together (with his family). He started telling me he was going to break up with Girlfriend. I was ecstatic.

He broke up with her the last day before Christmas break that year. She was livid. But surprisingly, he did not ask me out. We went to homecoming together, because his mom suggested we go as friends. He kissed me that night. The next day, we were friends again. I was still hoping, but it didn't seem to be going anywhere. One of my guy friends asked me out, so I went for it. I was tired of waiting. It did NOT work out. Once we started dating, he stopped calling me or answering his phone. It was like the guy didn't know HOW to be a boyfriend, and he panicked. While I was dating (but not talking to) this guy, Josh and I went out to lunch with my sister, as friends. We went out to the car while she was paying the bill. I used some Binaca, because I always did after eating..and he said "Can I have some?" I said sure and tried to hand it to him, and he leaned in and kissed me. I broke up with Bad Boyfriend. Josh did not ask me out. A few weeks later, he asked me to go see Titanic. We made out in my room after the movie. Then next week, he was going out with some random girl. I was going NUTS! What was he doing to me?!? I decided to let it go. While all of this was happening, Ex-Girlfriend and I had made friends. Good friends, actually. We had sleepovers every weekend, we spent time together after school, and her friends had become my friends.

Then in April, four months after he broke up with Girlfriend, he asked me out. We were at a school dance performance, he was on one side of me, and Ex-Girlfriend was on the other side of me. He was writing on a program and we were passing it back and forth. I panicked. I had let it go! I was done! And here is he asking me out, while I am sitting next to Ex-Girlfriend?! After the performance, I told Ex-Girlfriend. She ran out of the auditorium sobbing. I calmed her down after a while, and she ended up staying over. I told her I didn't know what I was going to do, because of what he had done...but I told her I had feelings for him in spite of it all. I told him I needed time...he had taken his already. I waited three weeks to decide him. After Bible class, I tapped him on the shoulder and said "Yes." he said "Yes what?" I said "To your question." and it was done. He told me that he had decided that morning to tell me to forget the whole thing, he was tired of waiting. I got in just under the wire.

And then we got married while we were practically still in diapers (okay, okay, we were 17 and 18, but close enough, right?), had a couple kids...and lived happily ever after, until right now at the very least. 7 years later and counting. Whoever said you shouldn't meet strangers from the Internet and subsequently marry them at a ridiculously young age? Heh.

Lovey love love: Part Three

As you can see from the title, this is part THREE of how Josh and I met as wee infants on the Internet, so if you missed the first two posts, go back and check them out!

Kiss and Break Up

This next portion is going to be fragmented, but it is necessary filler for the remainder of the story. :)

As we got to know each other, I found out that his parents taught at a private school that he attended...this was the very same private school my mom had decided I was going to for HS, although she didn't tell me until I mentioned where he attended.

The week after we met for the first time, I was invited to his house for dinner. His mom and sister drove him to my house to pick me up. I remember my older sister asking him if he ate meat, and then yelling "Oh God, another meat eater!" or something to that effect. It was very odd. We ate lasagna at his house, which I swallowed whole because I cannot stand to bite into onions (my parents didn't cook with them for that reason). We watched Grease with his family. I remember hanging out in his room for a bit and him showing me a computer game, DOOM, which he was in love with. He taught me how to play, and sent me home with a copy of it. I had no interest in video games, but I had interest in him and having an excuse to call and ask him questions about the game. His family called me "Cyberchickie" behind my back, I didn't find out about that until a couple years ago. :)

We started seeing each other regularly. One weekend we went to the mall with my friends. My mom told us under NO circumstances were we to split up from the rest of my friends. Well, we decided to see Beavis and Butthead, but my friends didn't want to. So they shopped while we saw the movie. We held hands for the first time in Beavis and Butthead Do America...oh so romantic. We shared an arm rest and he "accidentally" slid his pinky on top of mine, and when I didn't move my hand he grabbed it. One of my friends got antsy and called my mom and asked "Did you pick up Kyla and Josh yet?" I think she was mad at me for ditching her, because she couldn't have possibly thought my mom would have left her there. We were in TROUBLE. Oh, and also, I wasn't allowed to see B&B, so we said we went to see 101 Dalmations.

That night, I wasn't feeling well, so I took TheraFlu, which makes me HIGH AS A KITE. I went to bed and had an odd dream. I could only remember pieces, but I remembered getting out of bed and standing in front of the computer downstairs. Evidently, that night I got on the computer and chatted with Josh for a couple hours...and he asked me out. I STILL don't remember this, and he STILL thinks I'm lying about it. Somehow it came up that I didn't think we were going out and he got so upset. He thought I had changed my mind and was trying to get out of it. So I told him to ask me again, and he did, and I said yes.

The first time we kissed, we were behind a local elementary school, and he said "Kiss me!" SO dramatically...I did, even though I thought it was incredibly cheesy.

The first time we REALLY kissed, we were in my den watching Third Rock from the Sun.

We dated for 6 months. It was a great 6 months. I never even remember fighting. Then we went to a theme park with a couple of my friends. He said his friends were meeting us there later. I went on a ride with my friend L while my other friend and Josh waited for us outside. When I came out, he was gone. My friend J said he went to meet his friends, but said he would be back in 15 minutes. So we waited 30 and he never showed. I was a little upset, but we decided to walk around and see if we could find him. We walked for a while, and passed a restaurant...Josh stuck his head out and said "Hey! We're in here." and it was he and his friend T and 4 girls! I was soooo pissed.
I said "We're going to ride Batman, want to come?"
Josh: "No, I can't they are eating."
So I left with my friends. We saw him once for the rest of the day...I swear he had his arm around this girl, but he moved it rather quickly.
He said: "Are you going to the water park?"
Me: "Nope."
Him: "Okay."
And we walked apart. When it was pick up time, he didn't show, so we talked L's mom into leaving. We said "He can get a ride with his new friends." It felt great.
When I got home I called his house to see if he made it home. His mom said no and I offered to go back and get him. She was upset, but she said she'd send his dad out for him.

We tried to make up before I went to Alaska for two weeks, but I was still very upset.

While I was out of town, a mutual friend emailed me and told me to go look at Josh's webpage, but be sure to follow all of the links. So I did. I clicked on "My Girlfriend's Page" and it wasn't MY page. I was LIVID. I couldn't talk to him because I was in AK...but when I got home I tried calling him. I couldn't reach him. I thought he was avoiding me, he was actually in Florida. When he finally called me, I told him it was over and I knew, and I said "I don't love you anymore." He still says "That was so mean, Kyla, you really hurt my feelings." *lol* He deserved it.

As time passed, I discovered it wasn't just that 1 girl. He had taken someone else to his homecoming. He had kissed this other someone. There was WebPage girl. There was Real Life Girl #3. And Real Life Girl #4. Oh yes, 4 of them!

This is where 13 picks up.

PS: Don't hate him too much.

Lovey love love: Part Two

If you missed yesterday's post, I'm reposting the story of how a ridiculously young Josh and a absurdly young Kyla found love on the Internet...so go back and check out the first one before reading this one!

Or Maybe More ;)

We decided to meet over Christmas break one day that year, at the mall, because his mom was already going there for an ophthalmologist appointment, and my friends and I were bored and thirteen year olds LOVE the mall. We were still on the phone and hadn't yet decided on a place and time to meet, when someone called in on our other line. I switched over and it happened to be a coworker of my dad's in Alaska (my dad worked in Alaska)...so Josh and I had to hang up. We never got around to setting up a time or place in the mall to meet, but my friends and I went anyway, because we were thirteen and OMG! THE MALL!

As soon as we arrived, my friends started in with the endless refrains of:
"Is that him?"
"Ooooooh, is THAT him over there?"
"What about him?!?"
To which I replied,
"I have no idea, I've never seen a picture of him before." (these were the Internet wilderness days...there was no Flickr)


We shopped for a while, and then I started to get hungry, so we headed to the food court. As we entered, a guy passed me with two slices of pizza.
Me: "That's him."
Friends: "Shut up...how do YOU know, you've never seen his picture! Plus that guy didn't even say anything! And Josh has blonde hair...that guy doesn't."
Me: "Whatever, that's HIM. Go ask him...I'm going to get Arby's."

35 seconds later, my friends are back.
Friends: "OMG! Its HIM! We said 'Do you know a Kyla?' and he said 'Yes.' IT'S HIM!"

I grabbed my Arby's melt with Cheddar and my curly fries and went over to his table. We said "Hi." and not much else while my friends intently stared at us. After eating, we ditched my friends and walked around the mall together.

Don't ask me how I knew it was him, because I can't tell you. He didn't say a word as he passed me. I don't even think our eyes met. He was just some guy (without blonde hair, the liar!) walking past me with pizza...and I knew that he was Josh. spacemanZERO. I just knew. It is the single strangest thing that has ever happened in my life. I will never forget that day, what he was wearing, seeing his smile for the first time, or that feeling of knowing who he was before I had any reason to know who he was.


And so ends the meeting portion of our saga, join us tomorrow for the next installment....you know you can't wait to find out what this:



has to do with anything.

Lovey love love: Part One

Because I'm on vacation (WITHOUT INTERNET, oh the torture) for a few days, I decided to set up a few automatically posted reposts for while I'm away. I've never reposted anything before, not even as filler, so this is a first. Back when I first posted the story of wee Josh and wee Kyla and how they fell in love over these here Internets, many of you were not reading yet, so I hope you enjoy!

Friend Seeking Friend

When I was in the eighth grade, we got The Internet. I'm totally dating myself here guys, now you all know I am a baby. I'm sure not many of you had The Internet in the eighth grade. It was so exciting! I could pretend to be sixteen! Every thirteen year old really wants to be sixteen, because they are so MATURE! And respected! I spent the first 3 years of my Internet life as a 16 year old. Luckily, no one seemed to notice. But really, that is neither here nor there. In the midst of pretending to be my brand new mature, respected, sixteen year old self...my friends and I began chatting it up with real live people we didn't know. BOY people. I should mention here I had a 3D boyfriend, but he was only thirteen. When you are Internet-sixteen, real live-thirteen is quite a drag. So Friday nights, my best friend came over and we pretended to be super cool sixteen year olds who flirt with boys online. We had a blast. Of course, Saturday we still rode bikes around the neighorhood, but Friday nights? We were adults.

We heard about a website for our local radio station, called...(wait for it)...CyberLove. It was set up like a mail station, you set up a mailbox with a profile, and people could search and exchange messages. Because I had a boyfriend (stupid thirteen year old boyfriend), I was honest (ha!) and put my box in the "Friend seeking Friend" section. I think I put that I was fifteen, because this was local, and what if I met someone? Lying that you are three years older is TOO much, but lying about two years could just be a mathematical error, I guess. I think my SN was a character from a Christopher Pike novel, I didn't even know how to pronounce it, I just liked the character.

I found a boy, who was also "fifteen", and I emailed him. I have no idea what I said, but he replied. His name was spacemanZERO. He lived in a neaby suburb. He loved the Smashing Pumpkins and computer games. He was nice. We exchanged a few messages before we divulved we both had significant (I use the word loosely) others. His girlfriend was long distance, he was introduced through a mutual friend and they had met only one time. My boyfriend, well, he used to burp and blow it in my face at the lunch table. We continued to exchange emails, because we were "Friends Seeking Friends" (there isn't anything wrong with that!) and we both knew about the other's other.

Then SHE broke up with him! "OMG, Josh, how COULD she?!? I'm so sorry.(not!)" And inexplicably, the burping in my face became too much to handle...and I dumped Burpy. We were FREE...we could have, say, moved our profiles to the "Seeking Hetero Relationship" section, if we wanted. Instead, we started calling each other on the phone. We talked every day. After a few weeks of the phone business, we decided to meet.



***********************************************************


TO BE CONTINUED!

*evil laughter*



His avatar.


Now don't cheat and by digging through my archives to find the rest of the story...then what will you read while I'm away?!

We're off...(and I like parentheses!)

For a few days of Internet-less sun and fun. (did you hear that, NO INTERNET? it is practically CAMPING, cripes!) But the blog shall continue in my absence, as I've set up a fun little series of posts in advance (starting this afternoon), so stay tuned! Let's hope this trip goes better than the one to D.C...oops, I mean ATLANTA. Snort.



ps: she's on day 82! EIGHTY-TWO! (I told our pediatrician on day 78 and she said, "You jinxed yourself!" and started knocking on all the wood she could find, but thankfully, no jinx! (yeah, this boasting will probably bite me in the ass, I know, I just can't help it)) So keep her in your thoughts and prayers as it would be really nice to have a vacation uninterrupted by such a sad and painful thing.

If you're looking for somewhere to stay in Atlanta...

Might I suggest Concourse C of the Atlanta Airport?

The crown jewel of the accommodations is attached seating without armrests, thereby allowing you to stretch across a few seat at a time while only minorly altering the curvature of your spine. Also, there is an all night Charley's where you can buy beer and cheese steaks. But I hope you don't want french fries (delicious, horrible for you, cheesy bacon fries, SIGH) because they run out a little too quickly for my liking (like before it was my turn to order). The line can be troublesome, too, I don't think it was ever smaller than 30 people during my DELIGHTFUL stay.

****

The CDF (and Tara, who I harassed at ungodly hours of the morning) was so amazing. They did offer to get me a cab and a hotel last night/this morning. I passed because I thought a few hours of sleep was just going to make me feel QUITE cranky (I can be a bit of a bear where sleep is concerned), and the added stress of leaving (not to mention I still couldn't have gotten my bag), made it seem like it wasn't worth it. Plus now I can cross "Sleep in an airport" off of my life experiences list.

****

If you stare at the "NEWS EXCHANGE" sign at an angle with bleary sleep-deprived eyes for an extended period of time, it morphs into "NEW SEX CHANGE" and it might make you wonder what exactly goes on behind that nighttime lock down gate.

****

There were countless flights that were canceled or missed. I was definitely not the only person who was stranded. The terminal was full last night, I had to walk around for 30 minutes or so to find an open section of seats to take my little 30 minutes catnap on. About 1/2 of the people I talked to today had spent the night in the airport, too. It sure was something.

****

It was really quite an interesting people watching experience. I think someone should do a study regarding the instant camaraderie created in even these very mildly stressful situations. People who wouldn't typically say anything to their fellow travelers are suddenly very nearly best friend material. There was never crankiness among travelers, but quite a few expletives dropped in the direction of the airlines. AirTran=ENEMY. Travelers=BROTHERS IN ARMS. Fascinating.

****

I'm home. I've showered. Brushed my teeth. Taken a nap. It was heavenly. I'm still really disappointed I couldn't make it there in time, but hopefully, there will be other opportunities like this one.

Limbo...

I left the house at 5 this evening for the airport.

I discovered my plane was delayed.

And delayed.

And delayed further.

I checked on my connecting flight.

Again.

And again.

Both flights were consistently being pushed further back. Atlanta was having some sort of inclement weather.

At last check, I would arrive in Atlanta at 12:47 and my connecting flight would leave at 1:48. I would arrive in D.C. at 3:30am.

I called my (ever so sweet and kind) contact at the National CDF office. And she was so kind and said it was up to me. 3:30 is pretty late and she would understand if I sat it out.

But I thought about the day ahead of me, the march from Union Square to the Capitol. Speaking at the rally. Meeting with legislators. Me! Meeting with legislators. And I decided to hop on the plane and take my chances. I figured I'd never regret giving it a shot, but if I had decided to stay home, I would have always wondered what it would have been like.

We finally boarded the plane, at about 9:45.

We arrived in Atlanta at 12:48.

I check connections. My plane was gone. The other flight to D.C. was canceled. No other flights through the airline were going to D.C. until 4pm tomorrow, which is technically TODAY as I type this.

So I'm sitting in an airport in Atlanta, blogging and waiting for my flight home to Houston in the morning. 2.5 hours down, 5 hours to go.

I still don't regret getting on that plane, because if I hadn't, I always would have wondered. But, am I ever bummed that I won't be in D.C. today raising my voice alongside so many others, all calling out for the same thing, healthcare for the children...your children...my children...ALL children, because the sound of those voices is going to be so very beautiful.

The schedule that ate my soul...

Today:
Finish math review and extra credit. Study for final.
Take KayTar to the pediatrician.

Thursday:
Take final.
Fly to Washington D.C.

Friday:
Meet with legislators and such in D.C.*

Saturday:
Fly home.
Unpack.
Do laundry.
Pack for family vacation.

Sunday:
Leave for family vacation.

Wednesday:
Get home from vacation.
Do laundry.
Pack for BlogHer.

Thursday:
Fly to San Francisco

Sunday:
Get home from San Francisco.
PASS OUT!


* Like how I sprung that on you? Sneaky. Yeah, tomorrow I'm headed to D.C. for some legislative visits and that sort of thing. Hopefully I'll get a chance to update soon, but with this schedule, who knows when!


ETA: Looks like I probably won't be going to D.C. this time around. Initially we didn't realize they really needed KayTar to come along, too, and we just can't make the schedule work with her added in. She's sick and due for an episode, and she can't handle a whirlwind trip up there and then turn around and go on vacation when we get back. It is too much for her little body. We're still waiting to hear final word, but it looks like we might be sitting this one out.

Ignore me. I'm going. Heh.

Not-exactly-normal

We've learned to take risks, but it doesn't mean the fear is gone.

KayTar has camp today, Day 76, and I am at a loss for the proper way to handle it.

She woke up so cranky. Cranky, but fine. Cranky can be a warning sign.

She seems to be a little congested. Illness sometimes coincides with episodes.

Or, she might be cranky because she woke up a little congested, and Day 76 will pass just like Day 75 or 74 or 73 or 72 or 71...

The difference is, today I drop her off at camp, roughly an hour away from home.

Do I use her slight head congestion as an excuse to keep her home? To keep watch over her? She's dying to go back to camp and we all know keeping her home would have nothing at all to do with her stuffy little head.

Do I drop her off and come home, like I do every other day? If so, it might take me an hour to get to her and another hour to get her back home...in that kind of pain, in the bright sun of the day, I can't imagine her having to wait that long for the quiet dark of her home, her sick seat, her bed.

Do I drop her off and busy myself for 5 hours on that side of town? What will I do? What if it doesn't happen today? Will I spend 5 hours out there every day this week, waiting for something to happen?

What about BubTar? Do I let him spend the day with my mom, so he isn't bored to tears if I stay out there? Do I try and plan something fun for us on that side of town, knowing it might get cut short? Do I let him choose? What about tomorrow? Or the next day?

By the time I post this, I'll have made my decisions, but I won't know until much later if the decisions I've made are the right ones. Here's hoping.


ETA: In case you are wondering, I let BubTar stay with my mom, I took KayTar to camp as usual, and I stayed on that side of town. I actually had a delightful day...spent time at the bookstore, went to see SATC at the movies, grabbed lunch at Whole Foods, and then picked up the kids. She did great. No problems at all! [insert large sigh of relief here] Now I just have to make decisions about tomorrow. Oh joy.

On the Fourth

Last night, we watched fireworks with our friends for the first time in four years. The last time we spent the Fourth together, BubTar was a pudgy little two year old and KayTar was just a tadpole in my tummy, making me endlessly miserable. And I do mean MISERABLE, the child wreaked havoc on my poor little body. That 4th of July weekend was wins the blue ribbon in the category of Most Miserable Three Day Time Period. I was taking both Phenergan and Zofran and STILL my stomach rebelled often and with great passion. I had acid reflux and my intestines were refusing to do their very important civic duty. My bladder decided it could only hold about a teaspoon at a time. It was pure, unadulterated misery. BubTar had a magnificent time, though. He was totally convinced the fireworks were just for him, in that innocent, wide-eyed toddler way. Regardless of how very, very miserable I happened to be, I always remember how pleased he was and I never regret making that weekend trip, because his joy and wonder made it worthwhile.

We haven't gone to see fireworks since, mostly because of KayTar. She was an infant the next year, and then the following year we had just discovered that things weren't exactly right with her. And last year, well, we were still kind of hiding from the episodes, afraid to do too much, to go too far from home, to induce too much excitement, to tempt fate by having fun. This year, finally, in so many ways we seem to have hit our stride, our abnormal sort of life melding into our own version of not-exactly-normal normalcy...we feel free to go and do and be, although we understand that in doing so we're taking the risk of having to rush back home, curtailing everyone's good time, to tend to a very sick KayTar. Sometimes the risk doesn't seem to be worth it and everyone ends up feeling worse than if we hadn't tried at all, like on BubTar's birthday when we had to leave the Children's Museum almost upon arrival, my poor little guy apologizing to his sick sister about things that he has no control over. But sometimes, like yesterday, we go out on Day 73, fully tempting fate, and we end up having a great time and somehow find ourselves in Day 74 without so much as a blip.

Last night as my friend L and I walked KayTar around the park, we laughed about just how terrible that weekend four years ago was and marveled at how that tiny little misery-inducing tadpole had grown and grown, challenging me all the way, and was now standing between us, holding our hands and laughing along with us. That is the beautiful thing about tradition, you can have one foot in the present and one foot in the past, watching them play out side by side. But when I looked down at my little dear, I not only saw the shadows of the last year we all celebrated together, but all those in between. I was reminded again of how having this little KayTar in our lives has irrevocably changed the make up of our family, and changed the way we see the world and move in it. Four years ago, this was just another simple holiday celebration, but yesterday it felt like so much more.

I wrote this yesterday, but forgot to hit "Publish" because I am a genius. And also? Today is Day 75. Hello there, New Record, nice to meet you.

Wordless Wednessday: The new baby

More Wordless Wednesdays...

Fancy talk

Last week, KayTar really wanted us to open her ladybug kite. We've had it for a while, but never taken it out for flying. In this part of the world, there are really only three weeks in the calendar year that are appropriate for kite flying. They generally happen in March, during the split second that resembles a typical spring elsewhere. We missed the window and now the kite stares at KayTar longingly, day after day, and KayTar fully believes that if we opened it in the house, the kite would unfurl its wings and soar around our ceiling. That is what kites do, after all. We tried explaining that it doesn't really work that way, kites have to be flown outdoors with a nice wind blowing, which we didn't have, and that the weather outside was really too warm for humans in any case. After the 500th time we had this conversation, it was clear we were at an impasse and finally had to hide the kite altogether.

She came up to me and said, "I'm finking of something....it's a diamond and it has a ladybug on it and it has a string and a bow and it goes FLY! FLY! FLYING! What is it?" I was instantly impressed, because that is pretty well thought out, knowledgeable speech even for a typical kid, I think...but for KayTar, whose entirely vocabulary consisted of clever little scripts a month or two ago, it was astounding. I almost posted about it here, but then I reconsidered. It was probably just a script I hadn't heard yet, something new she had memorized off of TV.

Then yesterday at nap time, there was a garbage truck making QUITE the ruckus outside. It was idling very loudly, the machinery was making growling sounds, and then they decided to honk the big horn repeatedly. KayTar called me in and said, "Do you hear that? Do you hear that BIIIIG bus?" And I told her, "No, its a garbage truck. It came to take everyone's garbage away." It continued to make noise and she said, "Do you hear that? I'm hearing something that says (idling noises) and (growling noises) and BEEP BEEP BEEP, and it takes the garbage away. What is it?" So I said, "A garbage truck!" And she said, "Yes! That's correct!"

I think that maybe, just maybe, she really is coming up with these little word games all on her own and it seems nearly impossible to me, this huge leap in her understanding and language usage. Skills always come to her in big bursts, so that she is nearly unrecognizable from her former self. I remember it now, I can still see the shadow of the KayTar-that-was right next to the KayTar-that-is...the awkward rote "conversations" we always had with her, the scripts she used to cover the gaps in her language and in her understanding...but in a few weeks, that shadow will dissipate and it will seem like it has always been this new way, that she has always been a kid fully capable of give and take conversations, of witty and intelligent statements, of making us laugh with her spontaneous observations about the world. The only proof of days gone by will be the words recorded in this place, the road map of our journey together, the mile markers stretching back as far as the eye can see, always reminding us that there was a time and place before this one, and that we had to go over mountains and through valleys to get to this solid and even ground.