Tag Archives: kiddo

Dear Representative: Save the Affordable Care Act

Dear Representative Cummings,

I am a legal permanent resident of these United States, currently living in Maryland’s 7th district, represented by your voice in Congress. I am writing to you today to ask you to keep up the fight to preserve the protections contained in the Affordable Care Act, and to work hard to convince your Republican colleagues to reconsider their efforts to repeal the Act. My son’s life may depend on it.

Liam is two and a half years old. He loves to play his ukulele and harmonica, and his favorite planet is Jupiter. He insists on wearing bow ties, he likes to help me make my coffee in the morning, and he tells me every day that he loves me “really much.” He is the greatest joy of my life. Born with a genetic condition called Neurofibromatosis (NF), he has already endured five sedated MRI scans, to watch carefully for growth of the tumors that already threaten his optic nerves and other regions deep in his brain. Every three months, we bring him to the hospital and hold him as they apply the anesthesia mask to his face. He holds his beloved Elmo, and we rock him and sing to him, but he always cries. He cries because he doesn’t understand. We cry because we do.

Despite all of this, he is a thriving and joyful little boy, loving and learning and testing his limits like every other toddler. He sees an ophthalmologist and a neurologist regularly, and he goes to music class on Sundays. He sees a physical therapist and an orthotist for the low muscle tone that come with his condition, and he has soccer once a week.

His extensive medical care is just a part of our life, and we adapt. We are grateful that he hasn’t yet needed any surgeries or serious intervention that would require hospitalization. Other children with NF aren’t so lucky. A day may come when chemotherapy will be necessary to stop Liam’s tumors from taking his vision. Serious and complex surgeries may be needed in the future, to remove painful nerve tumors growing along his spine. And one day, he will grow up and grow out of his dependence on us, leaving him to find coverage for himself. This is why we can’t allow the Affordable Care Act to be repealed.

If lifetime caps on benefits are reinstated, chemotherapy or surgery could have us reaching those caps within a matter of months. If pre-existing conditions clauses are allowed, my son may not be able to find affordable health insurance for himself when he grows up, because of a spontaneous mutation that occurred before he was born. And if anything happens to us to affect our ability to work, we need better options than high-risk exchanges or bankruptcy. Yes, we hope to maintain access to employer-subsidized health insurance, but without protections in place for us and our family, we’re one layoff away from a disaster. That’s a lot of stress to carry, when we already carry so much.

I came to the United States from a country where healthcare is understood to be a basic necessity, and is available to all through the taxes that residents pay into their government. When I moved to Maryland in 2007, I was consumed by anxiety. I had a good job with good health benefits, but what if I were to get sick enough that I could no longer work? What if I lost my job and it took me several months, or years, to find another? It’s common knowledge across the globe that Americans lose their homes when they get cancer, and carry crushing medical debt if their children have special medical needs. The passing of the Affordable Care Act, and the protections it contained, made me feel much safer here. America could be humane about health care after all.

That’s why I can’t understand why so many Republicans want to erase that progress and put stress back on American families and individuals. Surely they also have families of their own. Surely their constituents include families like mine, children like Liam. Why do they want children like my son to be left without access to reasonable health insurance once he’s out on his own? Why do they want to cap how much health care any one person is entitled to? Why do they want us to live in terror of losing our jobs or getting sick? Why do they think that families with sick children need the extra strain on top of what they’re already living? Why do they ignore the voices of the people they represent, and feel that they know better?

Please, sir, bring your Republican colleagues my story. Bring them all of our stories. Please appeal to their humanity and encourage them to do what is best for the people who are depending on them. Liam is counting on you. Our family needs the ACA “really much.”

Sincerely,

Me.




Toddler conversation

A conversation with my toddler, now two-and-a-half:

“What dat, Mommy?”

“That sound? That’s the car engine. We’re leaving the parking lot to go home.”

“No. What DAT?” I hear the swish of his jacket fabric as he raises his arm to point at things I can’t see.

“Honey, I can’t see what you’re looking at. Can you tell me what color it is?”

“WHAT. DAT.”

“Is it blue? Green? Can you tell me what shape it is?”

“Mommyyyyyy…. what IS dat?”

“Liam, you’re going to have to give me more information. Where is it? In the sky? On the ground?”

“It right DERE, Mommy. What is it?”

I pull the car out of the space and look around for clues. The rear-facing child seat makes this game exponentially more difficult.

“Do you mean that big van?”

“Nope.”

“Is it something in the sky? an airplane? A rainbow?”

“Nope.”

“Honey, I’m out of ideas here.”

“MOMMY WHAT DAT?” Swish. Point.

“The flags? Do you mean those flags?”

“Yes.”

“Those are flags, Liam.”

“Oh. Okay.”




Gamer Baby in Three Easy Steps: Intro to Toddler Board Games

Like board games? Have toddlers in your life? Want to share that love of competition and collaboration and teeny wooden Meeples with the next generation? There are some really, really fun toddler board games out there, designed for children as young as 2. They’re simple enough to teach to kids who have a limited vocabulary, but they’re not insipidly stupid, so parents won’t lose their minds playing along.

We’re lucky enough to have a group of gamer friends whose kids have been playing since they’re teeny, and they introduced us to some of the best toddler board games out there. These three are our favorites, and taken together they’re a solid three-step process to getting your toddler (or someone else’s) into the basics of board games – both the rules and the fun.

Step 1: Go Away Monster

(Cardboard pieces. Recommended for toddlers as young as 18 months, depending on temperament.)

Go Away Monster Toddler Game

This is more of a puzzle than a true board game, but it’s excellent for teaching toddlers the important concepts of turn-taking and placing pieces on a game board. There are four eclectically decorated flat cardboard rooms, and a small canvas bag of assorted bedroom furniture. Players take turns picking a piece out of the bag without peeking, and hope to pull out something that they need – a teddy bear, maybe, or a lamp. But there are monsters lurking in the canvas bag, too! Any player who pulls out a monster gets to throw it into the game’s empty box, saying “GO AWAY MONSTER!” This is, by far, my son’s favorite part of the game.

When you first start playing, it’ll be a challenge to get the kid to give up the bag for someone else’s turn, and to keep them from peeking into the bag to find their favorite pieces. In theory, the game ends when one player completes their room’s decor, but it’s okay not to push the concept of winning or losing just yet. It can be a good lead-in to discussions of sharing: “Mommy just got a bed out of the bag! But Mommy already has a bed in her room, what should I do? Does anyone else need a bed more than I do?”

Step 2: My First Orchard

(Cardboard with painted wooden pieces. Recommended for toddlers 2 and up.)

First Orchard Game Toddlers

This could also be called “My first Co-operative Board Game,” because this game pits players against a hungry crow who is trying to get to the orchard to steal our basket of fruit.

The shiny fruit pieces sit in their cardboard “trees,” waiting to be picked when a player rolls the right color. Yellow? Pick a pear and put it in the basket. Blue? Pick a plum. The basket symbol is a freebie – you can pick whichever fruit you want. If you roll the crow, then the bird moves one more step along the orchard path. If he gets to the orchard before you’ve filled up the basket, the game is over!

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The orchard game reinforces turn-taking skills and teaches children to roll a die and follow up with the appropriate action. My 2-year-old still has trouble with the basket symbol and how to proceed when he rolls it, so we’re currently using the basket as though it meant “roll again.” Younger kids also won’t understand the winning/losing aspect of moving the bird along the path, but they’ll get there. I love that this game starts out as a simple roll-and-match game for the youngest players but grows with the kids as they grasp more concepts.

Step 3: Snail’s Pace Race

(Cardboard game board, wooden pieces. Possible choking hazard, so I recommend age 2 1/2 and up, depending on your child’s propensity to stuff things in their mouth.)

Snail Pace Race Game

This is another one that’s not really a game, as there are no winners or losers. Six bright wooden snails are lined up at the starting line for a race, and are moved ahead depending on what the dice say. Players take turns rolling two dice, and moving the snails that correspond to the colors they’ve rolled. This introduces the idea of moving pieces along a board according to what dice tell you. Because sometimes you will roll the same color on both dice, kids will learn how to decide whether a piece needs to move one or two spaces.

Full disclosure: we don’t have this one for our son yet, but we’ve played it at a friend’s house, and it’s on our wishlist for the holidays. He’s asking us to play both Go Away Monster and “the apples game” almost every night, and it’s time to add this one to the rotation.

If you’re looking to get some games for the holidays, definitely consider these. They’ve brought us hours and hours of fun. They’re well made, and can stand up to grabby toddler hands. Absolutely worth the cost.

Note: links above are Amazon affiliate links, and you can learn more about that here. I only link to items I like enough to recommend to actual friends.




Liam at Two Years Old

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Two years. Twenty-four months of squirming and growing and changing. The changing is both the best and the worst part, because just as I get used to the baby I have, a new one comes along with new words and new skills and new opinions that don’t line up with mine.

Stats

  • Height: 33.5 inches
  • Weight: 27ish lbs
  • Favorite foods: Chicken nuggets, raspberries, muffins, french fries, raisin bread
  • Favorite toys: Weeble-wobbles, toy broom, toy phone (or Mommy’s phone, if he finds it), ukulele, new outdoor slide (thanks, Boobah!)
  • Favorite books: Goodnight Moon, the Mo Willems “Pigeon” books, Zoom City, Chicka Chicka Boom Boom
  • Favorite activities: Splashing in water, dumping things out onto the floor (especially Cheerios), reading, sharing things, watching short videos of other kids, going for walks, playing music on anything remotely like an instrument

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Chit-Chat

He’s talking so much that I’ve stopped trying to keep a list of words that he knows. New words come daily – hourly – and even though the conversations get repetitive, we’re talking together. I ask if he wants milk, he says yes. He asks for books, and I read them. He’s old enough now to understand what’s being said around him and we’re going to have to completely shift how we talk in his presence. In the car, when Dave asked what I wanted for dinner, I said “anything but pizza,” and Liam screamed TEETSA!! from the backseat. And he doesn’t even like pizza.

He even tells us stories about his school day, if we prompt him with leading questions. Did you play outside? “Ow-kide, yeah, Au-dee!” You played with Audrey? Did you see Zoe today? “Yeah! Doh-ee go ‘ome!

He is almost constantly chattering at home, even though it’s still toddler-speak that most people can’t quite understand. He says atsoo to us when we sneeze or blow our noses. “Uh-oh Leenum” when he trips. He plays happily with the pots and pans in his new toy kick-in and he draws with his yayons. He yells at “Ahmul” to get off the counter and away from our afternoon hnack of wabeewees and yoguck, and asks politely for me to o-peen my coffee tin in the mornings so he can hmell mommy foffee.

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He likes to hear me laugh – Mommy appy. Liam is NOT appy when I won’t let him watch Elmo wee-ee-yos on YouTube, though, even though he’s earnestly patting my chair, repeating “ere, Mommy. Dit, Mommy, Dit down Mommy.” We stop at the mailbox to check for new meeul every day after school and he always stops dead in his tracks if he sees a murm on the wide-walk. He loves his murms. And nakes, which are really just giant murms, after all. When I say “I love you Liam,” he’ll usually answer with I-lahyoo Daddy but if I’m out of sight he’ll sing-whisper Mommy wheyayoo? Most fruits are “apples”, and most veggies are “no.” He surprised us with plurals last week, telling us he saw “two beeeg deers” outside.

Development

If he sees or hears a thing once, he wants more. Explaining that I can’t make more deer appear in the backyard right now, or ask the garbage truck to drive past the house seventeen more times, leads to plop-down sit-in toddler protests. Protests are getting more frequent in general, and it’s hard to know how to react to some of it. Picking battles only works if you’re pretty sure which ones you can afford to lose without long-term consequences, and we don’t yet have that confidence. He dumps his food out of bowls, holds utensils out and watches them drop to the floor, and smashes crackers into dust and drips milk onto them. That’s when he’s in a good mood. We like to think he’s experimenting with physics and chemistry.

When he’s cranky or doesn’t like what we’re asking of him, he’ll shove whatever he’s holding with a huff and cross his arms. If he’s not holding anything, he’ll look around, find something, and glare at us while deliberately shoving it to the side with the absolute most disdain that a two-year-old can muster. If he doesn’t feel it’s moved far enough away from him, he’ll reach out and shove it again for good measure. Hmph. TAKE THAT.

He has a solid concept of “mine” and applies it often. Labeling things as his, or Mommy’s, or Daddy’s, is a seriously big deal to him. If we sit in the “wrong” chairs at dinner, he’ll tell us.

13483318_1231382123562274_6059097716345640770_oBut he’s also such a loving kid. He’ll run in for a hug anytime, and he’s still asking for “up” a million times a day because he loves to be held. We have snuggle time for a few minutes every night before bed, and he’s just devastated when I end it. Bedtimes are rocky again, with a new emotional attachment causing him a lot of distress when we leave the room. We’re working on it, but it’s been an exhausting few weeks.

Move it move it

Liam’s physical side is developing well, too, and he’s getting so much faster and stronger. He can zoom up the stairs in a flash now, even though he’s still mostly on all fours to do it. He’ll zip up the first three and then turn to yell “c‘mon, mommy!” He can also scoot down stairs on his butt now, but he prefers to do it standing, while holding the railing and saying “Leenum fah-full” with every step (I guess I warn him to be careful too often).

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He’s been more into physical play in general, probably because of his daycare buddies’ influence. He likes to roll around and be tickled, and climb on chairs and boxes. He’s started running, which is amazing to see, when we were so worried about his late walking. He loves to go for walks as often as we can find the time, and he’ll run ahead to make me chase him a lot. But he still tires pretty quickly, and he’s still unsteady with quick changes in direction or wobbly terrain. We’re still working with him to explore new ways to move and get more strength and coordination, and his new bike and new climbing structure/slide will help a ton this summer.

He’s a real kid now, not just a squishy little critter, and that’s just WILD. We’re finally able to share experiences with him and have him share them right back after they’ve been processed by that little toddler brain, and the whole thing is fascinating. I can’t wait to see the changes that are coming over the next few months, even though I’m sure the terrible twos will be rough on all of us. But we’re all still learning, and we’ll get through it all together.

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Love you, little dude.

 




Snuggles

I struggle to hold him still on the changing table as he twists his little naked body around to reach the light switch. “ight ahfffff!” he declares proudly, dragging out the ffff as though he were blowing out birthday candles. Not for another couple weeks, kiddo. I reach out to flick the light back on and spin him back around to secure the velcro on his diaper while he wiggles his feet in my face. “eet?” he asks. I grab one little foot and kiss its sole. MWAH. He grins. “Udda eet?” the other foot comes up beside the first, and I continue delivering kisses, MWAH MWAH MWAH, back and forth, one foot, two foot, while I get him into his shark pajamas.

I hoist him up and turn to set him on the floor, and he stops me, asking eagerly “Nunnel fuhst mommy? Nunnel?”

Of course.

Of course we can snuggle first.

Still holding him, all twenty-six wiggling pounds of him, I switch on the nightlight and pull the cord on the ceiling fan to dim the room with a click. I back carefully into the soft brown recliner and shift him into my lap, but he squirms free with a grin. “Cose! Cose dees!” he toddles to the bedroom door and pushes it closed with a click. He crosses the carpet to his crib and sticks his hand through the slats, all the way to his shoulder, to the very edge of his reach. He yanks his hand back out, triumphantly waving his frog Wubbanub. Half pacifier, half stuffed animal, “Bubba” is a snuggle time necessity. He pulls a blanket from the crib rail, pops Bubba in his mouth and walks towards me, stuffed frog dangling from his little face. He drops the blanket on my feet before lifting both hands up and out, and bouncing a little at his knees. The international toddler sign for “up, mommy.”

He’s heavy. The angle is awkward. I huff and I oof and I drag him up to my lap and he shifts around until his arms are in just the right places before he drops his head to my chest with a soft thud. He’s quiet except for snuffly breathing and the little sucking squeaks that escape around the pacifier. I wrap him up in the blanket and he wiggles an arm free, lifts his head, readjusts his shoulders, drops back down. He’s settled. He’s comfy.

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My mouth is right against the top of his head, and I kiss him. He doesn’t smell like a baby anymore. He smells like sunscreen and sweat, like an active little boy. But it’s the same weight on my chest, only heavier. The same little heartbeat, only stronger.

I don’t get to contemplate my toddler for long, because after thirty seconds of ‘nunnels’ he pops the pacifier out and looks up at me. “Suh-shyyy?” I sing for him, rocking, telling him he’s my little squirm-shine and he makes me happy. After three rounds of suh-shyyy, two baby belugas, and a twinkle twinkle, he pulls himself up and points to the space between the chair and the bedroom wall. There’s a pillow stuffed in there, is that what he wants? He nods, and the frog in his mouth hops twice. I shimmy the pillow loose and move it to the arm of the chair, and he immediately throws himself into it with a grin. I can’t see the grin behind the Wubbanub, but his eyes are bright and happy, and there’s one sweet dimple peeking out beside the pacifier’s edge. I grin back at him and his eyes sparkle brighter and the dimple gets deeper, and just the smallest “heh” escapes behind the frog.

I hug him tight, so tight.

I’ll snuggle you as long as you’ll let me.




Liam at 21 months

Twenty-one months.*

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It’s weird to keep counting age in months, and I know moms are made fun of for doing it, but it’s such a weird place to be, in between one-and-a-half and two. Neither one of those fits, because he was someone else at 18 months and he’ll be completely different all over again by 2.

So much has changed since my last update. He took his first independent steps at Grandma and Pop’s house, carefully carrying my travel mug full of coffee from one side table to another. He didn’t realize he’d done it, but my mother-in-law and I looked at each other with huge incredulous eyes and then spent the next ten minutes handing him other things to carry around. He toddled happily from one adult to another, carrying balls and books, for an hour. Lots of cheering, a little crying, and a page turned.

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Only a couple weeks later, he figured out how to stand up in the center of the room without pulling up on anything, and he was suddenly excited about walking. We walk into school together from the parking lot in the morning, and back out to the car in the afternoon. I hold his little hand and we move in literal baby steps. If I’m in a hurry and try to scoop him up, he protests, pointing to the floor and thrashing in my arms. He must walk, and stop to point out everything on the way. He bends to point out red squares in the tile floor. He points to the radio on the counter and signs for music. He yells DUCK and SHEESHEE at the seagull and fishies on the school mural, then shows me his fish face, says “mama?” and waits for me to do it back. Once we get outside, it’s CAR! Ight? Udda ight? As he points to a car’s two headlights. And if he turns and catches sight of the school’s name on the wall, he’ll waggle his music finger and say “ee-eh-geeee” to tell me there are letters there and I better start singing about it immediately.

Speaking of singing, every drive turns mama (or daddy) into a music player set on shuffle, as we try to figure out what his song of the day is. Wheels on the bus? No. ABCs? No. Sometimes he helps and gives us a hint – wiggling his fingers for the “shishy bishy” spider, or mumbling “uppabudda (world so high)” for Twinkle Twinkle. But mostly it’s trial and error with a music critic in the back seat yodeling nooOOOoooOOO after the first three notes of every wrong song, and giggling and clapping when we get it right. Then it’s “ah-hehn” because we need to do it again. And again. And again.

We have a similar issue with books, and it’s frustrating to have so many wonderful and beautiful books around that he just yells at and slams shut after the first page. He still loves reading. He races to the book bin to grab a favorite before backing into us to sit in our laps and read. But we’re down to about a dozen that he’ll actually tolerate all the way through. I thought I had the solution when I went to a consignment sale and bought other books in the same series as ones he’s really into, but he’s no idiot. It’s not that easy to trick a toddler, you guys. The first time he opened up a Pigeon book that didn’t start with the driver saying “Hey, Pigeon, why don’t you show me your happy face,” he gave me a withering glare, put his hands on his hips and said “anny” to show me he was just as angry as the pigeon who refuses to take orders from a bus driver.IMG_20160305_093627

His language has absolutely exploded lately. He understands so much that we’ve had to start being careful with important words. If we say “bath,” he’s at the stairs within seconds, yelling FAFF FAFF FAFF and trying to pull his shirt off. He likes repeating the names of family members, and he’s just figured out his own name: L’mm. It’s the cutest. About a week or two ago he started stringing two words together. First “uh-oh duck” to tell us the garden duck had fallen over, but soon after that he was doing “hi Daddy” when Dave walked into a room and “byebye Ah-mull” waving at the cat (Animal) on his way out the door to daycare. He uses “other” to make two-word phrases a whole lot now, too. While putting shoes on: udda feet? Taking his coat off: udda ahmm? Poking mama in the eyes: udda eye?

Taking turns is a huge right now. If I kiss him, he’ll immediately lean over towards Dave and say “Daddy? Daddy? Until Dave kisses him too. Then he’ll grab my shirt and yank me towards Dave saying “Mamadaddy. Mamadaddy,” insisting we kiss too. Same goes for high fives (yeah!) and fist bumps (boom!) – it’s not over until every permutation of the fists or palms present in the room has been tried. This includes self-fives. Toddler self-fives are super cute, folks.

Eating is still a struggle, with a very limited set of acceptable foods that seems to change without any good reason. This week’s huge hit has been pineapple, which he’s hated for months and will probably hate again by next week. I’m trying to be cool about it and not force foods on him, just have things available close by for him to try if he wants to. It’s working fairly well – he’s tasted garlic french fries, a cheeseburger, an italian sub, honey mustard dressing, an egg sandwich with pepperjack cheese, BBQ chicken pizza, and tortilla chips in the past week. And he voluntarily licked a spoon that had been dipped into a Chipotle carnitas burrito bowl. He spit all of it out, and the display of dislike involved weird hissing sounds and dramatic wiping of his tongue with his hand, but he’s at least tasting things.

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This post wouldn’t be honest if I didn’t write about the tantrums. Because those have started. It’s not horrible yet, but he’s definitely developing opinions and he’s sharing them. There’s a lot of general low-level whining when we can’t figure out what he wants when he’s pointing and babbling, but every few days something bigger takes over and he gets mad. He’s started to throw his toys in frustration and anger, and the silliest things set him off. I guess that’s just toddler life, but it’s weird to see our mellow little guy crying in frustration when we won’t let him ride his trike when it’s time to get in the car for daycare. Or when it’s time to go inside after a wagon ride. Or when he can’t play with a knife. Or can’t have a third serving of pound cake. He’s just learned to stomp his feet, too, so it’s about to get even more interesting.

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But it’s mostly still good times, overall. He still loves music and is very gentle when Dave hands him the ukulele to let him try it. He loves the real piano at Grandma and Pop’s, and also loves to take a tour of the wind-up music boxes in their living room so he can dance. He’s getting exposed to lots of different styles of music thanks mostly to Dave’s eclectic tastes, but for now Elmo singing the alphabet is still tops on his list.

As he’s growing up, he’s getting better at understanding instructions and interacting with us in more meaningful ways. He participates in getting dressed and undressed now, putting his arms in sleeves, pulling off socks, and naming body parts as he goes. He climbs the stairs on his own, and he loves throwing trash out (we’re still trying to teach him that not everything is trash). Our conversations actually communicate information in two directions now, and that blows my mind.

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I think the next few months are going to be wild. I’m looking forward to them.

*Originally posted as 22 months because I apparently can’t count. I keep this blog real, folks.

Cupid’s Undie Run – Freezing for a Cause

I don’t run. My attitude towards running is summed up by this Garfield cartoon:

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I also don’t love the cold, as anyone who’s ever been within whining distance of me in the winter will know all too well.

Despite these things, on Saturday, in sub-freezing temperatures, I will be running for charity at the Cupid’s Undie Run in Washington DC. Yes, “Undie Run” means that they encourage runners to brave the cold and run in Valentine’s-themed undies. It’s like a polar bear plunge, but without the frozen lake. Just the same questionable judgment and the same shivering bodies.

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Why run in the cold and risk frostbite patches on my cellulite? Because it’s a challenge. Because I want to stretch myself. And because I’m selfish.

You see, the one-mile run is in support of the Children’s Tumor Foundation, which raises money to fund research into and awareness of Neurofibromatosis, a potentially serious and sometimes fatal genetic disorder that affects up to 1 in every 3000 births.

Liam, my wonderful and adorable toddler, is that one in three thousand.

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He was diagnosed with Neurofibromatosis Type 1 (formerly called Von Recklinghausen’s disease) last summer, near his first birthday. He’s already had to go through sedation for three MRIs, and he’s on track for at least two more of those scans before his second birthday. He has tumors in his brain that need to be watched, because if they grow they could affect his eyesight… or worse. So far they’re stable and not causing any trouble, and we’re very, very grateful for that, but we’re doing scans every two months to be able to catch them right away if they change. Liam also gets regular physical therapy to help him catch up with the big physical milestones, because the low tone associated with NF1 means that his muscles have to put in more effort than the average kid to do the same work. He’s working very hard and he’s doing very well and we’re incredibly proud of him. He took his first independent steps just over a week ago, and we all cried a little.

He’s healthy and happy and just as nutty and exhausting as a normal toddler, and if you didn’t know about all this you likely wouldn’t even know there was anything going on under the surface. But this is a condition that will need monitoring for the rest of his life. And because the severity of NF1 varies so much from person to person, we don’t know what his future might hold. Raising money for this research is all I can do to try and improve the chances that even if the worst case scenarios come up, science will have a way to get him through them.

So I’m pulling on some bright underpants and running a mile in DC with a handful of wonderful friends, on a day the temperature won’t even break freezing. 

I’m not raising money for his big medical bills quite yet; so far it’s been expensive but manageable. But there are lots of kids out there who are living with NF1. Neurofibromatosis can cause nerve tumors in the brain or in the body, which can cause blindness or pain or other disability, and require surgery or chemotherapy. Those tumors often include small lumps called neurofibromas that can be seen on the skin, and those bumps can be off-putting to some, leaving people living with NF1 feeling isolated. Kids with NF1 are at greater risk than average for learning and processing disorders like ADHD and dyslexia.  The money I’m raising this week, by running in the cold in a goofy outfit, will help to fund research into these complications, maybe leading to better ways to prevent or manage them.

Please consider a donation to the Children’s Tumor foundation through the CTF website.

Learn more about NF, directly from the Children’s Tumor Foundation.

Wish me luck on Saturday. It’s going to be hell, but this little guy is worth it.

Update, February 2017: Thanks to everyone’s generous support, my team met its 2016 fundraising goal of $1500. I won’t be running this year, but I encourage everyone to toss a few dollars towards NF research, if they can spare it. 

Note: The link to the awesome heart-print boxers is an Amazon affiliate link. You can learn more about that here. 




Liam at 18 months

Liam is 18 months old today.

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There are so many new things to talk about, because the past six months have been full of changes for Liam. He’s at a new daycare with a bigger group of kids his own age, and he keeps coming home with new words he’s learned from his friends. The new environment is helping him grow, and his teachers genuinely care about him, nicknaming him “Lima Bean” and arguing over who gets to hold him at the morning drop-off.

He’s wearing 18-month clothes now and it’s so strange to see how grownup he looks when he’s wearing collared shirts and jeans and little sneakers. He just got a haircut and I swear I see a teenager under there. Especially when he’s ignoring me. I’m going to keep him in footie pajamas FOREVER so he’ll at least be my tiny sweet baby at night.

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We have a pretty good eater, who’s eager to master spoons and forks and feed himself without our help. Unfortunately, his picky phase has continued and there’s a lot he won’t touch. Sometimes it’s about taste, sometimes it’s texture, and sometimes it’s that he forgets he loves cheese. Acceptable and unacceptable foods change week to week, so I’ve learned it’s better to go back to the store for more grapes on a grapes-are-good week, rather than buying a huge bag of them and realizing grapes-are-gross week arrived somewhere around Tuesday afternoon. He’s not a fan of veggies at all, and he hates chicken, but I’m hoping it’s just the lack of molars that are making those foods harder to handle. Yet Goldfish crackers somehow go down just fine. Hmmmm.

Also acceptable: Ah-PUUUHs.

I still get some green (and orange) stuff in him by putting it into pancakes or omelets, or taking a hint from the multimillion-dollar snack-pouch industry and mixing veggie purees with a good dose of applesauce. He loves peanut butter (ba-buh!), meatballs (ba-baw!), and waffles (faffle!). Loves to ask for them, anyway, frantically signing “more” only to yell “ah-dah” and shove the highchair tray once I hand them over. Of course, if we take away the tray, he reaches out to stuff one more chunk of waffle in his grinning face. I suspect this is the start of the crazy toddler era. But he’s right in the middle of the chart for height and weight so far: 26 pounds at his last weigh-in. So at least he’s eating enough!

Liam’s favorite toys right now aren’t toys. Sorry, everyone who keeps buying him wonderful toys! I’m sure he’ll come around! For now, though, he’s obsessed with random household objects, going so far as to throw his first tantrum ever over the living room clock, which we refused to take off the wall for him to play with. He calls clocks ney-neys, he spots them everywhere, and he wants them ALL. It would be cute if it wasn’t vaguely unsettling. He can’t have clocks, but we do let him have his next-best love, the kitchen broom, because he yells BWOOO and reaches for it every time we walk past it, and that’s hard to say no to.

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BWOOO being used ow-kai (outside)

His housekeeping training will begin as soon as he’s steady on his feet, because I could use the help sweeping up all the faffle bits on the kitchen floor. He’s also into pots, hats, spoons, and putting things into containers and taking them back out again, over and over and over. He also likes balls (mostly for throwing or for container transfer), and any toy that makes music. Because he was better with signs than words for a while, we taught him a little finger-waggle as a sign for “music.” He uses it to ask for music, but now he also waves both his index fingers around, conducting an invisible orchestra, whenever music is playing.

He plays a lot of music, too, as long as you’re generous in your definition of music. He has a few rattles, some jingle bells, a “piano”, two tambourines, and a xylophone of his own, and he loves making a racket with them. I bought him a plastic recorder to add to his collection after seeing his delighted response to Dave playing the penny whistle and ocarina.

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He’ll sit there and tootle away on it (just the one note) and then hand it off to each of us in turn. He loves the music boxes and the piano at his grandparents’ house, and he’s mesmerized when Dave pulls out the guitar or ukulele. Some of my favorite moments of the past couple of months have been watching my husband and my son play music together.12305755_10156247484120521_2099042422_n

SO MANY BOOKS are being read in this house. We have at least a hundred, and I think we’ve been through them all a dozen times each. “Book” was one of his first words, and he’s constantly yanking books out of the bin in the play room and handing them to us for story time. His current favorites are books with baby pictures in them, and ones with textured illustrations to poke at (or lick, in the case of “smooth shiny water”). He’s starting to copy the hand movements I use when I read stories, like “up” or “pop” or “no-no.” That comes out when I read him his solar system book: he swoops his arms around to show me the rings around Saturn and lifts up his hands to demonstrate how BIIIIG Jupiter is. It’s just the best thing.

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He’s got maybe 25 recognizable words, a half dozen animal sounds, and a few signs, and it’s wonderful to be able to communicate with him. He’s just started to show interest in letters, or at least the ABC’s song, which he demands by tapping any page with an alphabet on it, and saying “aiy-cee! aiy-cee!” He understands a ton, and is starting to make connections on his own, which means we’ve had to start being careful with what we say around him. If we slip up and use the real words instead of “round freezer breads” or “ground meat spheres,” there will be hell to pay if we don’t deliver his beloved foods immediately. He knows what NO means and he delights in wagging his finger at himself and saying nooooo, nooooo, as he’s about to eat cat food, crawl down the stairs, or stuff magnets into the gaps of the baseboard heaters.

He’s a great kid. Learning fast, starting to make his own decisions and put ideas together, and testing his limits. The next few months are going to be exciting and challenging as he gets a handle on walking and learns to communicate, and we find out more about what sort of little person we’re helping through the world. We’re very grateful for the village we have around us: friends and family, near and far, in person and on the phone and on the computer. So many people care about our family and want to see Liam succeed, but also to see us succeed as parents. It means so much to us to have so much support. Thank you.

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It’s a Pooh Thing, You Wouldn’t Understand

I took a few hours out of my day to be with Liam for the Halloween parade at daycare today. I arrived early, half an hour before the big event, so I sat with him and the other kids in his class while the teachers caught them one by one to put their costumes on. The kids are all between one and two years old, so there was a lot of chasing and giggling and crying.

The first little boy to be dressed found himself stuffed into a Tigger costume that he wanted absolutely no part of, and he sat in the middle of the floor wailing and tugging at the scratchy orange velour. Of particular offense was the giant fluffy Tigger head that completely covered his own little head and was attached with a snap he couldn’t undo. As he continued to cry and strangle himself trying to behead his costume, I scooched a little closer to him, with Liam in my lap, and asked “Do you know what’s so wonderful about Tiggers?” He stopped crying and stared at me.

“It’s that Tiggers? They’re wonderful things.”

Blink. Tug.

“Their tops,” I poked his belly, “are made out of rubber!”

He stared at his belly.

“Their bottoms?” I wiggled his foot. “They’re made out of springs!”

He wiggled his feet.

“They’re trouncy pouncy flouncy bouncy,” I bounced.

“Fun fun fun fun fun!”

“The wonderful wonderful thing about Tiggers is you’re the only one! Yoooooooooou’re the only one!”

He applauded my effort and crawled off with Tigger’s head dangling around his neck.

Moon

This morning, when we left the house, the crescent moon was bright in the sky. I pointed it out to Liam.

“Moon. That’s the moon. Look. Up.”

And he looked up. And he SAW it. And he stared and stared and stared.

He didn’t try to say “moon,” and he didn’t point. He just stared, absorbing the moonlight through his shining eyes. We stood there for a minute, faces to the sky, and he never moved except for blinking. Looking up. Up up up and so far away.

As I turned around with him to get him into the car, he turned his head so he wouldn’t lose the moon.