We Are A Family

Luke, Me, Niko, Nina, and David Bowie. We all live in a little house among the stars and skip around holding hands all day.

The Rosy-Lipped Batfish

I saw this in Ranger Rick. And I may never sleep again.

Who doesn't like men? Banshees, maybe.

The funeral rocked. As much as a funeral can rock. Everybody was on their best behavior. We remembered the good things about grandpa and nobody came to fisticuffs by the grave site, which was a very real concern for me. Although Niko, out of his element, spent the time doing his death metal scream on the other side of the cemetery with Dad and Luke while I bent my head and tried to look pious during the dedication.

Do any of you struggle with how much information to give out? When Niko was diagnosed with Williams, we had been living in the same area for a while, and he was a year old. So he was already established and it didn't seem to change any of our friend's perceptions of him. Or at least they were generous and gracious enough that we didn't pick up on it, if it did. Then we moved to this (insert colorful language of your choice here) city, and all of a sudden, for the first time, we had to say, "This is our son Niko and he has Williams." And people were taken back. What is this strange syndrome? Is that why your son simply cannot sit still? Is that why he throws back his head and howls like a banshee on crack? Do you believe in banshees? And how would a banshee get crack? The public must know.

I don't know how to address this at large family gatherings. (Williams, not banshees on crack.) It's always been easy because my side of the family doesn't gather so much, so it never came up. I've always been an open person. In my opinion, it's always easier if people know things because then they can be prepared enough to behave appropriately. Unlike, say, when people get a divorce and it's a huge secret and suddenly you get a verbal caning for asking them to remind their husband that he's singing in church next week. Yeah, some of you guys know what I'm talking about.

Uh...I mean, that's just a random example.

I don't want people to think that Niko's misbehaving, because he isn't. He's doing the best that he can. I want people to be sensitive to the fact that he processes thing differently. But I also don't want to be tottering around pointing at my son and saying, "Niko? Williams. Deletion of the elastin gene. Delayed and loud." Because that's just stupid.

Other funeral highlights: Pervy uncles that somehow found God, emo cousins that suddenly turned respectable, and questions about my outfit, which was a black, white, and gray dress with my 4 inch Red Stilettos of Death. My response? "Grandpa's dead. I'm not." Also, my great aunt blinking her big blue eyes at me innocently and asking if my husband likes men. "No, he's married to ME", I say, prompting a long debate with my brother about men we know who do actually like men, but are still married to women. One of our super enjoyable "Psychology major vs. Sociology major" rows. We put on gloves and boxed. Every argument had a thesis statement and was backed up by three points. Turns out she just meant, does he like men to, you know, play basketball with, and stuff. Oh.

Booya.

Well, it's official. We're screwed.

Okay, so maybe it isn't that bad. Ask me after homemade pizza and tonight's episode of America's Next Top Model, and perhaps I'll have a much cheerier outlook.

Niko survived his cold, and then days later came down with a particularly nasty stomach bug. He's a bag of bones anyway, but he's lost more weight, and now Nina has it, too. The doctor doesn't think that he needs to come in until he hits a list of criteria, and thankfully he isn't that ill yet. And I think he's improving. But he's been lying on the floor/bed/my lap since last Friday. Today is Wednesday, for those who are interested.

This is a sad thing on its own, but my grandfather passed away a few days ago and we're planning on driving sickie children seven hours to the funeral. Which I'm singing in. Some of the family is "in" on the Williams thing, and some really will have no clue as to Niko's funeral behavior. Luke and my father have both volunteered to watch the kids in a spare room in the church if necessary, and of course it will be necessary. Niko is constantly squirreling under the pews and vaulting for freedom, although if he still continues to be listless...perhaps I should look at his weariness as a good thing. "What a well behaved child!" somebody might say to me. (That has never happened before, so of course this is a beautiful fantasy of mine.) "Thanks, he's sick," I'll say, and traipse off for what I am certain will be the post-service scuffle.

Usually I am much more optimistic than this. It doesn't come especially naturally, but I try. I have faith and hope and wonderful family and friends. I feel support. But some days, don't you just want to throw your hands up in the air and hit Cold Stone Creamery? I do. Oh man, DO I.

Meanwhile, Nina is babbling. Da da da blah blah nuh nuh nuh. She makes more sounds than Niko ever did, and she's six months old. Perhaps they'll chat together. She adores her big brother. Niko's sticking his fingers in his ears and humming/yelling more than ever now. Apparently I put his socks on too loudly. I'll be more careful of this in the future. :P And his hair? With all the rolling around on the floor, it has gone totally Cloud Strife. Totally fantastic! Google my geekdom, people. ;)

Ha Ha! I Laugh At You! (Cautiously)

So! Niko suffers from the Mother of All Colds, but not pnemonia, RSV, or bronchialitis. I am so relieved! I feel like we scrambled out from under the gun, and I fling insults at this illness! You can't keep us down, baby! We always come back. We always survive. Then I knock on wood and pray in gratitude. Lesson learned. Wellness treasured, check. Not taking things for granted, check. Relief and little bit of I-Get-Knocked-Down-But-I-Get-Up-Again cockiness, check check CHECK. Because a bit of swagger makes me cheerful.

And mama needs cheerful.

The Williams Law of Physics

Reality slaps us down pretty hard sometimes, I think, but it's all for a good reason. Ah, the cold and flu season! It makes us grumpy and turns us into gravel voices on the phone. But when you have a medically fragile child, it takes on this new kind of intensity.

Okay, so it's not new. It's the same kind of intensity that we've experienced for the last four years. Is it possible for intensity to be grinding? Because if there is such a thing as a grinding, wearing intensity, this is it.

Niko has been sick since Wednesday, the first to go down. He had a fever and a slight cough, and was cuddled, bathed, sponged down, sung to, napped with, and taken care of with SO MUCH CARE. All while caring for Nina, and sanitizing everything so that Sweetness herself wouldn't come down with Mystery Illness, too. On Friday I went down. Hard. Luke took the kids and I didn't spend more than half an hour at a time out of my bed. Saturday, after a victorious 5k race, (take that, illness! Fie!) Luke went down. I managed to wake the dead (myself) and get a handle on the household.

Cut to today, Super Bowl Sunday. Which is important to millions of people, but not to me. Nina's fussy and sleeping a lot. Niko's coughing every five minutes, although with a little more energy. Luke is practically human, and I'm breathing. So what's wrong?

This is what's wrong. We're taking the kids to the doctor in the morning. For those of you who have witnessed this experience firsthand (Dad) you know that his terror and shrieking makes everybody downright stupid. It's really hard to take him. I've convinced myself that he has pnemonia, and the last time that he did, we were incarcerated inside of the hospital for days. I was slowly packing an overnight bag for Niko and myself, just in case, and the feelings that rushed over me were absolutely overwhelming. What if he is in the hospital? He's bigger now, and I'm sick myself. What if we're there for days? What about Nina? But mostly it was not again not again not again.

An object in motion tends to stay in motion. An object at rest tends to stay at rest. We had been allowed to stop the crazy carousel ride for a while and just rest. No hospitals. No meds. Just rest.

It hurts to give this up. It's like taking a breath and saying, "I somehow thought all of this was over," and then realizing that it won't ever be over, not really. There will always be colds. There will always be hospitals. And of course, there will always be Williams. That's just the reality of it, and like I said, sometimes reality feels that it needs to slap us down. I think that I choose to be grateful for that, because when you rest for too long, like we did, you forget how it was before. I was taking Niko's general good health for granted, and I don't ever want to do that. I want to always treasure his wellness.