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

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.