"The most wasted of all days is one without laughter." ~e e cummings

Sunday, December 31, 2017

ready for change

I'm an introvert. I'm social in good company, but prefer the quiet of home. I like structure. Routine. Predictability. I like comfy clothes and hot coffee. I like calm. If my entire life could exist in hygge-state, that would be just fine with me.

But, it turns out, I'm pretty adventurous, too. Maybe not in the ways of jumping out of airplanes or eating exotic meats, but as much as I like my structure and routine....I love a good, big change every now and again.

As a kid, I scratched my need-for-change itch by changing my bedroom. Because there was a new baby in the house every couple of years, my siblings and I did a semi-frequent bedroom shuffle. As one of the oldest kids, I was fortunate in having my own room from about middle school on. Every time we shuffled rooms, I'd pick out a new wallpaper or comforter...I'd arrange and rearrange my furniture in my new space. I liked the freshness of change.

When I was in college, I achieved change through self-expression and my appearance...I'd dye my hair, pierce an eyebrow, get a tattoo. Small acts of rebellion (against whom? Certainly not my parents who championed each new look...) that made me feel like I could defy the limits of the box I felt was closing in around me. (A kindergarten teacher with an eyebrow ring? Now THAT's different! Too bad I took the piercing out before my first student teaching placement. I was ready for that box, it turned out.)

After college, change was fast and easy....a new job, a new relationship, another new job, a new town, a new apartment, a wedding, a new house, another new house...then babies.

Once the babies came, change happened around me...I didn't have to go looking for it. Every few weeks or months a new milestone...a new stage of development. It was hard and beautiful and all-consuming and exhausting. For nearly a decade, I was so in the thick of change all the time that, when I finally came up for air a few years ago, I wanted nothing but stases.

And so, we settled into our routines. For the next few years, we didn't rock the boat. Smooth sailing, dead ahead, we stayed the course. We were comfortable...and happy.

In the summer of 2016, settled and comfy, we decided to make a big change. Sam quit his job to start his own financial advisory firm. A risk, yes, but a calculated one. Less a gamble than a dream realized, it was definitely the right thing to do. Sam was able to reclaim even more of that work-life balance we're all seeking, while at the same time build something of which he could honestly and truly be proud.

Looking back now, though, I see that one, big change as being the tipping point. It sits on the center of the timeline, before which was comfortable stases and after, a series of changes that would ultimately lead us to our next big adventure....

Shortly after the start of Sam's new business (summer 2016), it became clear that Trump was not just a sickening sideshow. He was actually a legitimate threat to our country and our democracy. (I didn't realize the extent to which he was also a threat to science, journalism, truth, and the entire freaking world.) I started to feel shaky...like everything I thought I new about this country and the people in it was wrong.

Then he actually won the election. (It still doesn't feel real.) The end of 2016 was a blur of fear and denial. I remember thinking, at this time last year, that I was just glad to be finished with 2016. That 2017 couldn't possibly be worse. I felt sure of this because I was convinced that his presidency wouldn't survive the year...surely he would be impeached by April.

But he wasn't.

2017 was hard. It was hard and heavy and full of heartbreak....mostly because of our dangerous and narcissistic president, but closer to home, too. Inside our circle of family and friends, there were hard medical diagnoses, lost jobs, broken relationships, the deaths of a mother/grandmother and a child, depression...anxiety...hopelessness. It's easy to look back on this year as one during which we worked so freaking hard but... for what?

Around September, when the full weight of 2017 was bearing down on my shoulders, I had a realization. What I needed, more than anything, was a lifestyle shift AWAY from more/bigger/faster (the American way), and toward slow, streamlined, simple. It was time to circle my wagons and to trim the excess that was cluttering my mind and my heart and my life.

Luckily, Sam had the same realization at the same time (we're lucky that the BIG changes seem to happen that way for us...). So, we decided to move. (A BIG change, made simpler by the fact that we'll stay in the same area...the kids will go to the same school, we'll still be just blocks away from my parents.) Our house will be a bit smaller, but not by much...we still use our house and its space really well...but we're completely getting rid of our yard. No more yard maintenance means more time spent on what and with whom we choose. There will be a small patch for Jake, but we'll mostly use our neighborhood's green spaces, trails, and sidewalks for outdoor recreation.

Making the decision to move was just the change I needed to end this year. The second we signed the contract with our builder (yes, we're building again...it's apparently what we do), I felt like I had shaken the burden of 2017 right off me. I was able to see the year in review for what it ALSO was.... 2017 was the year we FINALLY got some health questions answered. There were new babies and new marriages and exciting personal achievements. There was joy and kindness and love. A new passion for activism was lit and we realized we were so much stronger than we thought we could be. It was the year we found that complacency is dead....and that we, mere stay-at-home moms in a small town in Virginia, are a force to be reckoned with.

It was the year we woke up. And that's one change that will stick with me forever.

Lesson Learned:
I am SO ready for 2018. The year of the New House...I'm not sure what color we'll paint ours yet, but the one in Washington is DEFINITELY going to turn blue.

Saturday, October 21, 2017

The Magic of Harry Potter--A Birthday Party

My kids are lousy sleepers, and have been from birth. Two-thirds of them are lousy eaters. Three for three are emotional and dramatic and highly sensitive. They keep me up at night with my never-ending worry for their health, identities, and futures. I love them, as I told them tonight, even more than Lily loves Harry, but they're high maintenance little beasties. 

There is one thing, however, that has always come easy for us. I don't take it for granted (because I know it's a big one), but let me brag here just for a minute: my kids are Awesome Readers. Book lovers from birth. 

They're constantly with a book in hand, often stealing away to their bunks in the afternoon for some post-school free reading. They collect books like other kids collect sports memorabilia and their own personal library cards are among their most prized possessions (no late fees for kids!). As a book lover myself, this brings me endless joy. Especially, especially, when it was finally time for me to introduce my three best buds to the best of the best: Harry Potter.

I waited as long as I possibly could: Evan had just finished first grade when I read Harry Potter and the Sorcerer's Stone aloud to them. It was a hit, and we quickly moved on to book two. Halfway through the book, Max stopped me as I opened it one night. "I think we'd better stop," my sensitive little soul said to me. "I think I need to wait until I'm older to finish these books. They're...pretty intense." 

Evan couldn't have been more thrilled, as this meant that he was no longer beholden to family read alouds to finish the series. He tore through the rest of the seven books during the first half of second grade. He enjoyed them, but it wasn't the love affair that I had hoped it would be. He never wanted to just sit and discuss the intricacies and complexities of the Potterverse. He had no interest in dissecting Snape's ever-present and unrequited love for Lily. He didn't even want to commiserate over a shared revulsion to "that Umbridge woman," a character nearly as loathsome as Voldemort himself. 

I wondered if I gave the books to him too soon...but I don't think so. I think Evan just doesn't connect emotionally to books in the same way that I do...instead, Evan reads for information. He collects facts, organizes historical events, and commits specific details and figures to permanent memory. In order to have some meaty HP convos, I would need to wait for Max to catch up. 

And catch up he did...this summer. Max picked up book two right where we left off three summers ago. That was July 20th. By the end of September, he had torn through the series and was working his way through Fantastic Beasts and Where to Find Them and Tales of Beedle the Bard

Max was hooked. There were Harry Potter socks and tee shirts and wands. There were homemade spell books and hours and hours of magical pretend play. My brother's partner, David, gave Max (and Evan and Molly, too) his collection of hundreds of Harry Potter trading cards. Max studied every card until he knew every minute magical detail of dozens of characters, creatures, items, spells, and potions...then he re-read the books until he knew where and when in the storyline these creatures, items, spells, and potions appeared.

And then, my dream of dreams came true...Max asked for a Harry Potter birthday party.

Why, yes. Those are floating golden snitches over the party table!

I've said it before but this time I mean it: This was my very favorite birthday party to plan and throw, ever. 

We started, as one does, with a Sorting Hat ceremony.


I found these cute Sorting Hat Ceremony origami fortune tellers, which were perfect. Each witch or wizard hopped up on the stool, wore the special hat, and had their House selected by the very official origami fortune teller. Once everyone was sorted, the kids had a chance to fold their own Sorting Hat fortune teller to take home with them.

Next stop, obviously, was Ollivander's Wand Shop!


Uncle Will and David played the part of Ollivander(s) while Evan served as their apprentice. The Ollivanders asked each party guest, one at a time, a question....favorite animal, favorite food, etc. They would then present an official Ollivander's Wand Shop wand box, acquired on their trip to The Wizarding World of Harry Potter, which Evan had secretly filled with one of the wands we had made prior to the party. 


I'm so thankful to have so many brothers and sisters nearby on birthday party days. Will and David were the perfect Ollivander(s). I've heard from friends since the party who say the their kids are STILL talking about their "phoenix-feather wand" or wand "of the dragon heart string." 


To make the wands, I just covered bamboo chopsticks in a thin layer of mod podge in different designs...sometimes just on the tip, sometimes a swirl or stripes the length of the chopstick, then added glitter in various colors. Once dry, I applied more mod podge to keep the glitter from ending up all over my house. I found these awesome twisty chopsticks which really made them special.

After the Sorting Hat and Ollivander's Wand Shop, it was a choose-your-own-adventure kind of party.

The Owl Post


On mini parchments, kids could write a letter to their favorite Harry Potter character with quill pens that I MADE MYSELF! After writing their letters, the kids rolled their parchments, tied them with a red bow, and left them in the basket for Hedwig to deliver after the party.

Care of Magical Creatures

At this station, the kids had to feed Hagrid's very hungry dragons...


We had cardboard dragons from a game Max played a few years ago. We named each dragon after a dragon in the Harry Potter series, then assigned each dragon a favorite food color... the Chinese Fireball only eats RED HOT cherries, for example...and the Norwegian Ridgeback only eats ORANGE pumpkins.



The game was to try to toss the correct color pompom into each dragon's food bowl. This was a last minute addition, but one that the kids kept coming back to throughout the party.


Charms Lessons


I didn't get a picture of this one in action because it was complete pandemonium in the basement where this lesson took place....with their newly acquired wands and a plethora of ready and waiting balloons, the little wizards were free to practice the charm Wingardium Leviosa! (The levitating charm.) Let's just say there was more popping than levitating happening in this lesson (popping and then screaming because of the popping).

Make a Snitch


A simple, independent craft, the kids made golden snitches using these gold glitter foam balls and white feathers.

Spell Books


For this activity, each party guest was given a list of spells and charms and a Book of Spells. The spellbook contained situations in which you, a Hogwarts student, needed to use a particular spell or charm in order to successfully get through your day. Kids could use the list of spells and charms to find the correct magic words for each situation.


Some kids took this activity VERY seriously. It was hilarious to see the kids who would NOT leave this activity until the entire Book of Spells was complete...and checked for accuracy. 

Potions Class


To set the scene, Max filled glass jars and bottles with glitter and water, then labeled them with the  names of potions from the books (like Polyjuice Potion) or from his own imagination (like Fatigi Potion).

While they were waiting for the guided lesson portion of Potions Class, they could pretend to mix their own potion concoctions in the cauldron (which was a water bead sensory bin).


But the highlight of this station was the potions lesson, taught by none other than Luna Lovegood (Max's Aunt Emily). 


Three students at a time were instructed to place two scoops of crushed bezoar (baking soda) into their cauldrons, then tap their cauldrons twice with their wands before adding Doxy Tears (vinegar) to create their own unique potion. 


What the kids didn't know (and what made it magical...) was that before the kids got to the station, Professor Lovegood had secretly added a few drops of food coloring to each cauldron...a different color for each cauldron). The students added the same ingredients to their cauldrons, but each potion bubbled up a different color.

Pure magic.


When the witches and wizards grew hungry after their afternoon of magical lessons, it was time to come together in the Great Hall (decked out in the colors of Max's Hogwarts House, Ravenclaw).


Big thanks to our amazing neighbor for letting us borrow these perfectly authentic cast iron cauldrons for snacks!


The cake!



Notice the buttercream frosting (which is NOT homemade fondant). The glasses and lightning bolts are fondant...but of the store-bought variety. 


Lesson Learned:

I love, love, love Harry Potter. 
I love, love, love putting on birthday parties for my kids.
I love, love, love this 8-year old.

This party was one for the history books....


Pure magic.

Wednesday, October 11, 2017

8 is Great

Since he was four...maybe longer...Max has known that he will be a baker when he grows up. The name of his bakery will be "With Sprinkles on Top" and he'll live in the apartment above. He'll offer daily specials, to encourage new visitors to his shop, and free coffee on Saturday mornings, to keep his regulars coming back for more. His cousins, Olivia and Lauren, will be his bakery assistants and will help, especially, with the wedding cakes...which are kind of a lot of work, if you didn't already know.

He's got it all figured out.

(Because that's what Max does. He figures things out.)

The only potential hitch in his grand life plan, it seems, is me.

I've done well enough encouraging this dream of his...in theory. I've signed him up for Cake Camp the past two summers and I even bought him his very first cookbook. I've just done a wonderfully terrible job of allowing actual Baking Practice.

Maybe it's the fact that I'm not a huge baker myself.
Maybe it's the tired trope of the "busy mom of three" that just doesn't have the time.
Maybe it's my Type-A personality.

Whatever the reason, I've been forced to acknowledge the hard truth that I'm doing a lousy job of supporting my child's bakery-owner dreams in my constant quest for a clean kitchen.

With his birthday right around the corner, I decided to give him his first 8th Birthday gift last Saturday: the gift of an open kitchen.

"Hey, Max...whaddya say we start to get ready for your birthday party by making marshmallow fondant?"

It was as though the heavens opened and the angels began to sing. His already-twinkly eyes sparkled brighter than a star as he looked up from the Harry Potter book he was reading on the couch. "Now?" he asked, incredulous. "HERE?!"

"Yup! I've got everything we need...let me just pull up a quick recipe..."

"No!" he interjected, racing over to get between me and the computer. "I've got this! I know how to do this because we did it in Cake Camp! I'm an expert!"

I quieted the dissenting voice of reason and order and logic in my head and made the decision to just let go and trust him. We were using the very simple recipe of, basically, marshmallows and powdered sugar...what could go wrong?

Three minutes later, Max was covered to his elbows in sticky marshmallow fluff, a veritable cloud of powdered sugar was raining down All. Over. the kitchen, the mixing bowl was completely devoid of anything that even partially resembled usable fondant, and I was hyperventilating over the sink.

"Hey, bud?" [careful, deep breath] "this is why I suggested looking at a recipe. See? Just to make sure we got the proportions right?" [inhale. exhale. inhale. exhale.]

Delighted by the rich sensory experience he was currently immersed in, Max smiled sheepishly. "Sorry, Mom. Looks like I got a little carried away..."

He left to go clean himself up while I added a little water and a little more powdered sugar to the goopy disgusting mess left behind. A bit more melted marshmallow and a bit more powdered sugar later, the goop actually started to resemble fondant. Finally, I was able to knead the mess into a pretty neat ball, which tasted like fondant and will hopefully roll out like fondant when we attempt to put it on the cake in a few days.

I looked around at the mess while Max stole a taste and wrapped the fondant in plastic.

Counters, cabinets, the sink and a good 20 square feet of my kitchen floor were covered in varying concoctions of sugar and melted marshmallow. I had to use a spatula to scrape my countertops smooth and the floor is still a bit sticky, days and many washings later. As I cleaned, two voices argued in my head. The first, and loudest, wondered why I ever suggested this stupid messy experience in the first place. The second voice, however, is the one who had, throughout the fondant-making catastrophe, kept an eye on Max...instead of the mess.

Why can't I be more patient?
Why can't I just let go and be in-the-moment?
Why do I have to worry so much?

Why can't I be more like Max?


He's so amazing, this, as of today, EIGHT year old child of mine.

He's brave and confident and imaginative. He's creative and adventurous and FUN.

He's everything I'm not and, when I look at him and watch him do his thing, I'm equal parts mesmerized and bursting with pride.


Especially when that "thing" is belting Miley Cyrus while busting some serious moves.

There have been many times over the past few years when I've wanted a crystal ball...to peek, just for a second, into Max's future...to see where/how/who he becomes as he finds his way. I don't want that anymore. I want, now, to just enjoy this ride because I think he actually already has it all figured out.

Max is Max....and that's all you need to know.


How is it that my 8-year old has it more figured out than I do?

When in doubt, eat cake.


The other day, Max told me that a classmate, who is new to the school this year, asked whether he is a boy or a girl.

"How did you answer the question?" I asked.
"Well, I told her I'm neutral; not your average boy or girl."
"Yeah? Good for you buddy. How did she respond?"
"She said, 'Really?! You're my very first one I've ever met!' And now we're friends."

So that's that.


He's a good friend, that Max.

Max with the good hair.



Max with the good ideas.


Max with the good soul.


Max with the sensitive heart.


Max, my one in a million.

On this, your 8th birthday, my love, I wish for you a world in which you are always be greeted with the the same joyful enthusiasm your new classmate showed you. I wish for you a world in which you are given the freedom to express each and every magical, creative, messy, beautiful whim you dream up.

And I wish for you a more patient mama....

Lesson Learned:
This wasn't the first time I've indulged Max in his culinary whims. There was this time during Winter Break last year....


I was able to steer him away from the Steak-and-Kidney Pie and towards the cinnamon rolls, which was a win. After two days of mixing, rising, more mixing, rolling, topping, more rolling, more rising, baking, and finally...eating...I sold that stand mixer and decided that cinnamon rolls from a pop can are just fine, thankyouverymuch.

Max...
I can't wait until you're a baker. I can't wait until you have your own kitchen to play in (instead of mine). I'll be first in line for your daily specials and, baby, you know I'll be camping out all day on free coffee Saturdays.

BUT....I can wait until you're grown. Over the past year I've learned that I don't want to wish the time away and I don't even need to peek inside that crystal ball. It doesn't matter to me where/how/who you grow to be because I already know YOU. I know your heart and your soul and your spirit. You are Max...and Max is Max is Max. And Max is awesome.


Happy Birthday, to my very best Maxwell. We love you, kiddo.

Monday, August 7, 2017

when the news hits home

I've watched, with anxiety and sadness, as "bathroom bills" have been introduced and defended by people who fear, so hatefully, that which they do not know.

I've also watched business owners around the country and right here in my own little town take part in a quiet counter-protest: thoughtfully removing the His and Hers labels from their single stall restrooms and replacing them with clever signs like the ones adorning the restroom doors in my brother's restaurant: "Either" and "Or."

Or, maybe my personal favorite, this one...

Image result for whatever just wash your hands
Image credit: Redbubble

I knew it was important and I knew it might one day be personally important for my family...but I didn't think the impact of gendered bathrooms would be felt so soon.

It happened several weeks before I even knew it was happening: Max was noticing. He was noticing the "everybody bathrooms," as he calls them, and he was noticing the bathrooms for which he needed to make a choice. He was also noticing (whether real or projected) the curious looks he received when he made the choice that matched his gender identity (boy) but not his clothes. 

He started asking Sam or Evan to accompany him in to the bathroom or for me to wait right outside. He started to "just wait until we get home...it's not an emergency."

And that's when I finally noticed. I noticed that, as comfortable as he is in his own skin, as right as he is in his understanding and expression of self, he's not immune to the effects of a society as gendered as ours is. He is dealing with so much more every day than I give him credit for and, somehow, he is still, literally, the happiest, most joyful and creative child I have ever met.

Society hasn't taken that from him yet and I'll be damned if it does.

A few weeks ago, we were in my brother's restaurant. Max returned from the "Either" bathroom and said, "I just love how Uncle Mike has Everybody Bathrooms in his shop. Then no one has to wonder why you're in there! Everybody should have Everybody Bathrooms.... even schools."

And there it was. Second grade is the first year that the students do not have a single-stall "everybody bathroom" in their classroom. He had projected that, every time he needs to use the restroom, he will be running the risk of having to defend his right to be in the boys' room.

So, I asked him what we could do to solve the problem...because in the grand scheme of things bathrooms are a little deal. There's no sense worrying about a whole awesome school year over something as little as bathrooms.

Max didn't hesitate. "I want you to set up a meeting for me with Mr. C."

Leave it to Max to initiate a meeting with his Principal. Man, I love that kid.

Today was the meeting and it was fantastic.

After expressing his concerns to his Principal, Max explained that a reasonable solution to his problem would be an Everybody Bathroom. Mr. C first confirmed with Max that there hadn't been a situation that made Max feel unsafe in the building. He wanted to make sure that this was a proactive conversation rather than a response to something negative that had already taken place. Max assured him that no, he feels safe in the building, just uncomfortable in the boys' bathroom. 

Mr. C then proceeded to take us on a tour of the school, pointing out the FOUR Everybody Bathrooms in the building that Max, and anyone else, can use whenever they need to. No matter where Max is in the building during his school day, he has a single-stall Everybody Bathroom right at the end of the hall.

What a school. What an administrator. What a lucky mama I am to have landed here with my babes.

Both pleased with how the meeting went, Max and Mr. C shook hands and we left.

As soon as we got in the car, Max breathed a sigh of relief...and then released his inner diva:

"I just feel SO much better, Mommy! It's like, I was SO excited about second grade because some people say it's, like, their favorite grade E-VER...but then I was so nervous about the, ya know, bathroom situation. So now I'm, like, totally fine with everything and I'm, like, LIT-ER-A-LLY counting down the DAYS! ohmygosh...."

I smiled and said, "That's right, babe. Nothing to worry about. It's going to be a great year."

Lesson Learned:
Now that we have the bathroom situation under control, time to work on that valley girl sass. 

As soon as he stepped out of the car, he said, "And you know what else I'm sick of? When people ask if I'm a boy or a girl. From now on, when someone says, 'Max, are you a boy or a girl?' I'm gonna say...[cocks his hip, flips his wrist, struts his stuff]...Whatevs! I'm gender FLUID, baby."

I LIT-ER-A-LLY don't know where he gets it. I'm just so freaking glad he owns it.

Thursday, May 18, 2017

7 1/2

Seven and a half is killing me. He is absent-minded and easily distracted. Bedtime and before school are the worst...it takes fifteen reminders before he completes tasks like brushing his teeth or putting his pajamas on. And when, by the fifteenth reminder, I have raised my voice in order to be heard, he looks at me with shock and irritation and demands to know why I'm always yelling.

We've been here before...he is our second child, of course...the arguing, the negotiating, the debating every single word that comes out of my mouth...what's new this time around, though is the sass. MY GOD THE SASS!

The stomping, the eye-rolling, the slamming of doors, the sassy tone where vowels are stretched to multiple syllables and every word ends with an -uh..."But, Mo-o-o-mm-uh! Whyyyyyy-uh?! That is so unfaaaairr-uh!"

I can't take much more of this.

Luckily, we're in the downward slide into summer and a looser schedule and fewer stressors and obligations are on our horizon. That's got to help, right?

And luckily, because he's the one and only Max, it's not all bad. He's still quick with the snuggles (and the "I'm sorry"s), and sprinkled in with the sass and 'tude have been some classic Maxisms. I just love the way he lives his life and sees the world.

The other day, he was listening to music on an old iPhone we keep just for the music. We've finally started paying for Apple's streaming service so he can listen to unlimited music without purchasing every song he wants to listen to. We've probably saved hundreds of dollars and close to a billion GBs of storage.

He popped out his earbuds and brought the phone in to me in the kitchen.

"Mom," he said. "There's this Katie Perry song I want to listen to. Can you listen to it first so you can make sure it's appropriate?

I was impressed by this responsible choice. We're pretty lax with our music censorship...we allow our kids to listen to just about anything as long as it's "radio friendly." They know, though, that Apple music does allow songs "with that little 'E' next to it," so I appreciated his caution, and let him know so.

"Wow. Sure, bud. I appreciate you asking me to do that."

He handed me the phone and the song "E.T." was queued up. Because I'm super lame, I wasn't familiar with it, so I pushed play.

A few bars of a drum beat and crescendo and Katie begins: "You're. So. Hypno-tiz-ing..."

Annnnnndd, then Max joins in: "...could you be the devil, could you be an angel..."

He proceeded to sing along, hitting every word, key change, and staccato'ed syllable flawlessly..."Kiss me, k-k-kiss me..."

I just stared at him. He was really feeling the music. I didn't want to interrupt. When it was over, I asked, "So this, just now, was the first time you've ever heard this song?"

His eyes got huge. "Um. Well. To be honest, no. I've heard it before. I've listened to it a lot, in fact. I just listened to it three times in a row just now."

"Mmm-hmmm..." I said, smiling.

"And...well...the other day, when I asked you what an extra-terrestrial was....? It was because I had heard about it in this song."

"I see..." I said, before pushing play one more time and joining in for the choruses.

The best thing about 7-year olds is how terrible they are at lying.

***

On library day this week, Max was packing his library books in his backpack. For the second week in a row, he read an entire Wings of Fire chapter book in the seven days between check-out and due date.

"I can't believe I read the whole book before I had to return it," he gushed, so proud of his achievement.

"I know, bud! You really worked hard to make that happen."

"Well, yeah, but it's because I'm older now. I don't get bored reading a lot like I did in Kindergarten," he reasoned.

"You're also a stronger reader now than you were in Kindergarten," I answered.

He paused, thoughtful for a minute.

"You know how I lay on my belly in my bed to read? Like with my book on my pillow and my elbows are holding me up?"

"Yeah, I know what you mean. I used to read like that, too."

"Well, sometimes my arms and shoulders start to hurt. Is that the burn?"

"The burn?" I asked, confused.

"Yeah, the burn. You said I was a stronger reader now. Is that because I've been feeling the burn?"



And then I just LOL'ed all the live long day.

Lesson Learned:

This kid. Thank goodness for this kid. And thank goodness for the hilarity that comes out of his mouth that helps temper the rage I feel when he cocks his hip, crosses his arms across his chest, and rolls his eyes at me for the tenth time in a day. This dramatic diva drives me nutty...but oh, I love him so.

Sunday, May 7, 2017

an Answer

On Thursday afternoon, the House Republicans voted to dismantle our health care system. That very morning, we received the diagnosis we had been searching for, but narrowly avoiding, for the past year.

The diagnosis came just hours before 217 (predominantly) old, white men spitefully decided that being powerful was more important than being compassionate...and just days after Rep. Mo Brooks of Alabama defended charging more for preexisting conditions (and allowing insurance companies to deny coverage to people with them). He said that this allows insurers to reward “people who lead good lives,” insinuating, of course, that people with complex medical histories brought that trouble upon themselves.

I would like to invite Mr. Brooks to meet my 10-year old.

To the representative, he may be unworthy of compassion and care...fit to punish for his poor life choice of having received this diagnosis...but to me, Evan is like no one I've ever met. He is smart and sensitive. He is willful and can be defiantly independent. He has a tender heart and a moral compass that is straight and true. He loves to build with Lego and create fortresses on Minecraft. He is a newly-crowned Kickball King and still wants to be tucked in to bed at night. He has a passion for Facts and compassion for the young and the furry. He has plans of joining the military when he gets older but who also sees himself as a father; "Who wouldn't want kids?!" he's asked, incredulously.

On Thursday, we learned that Evan has Crohn's disease.

Crohn's is an inflammatory disease of the gastrointestinal system. Though it can go into remission and sufferers can have symptom-free periods, it's a chronic condition that cannot be cured, only managed.

He'll have it forever. For the rest of his life, Evan will need to take medicine, have frequent blood draws, and undergo regular scopes and MRIs to monitor his condition.

There are positives:

First and foremost, it's an Answer. An answer to the weight loss and the anemia, an answer to the "phantom fevers" that Evan seemingly could bring about by his own volition...he has a history of spiking fevers leading up to or at the conclusion of just about every holiday, trip, or special event. These were probably a result of the Crohn's inflammation, which can flare up under stress. It may even account for some of his food allergies. It's not the answer I was hoping for (Not gonna lie, "Oops! Our measurements have ALL been wrong ALL year! Evan is growing beautifully and his hemoglobin levels are excellent!" would have been nice.), but it's an Answer with a Plan.

Evan's Crohn's was caught early. (We are so unbelievably grateful for our persistent pediatrician and our pediatric gastroenterologist, who refused to take a wait and see approach when they saw that Evan's growth was restricted even after removing all suspected allergens from his diet. Crohn's can be a sneaky beast to catch, wreaking quiet havoc until extensive damage is done and it can no longer hide.) Because it was caught at such a young age, Evan should be able to make up for the weight he's lost and reach his full growth potential.

Also, the area of inflammation is relatively small, so we are able to start Evan's immunotherapy with an oral medication taken daily. If, after a year of blood draws and scopes, his inflammation is under control and he is able to gain weight, this will be our course of action until anything changes. If his inflammation rages up again or he continues to lose weight, we will alter course. He will then receive his immunotherapy through IV infusions every 8 weeks.

But first, oral steroids, to quiet his entire system so the immunotherapy drugs have a chance to work.

One of the many times I cried during Sam's and my consult with our PedsGI doc Thursday morning was when he mentioned "oral medication."

"Like a pill?!" I cried. "But he doesn't know how to swallow a pill! He still drinks his Children's Tylenol out of a tiny plastic cup!" (My mind still hadn't wrapped around the idea that this would be our New Normal. A pill or six a day. Every day. Forever.)

The doctor smiled warmly, reassuringly. "He'll learn," he said. "He can do this."

The doctor, yet again, was right.

That first night, Friday night, was rough. He needs a pretty high dose of steroids, so he has three pills to swallow, twice a day. He couldn't quite get the first one down so it melted on his tongue and stuck to the roof of his mouth. It was horribly bitter. There were tears, but there was determination.

"This time, give 'em both to me at once," he said. We did, and they went down easily.

Saturday morning, he took all three at once like a boss. Like he's been doing it forever.

Forever. That damn word.

We've been really open with him about what's going on. I've hidden my tears (nearly successfully, I think), but we've told him the truth. "Will I have this forever?" he asked. "Forever," I said. He cast his eyes downward and his chin quivered. I quickly went on: "But you won't feel bad forever. In fact, once we start these medicines, you'll probably feel better than you have ever felt before."

And we talked about how he's not alone. Lots of people in our life have chronic issues for which they take medicine regularly...forever. It's not their fault...their bodies just need a little extra help to work properly. "Aren't we lucky that we know what your body needs? Aren't we lucky that the doctors know just how to help?"

I said that last part for myself as much as for him.

We're so lucky.

F*ing Crohn's. But we're so lucky to know. He's going to be okay.

So long as the GOP doesn't ruin health care for us and everyone else.

Lesson Learned:
These last few days have been a whirlwind. I'm pretty sure I have experienced every stage of grief over a 24 hour period...in between making dinners, playing Pet Store, answering emails, scheduling field trips, prepping for a yard sale, and PTO meetings, of course. Life goes on. And so will we.

This kid amazes me on the regular...but through all the shit he's been through this past year...the endless doctor's appointments, the countless needle sticks, the scopes, the MRI (the barium contrast!), the diagnosis, the pills...he just handles it, and I've never been more proud of him.

It hasn't all been easy and there have been times that I have wanted to just put my head in the sand and ignore everything. But he keeps pushing through. I have every confidence that he's going to be able to handle everything Crohn's throws his way. He'll use the same defiant determination that has, at times, been the bane of our relationship and show Crohn's who's the boss of him. And he'll do it every day, Forever.

Wednesday, April 19, 2017

the kickball game

Molly and I arrived at school Friday afternoon to pick up the boys, like we always do. On that day, however, for the very first time, we would be bringing home a 10-year old. It was Evan's birthday.

We met Max first and together we walked to the front lobby to wait for our big boy. The bell rang and a stream of fourth- and fifth-graders flooded the hallways. After just a minute or so, I saw him as he rounded the corner. He looked different...bigger. A smile spread across his face as he caught my eye. It's not that he was just so happy to see me, his mama. No, it was something else. A sparkle in his eye, his chest puffed up a bit. It was joy, but it was also pride. I swear my little guy looked ten-feet tall walking towards us.

Before I could tousle his hair, sneak a top-of-the-head kiss, and say "happy birthday," he began:

"Picture this," he said, as we three listeners stood rapt, ignoring the swell of the crowd around us.

"This afternoon. Bonus recess. Kickball game. We're down by three, 13-10, and we're kicking. It's the last up of the game, 'cause Ms. G had just given us the warning to finish up. So I get up to kick. As soon as they see that it's me coming up to kick, all the kids on the other team in the outfield come in real close. Probably because they know I usually don't kick it really far...."

[I have to stop myself from reacting to this. This is Truth, provided without emotion or self-consciousness. It is merely a logical description of Fact, from my very logical kid.]

He continues without missing a beat:

"So the ball's coming toward me and as soon as I kick it, I know it's awesome. It goes sailing. Over. Their. Heads. and WAY out into the outfield. I start running. Man on third gets home. Man on second gets home. Mason's rounding to third and they try to peg him out but the ball misses him by, like, thismuch. Mason gets home. I'm still running. I GET HOME. It was an INSIDE THE PARK GRAND SLAM HOME RUN. And I helped my team win the game!"

You know I started to cry. Right there in the freaking lobby of my kids' school, I teared up over a freaking kickball game. As Max high-fived him and exclaimed, "OHMYGOSH, Evan!! Good job, bro!" I hugged my game-winning 10-year old tight and he didn't protest.

We talked about it the whole way home. We talked about it again when Sam got home from work. I could hear that kid of mine tell that story 100 times and it would make me tear up every time. Evan, the MVP.

When Evan's Destination Imagination team won 1st Place in the State tournament a few weeks ago, I realized that, for a kid like Evan, who has never played team sports, the biggest thing he's missed out on is the feeling of a Team Win (and yes, a Team Loss). He's had plenty of time and space to develop a lot of the other skills that are so fundamental to playing organized sports, but never that feeling of Collective Victory. DI was great for Evan for a number of reasons, but those 1st place medals that he earned together with his teammates were among the top of the top.

Friday's kickball win made me feel so similar to his DI team win....He was proud of his accomplishments, yes, but he knew that it wasn't he alone who won the game. The beauty of teamwork is that, win or lose, you're in it together. But, damn. I'm so happy my kid got to experience what it feels like to Win.

Lesson Learned:

The icing on the proverbial cake is that, when kids started arriving for Evan's party later that evening, two of the moms said to me, "I heard all about Evan's big kickball game today!" The boys went home and TOLD THEIR MOMS about something awesome my kid did WITH A BALL. ON A FIELD.

A birthday miracle, indeed.