I believe we are into week three with our medication trial for Edward, and I had to quote verbatim from the marketing materials for the title of this post! My husband and I have had so much fun mocking the pamphlets and checklists provided by this pharmaceutical company. I’ve never seen such complicated marketing packets and reminder stickers–all in soothing beach-tone colors of blue and light tan.
The medication promises “manageable mornings,” “assignments accomplished,” and “drama-free dinnertime.” The materials encourage us to “notice the little changes, write them down and celebrate the improvements.” There are photographs of a little boy enjoying board games with his sister while his parents smile adoringly. He smiles ingratiatingly at his mother as she prepares his breakfast, his backpack packed and jacket already on–clearly ready for a productive day at school.
We’ve been running around the house for the past three weeks occasionally lapsing into a faux reverie where we claim to be “imagining the moments ahead” when Edward will not interrupt me while I’m talking with a doctor to tell me that hedgehogs are extremely prone to cancer, or when he will actually remember all of his homework materials so I do not have to bribe a custodian to allow me entrance into the school to retrieve them every other day.
All sarcasm aside, we have seen a certain amount of calming in hyperactivity with the use of a very small dose of this medication. Specifically where we used to witness loud, screaming tantrums when the soccer team lost, we now see quiet sobbing. Where once we experienced shrieking and wailing at the threat of turning off a video game, we might see a fist pounded quietly into the carpet and a wry face, but otherwise a rather mild reaction.
It reminds me fondly of a Temple Grandin talk I went to last Spring where she spoke about gifted software developers with Aspergers who would quietly retreat to their cubicle when upset or overwhelmed. Her point was that they had learned how to manage their emotions in a socially appropriate way. I suppose I see this medication helping Edward do just that, and my hope is that this new reaction to adversity will become more ingrained for him and therefore a part of his coping skills.
In the meantime, I will continue my quiet reveries…
Sorry I’ve been absent for so many days. Just over here imagining the moments ahead….and oh, the moments we’ve had!
Apparently third grade is a grade of projects done in the home. With no further adieu, I bring you the glorious, the spectacular,
BUTTER PAT EYE PIG!
This project is designed to teach proper placement of the continents which renders unfortunate Antarctica as a blue pig scrotum.
Edward told me about this project just as we were going to bed the night before it was due, so he hastily colored the continents and placed them in their respective spots on this pig friend.
Does anyone else find the eyes somewhat creepy? Do you find his smile authentic, or is something far more sinister going on here?
(Mrs. Bear might even find him a tad zombified.)
So the rest of the story finds E running out the door the next morning, gluten-free bagel in hand, casually dripping a swathe of butter right onto the pig’s eye since the all-important project was left in the middle of the kitchen floor. Edward casually wipes off the butter, scoops up the pig, who now boasts a rather rheumy, glowing eye, and runs off to school.
Imagine my horror upon opening his backpack later that afternoon to find the pig crammed inside!
“I did not put him in there! I promise I turned him in!!” a frightened Edward screams.
“Look at his eyes,” Sue chants, “Just look at those eyes!”
At this point, I’m rather miffed. I do not like to be part of continent pig projects period, much less at 8:45 at night only to have them not turned in. Still, Edward swears he has no knowledge of how the pig got back in his backpack.
And I believe him.
Yesterday we had a 9:45 appointment at the dermatologist–oh the joy! Remember last time?
A similar “dermatology TV show” was playing, only this time the topic was acne. The waiting room was packed with mostly elderly folks.
Here’s a small sampling from Edward: “What is a period? Is it the same as the one at the end of a sentence? It makes no sense that a period would cause you to have these bumps on your face…are these bumps the ‘acne?’ Do you have acne, Mom? Do you think I ever will? Tell me about this menopause…what is that?” A sweet older lady sitting close by chuckles and looks at me expectingly.
I sort of squirm in my seat, and slowly reply,”Well, it’s a sort of change in a person’s life…a change in the body.”
Edward is clearly unsatisfied with the vague nature of my response: “What kind of change? Whose body is changing? Why does menopause give a person acne?”
Lucky for me the “dermatology TV” switches at this point to a game-show type quiz. Edward begins playing this with a man sitting close by. The question is, “Which item is not required to be listed on food packaging ingredients? Fiber, Artificial Flavors, Artificial Colors or Caffeine.”
The patient man and I both call out “fiber!” Edward, however, shakes his head at us. “It’s caffeine, people! Caffeine is the answer!” The man and I exchange doubtful looks. And then the answer shines forth: “See! It’s caffeine. I told you!” Edward chortles gleefully. The man addresses Edward, “Boy, I need to take you to Vegas. You’ve got winning in ya!”
Yes, Vegas! What a perfect place for Edward!
At this point, he’s finished with “dermatology TV” and rushes up to the receptionist before I can really grab him, and asks, “What does ‘D’ mean in Roman numerals? My mommy doesn’t know…” Lucky for us, our name is now called and we rush to the back, Edward rumbling on about what “X” and “L” and “V” mean as I encourage him down the hall.
Joseph has a few small warts on his knee, and we are here to have those removed. Our doctor, who is also a personal friend, tells Joseph he can choose between the painful “freezing” or something called “blistering beetle juice,” guaranteed to be pain-free.
Naturally he chooses the “beetle juice,” and Edward perks up from his Diji hand-held game at the mention of “beetle.” Thankfully, it’s a fast-application and we’re out in the waiting room before we can blink an eye, the beetle juice topic well at hand. “Do you think that lady is going to have the beetle juice put on her hand? What about that man over there? Will he need beetle juice or something for his acne…”
And with that, we are out the door, into the sunshine, shuffled in the van. I put them both in the van and close the door, lingering a few moments to enjoy the sunshine and brief parking lot solitude.
Just in case you are curious, here’s the beetle:
Thanks to Austin and Elise who had the photo!
In another odd twist, this beetle is also the source for “Spanish Fly!”
Wonders never cease…
I was sitting in the kitchen with my coffee yesterday, having a rare quiet moment, when I heard the tell-tale “ka-chump-wump” followed by a searing screel. Edward shot in the kitchen, both hands clamped down firmly over his mouth, and began hopping up and down frantically.
I threw out my trademarked, “What-on-earth-happened-haven’t-I-told-you-all-not-to-run-in-the-house-why-can’t-you-all-just!” only to watch Edward open his mouth and emit a large pool of bloody gruel. Then, as fast as he opened it, he closes that mouth and, through bloody spittle, wails, “Ma teef! Ma teef! I think they’re gone!”
I jump down to his level, not too terribly panicked because I’ve dealt his 27 other bloody lips, a major tongue laceration, a torn frenulum, etc.
“You’ve got to let mama look!” I implore. “I’ve got to see what’s going on! I’m sure they’re not all gone!”
Then he begins this wild bloody spitting while hopping, clasping his mouth and moaning, “Ma mouf! Ma mouf!” Sophie, our five-month-old Boston terrier puppy, hurries over in some sort of blood lust and lunges at the collecting pools.
It’s hard to see what is actually going on, what with the hopping and spitting and such, but I do discern the absence of one big tooth and two cuts on the lips. I relax. We can handle this. The tooth was slightly loose, and, as I’ve explained before, he’s an early puller anyway.
Joseph and Sue finally run in breathlessly, feigning an air of concerned innocence. “We were, uh, playing and then he fell and I…”
I’ve seen this action before. “You were wrestling, weren’t you?”
“Yes, well, sort of. And my knee kind of knocked against his mouth and sort of, well…I think I might have knocked out some teeth.”
This comment brings Edward to certain level of acceptance and then a fresh concern, “OK but where’s my toof! Where is the toof! Don’t let it be like last time!”
Now I start to worry slightly that he’s actually swallowed the tooth.
“Joseph–run man! Go find that tooth!”
Joseph rushes away and is gone for a few long moments. I apply ice to the toothless mouth, sop up the floor and the child, and attempt a general calm-down. Joseph finally returns, a triumphant look on his face.
“I found it, I found it! It was stuck to the couch.”
Yes, well, that does make sense…
I settle Edward down with an organic high fructose corn syrup-free lemon ice to stop the bleeding, and we bag that tooth for the tooth fairy. Not two seconds after I have him settled, Sue runs in the kitchen, a crazed look on her face, her tiny deft fingers clutching something small and white.
“A tooth! A tooth! I found another tooth, Mama!”
Curled in her tiny palm is what, to the untrained canine dentistry eye, looks like a small, white puppy molar.
Joseph immediately begins to calculate: “Mom, do you think the tooth fairy can tell the difference between a child’s tooth and a dog tooth? I mean, do you think if we put that tooth under his pillow she would bring double the money?”
(Remember, this is a lad who rents wooden bats to naive friends at baseball camp, sells official “tadpole water,” trades worthless McDonald’s trinkets for $5.00 Bakugans, and generally considers himself some sort of Donald Trump of the nine-year-old set.)
“Well, I feel certain the tooth fairy is well-acquainted with the difference between human and canine teeth, but more importantly, do you think it would be honest to try to trick the tooth fairy into leaving something nobody deserves?”
Joseph looks down sheepishly…lesson learned.
And then everyone wants me to take pictures of their mouths!
Every year beginning when I was three, my mother and grandmother would take me to the Nutcracker. I grew up in Nashville, TN, and the ballet there was lovely and quite established. I would dress in my best Christmas dress, tights and patent leather shoes.
One year, I even had a tiny white fur muff with matching hat. I supposed looking back, this tradition meant a great deal more to me than I realized at the time. I have mourned its passing each year since I left for college, and then later when my grandmother died right before my wedding day.
This year, however, in a sort of unexpected blessing, the tradition was rekindled with my tiny Sue who is finally three. She’s old enough so sit through a ballet without wailing, talking incessantly or needing to nurse. Right before my eyes, God has transformed her from a chubby, bouncing toddler in to a tender-hearted, long-legged, inquisitive little girl.
I have written before about my pregnancy with Sue, and how, after two miscarriages, I longed for a healthy baby with a fervency I’d never felt before. I have many dear friends who have battled infertility for countless years. Some have ended their struggle with a biological child, and others with the grand blessing of adoption. I certainly cannot imagine those kinds of struggles, but I am certain that in loaning us Sue for a short time, God gave us His best.
So yesterday, when God blessed me with the chance to take my own smallish girl to the ballet, I relished in the event. I tried to capture many moments in my mind and in my heart.
Here she is waiting in great anticipation for the ballet to begin.
She sat riveted to her seat, mesmerized by the music and the dance. When we got up for intermission, she was worried that the ballet was over. When we came back after getting our candy and taking a potty break, she exclaimed, “Oh goody! We get to see it again!”
“Mama, I want to be there, on that stage, with them. I want to be there dancing with them. Can I be, Mama, can I do it?”
“Absolutely, sweetheart, absolutely.”
It was a lovely, cool evening. We had a few moments to spare before Joseph’s last football game. So, we were walking, hand in hand…ended up at the swings…enjoyed this touching moment…
A few minutes later she sat in my lap, bundled under my coat, enjoying a box of left-over Halloween candy Nerds. Lemon flavored to be exact.
And then she shoved a relatively large one up her nose.
Reflect that the candy coating of a nerd renders the treat somewhat smooth initially. As it is broken down, however, in the nasal cavity, the true sugar crystals are revealed.
We all know crystals are not smooth.
Lots of hawking and screeling and snorting in the packed football stands.
We ended up retreating to the squatty potty where, with much huffing and straining, the errant Nerd was excised.
“I’ll not put Nerds in my nose again, Mama. I’ll not do it.”
Through a prayer chain at church almost two years ago, I heard about a dear 3-year-old name Chloe who had been diagnosed with stage IV neuroblastoma, an insidious form of childhood cancer. She lived near me, I found out, and I soon learned we had mutual friends.
I began to follow Chloe’s story via email updates. I prayed for her. I thanked God that I wasn’t in her parents’ shoes. I marveled at her mother who amidst all this chaos, still managed to homeschool. At every pediatric well visit when no lumps were found in my own children, I was a bit more thankful than I might ordinarily be.
I thought about calling to see if I could make a casserole or deliver something. I thought about emailing or sending a note. I thought about doing a lot of things.
But I did nothing.
During May of 2007, my best friend, who designs her own line of invitations called Prints Charming, invited me to help her at the New York Stationery Show. I jumped at the chance. I was desperate to get away.
When it came time to leave, I hopped in the airport shuttle bus, still feeling a bit nervous about leaving my three for the first time ever, slid over on the bench seat, and started to cry. I cried because I felt selfish and guilty for leaving everyone. I cried because I was abandoning my still-nursing toddler for a week. I cried because I wanted to go to New York and feel like someone important for a change. In truth, I wanted a break from my life, and maybe for more than just one week.
As I sat there with tears dripping into my purse, I felt someone slide over the seat next to me. I got myself together enough to glance over at this person and she greeted with an inviting smile. That’s when I noticed the large button on her sweater. I froze.
“That’s Chole! I know Chloe! I pray for Chloe!” I cried.
“I’m Chloe’s grandmother,” the woman replied.
For me, a special intimacy develops when I read a person’s writing day after day, month after month. It was the strangest feeling to finally meet this person. There were so many days when I would be having my own private pity party but I would read those email posts and have my vision completely re-focused. So many times the verses quoted in Nana Becky’s emails were verses I had just read that same day…verses God wanted to make sure I had truly heard.
I knew God had put us together on this shuttle bus, at this exact moment, for some reason. But I didn’t know why.
“You’re Nana Becky? You’re the author of all those email updates?”
I learned that Nana Becky was headed to New York on an incredibly expensive last-minute ticket to help her daughter who had been with Chloe in New York for weeks and, understandably, was simply spent emotionally and spiritually. She knew what her daughter needed, and she was determined to be there for her.
Nana Becky and I visited during the two hours to the airport. I shared notes I had taken during a recent Beth Moore conference where Beth discussed James 1:12–persevering during life’s most fiery trials. Here was a woman, her daughter and granddaughter (and entire family) who were living this verse every day of their lives, and doing so with such a fierce, victorious spirit.
When it was finally time for Nana Becky to leave the bus, we hugged like long-lost mother and daughter. As I watched her drag her luggage toward check-in, I began to feel unusually grateful.
So that was over a year ago. I have prayed for Chloe and Nana Becky, and I have tried to stay current with the latest medical updates. Still there were times when my own burdens grew so heavy, I couldn’t open those emails. I didn’t think I had the energy to be fully part of Chloe’s battle. I never stopped to realize that energy wasn’t supposed to come from me anyway.
Fast-forward to today. After meeting Sue’s preschool teacher, we decided to have lunch and play in the large, outdoor, fenced Burger King near her school. After I got everyone settled, Edward a coffee lid full of ketchup and a hamburger patty, I glanced up at the bridge to the playground. And standing there surveying the scene was a little girl with gleaming brown eyes and a sprinkling of hair. My heart jumped.
It was Chloe.
A few minutes later, Nana Becky headed over to the table next to me, her arms laden with trays of food. I rushed over to her. I hugged her like she was my long-lost mother. I’m sure she was a little shocked, although she acted as if it was the most natural kind of behavior for someone to have in a Burger King playground.
I could tell Nana Becky was enjoying the children and the day, but I could tell she was heavily burdened. She asked me if I was still homeschooling. As I answered “yes,” a combination of fear and slight dread trickled down my spine as I thought about the year ahead.
She then told me that since her daughter would be spending two weeks out of the next several months in New York for Chloe’s treaments, there was no way she could homeschool this year. The other children would be starting school this Monday.
It wasn’t their first choice; it was their only choice.
Almost the entire time Nana Becky sat there, her cell phone in hand, she was obviously involved in serious phone conversations regarding Chloe’s next round of treatments in New York. Every few moments, she would put down the phone, look out over the playground at Chloe, who was playing happily, and I’m sure say a silent prayer of thanks for this day.
One day of normal. One day that most people would never even think about as being anything remarkable. One day that some mamas (like me) would complain about later. (Oh, Burger King again. If I have to eat one more hamburger and listen to them fight over those stupid Kid’s Meal toys.)
Just as I was about to leave, I felt this overwhelming pressure to say one more thing to Nana Becky: “Would it be OK for me to write about Chloe, put her picture on my blog, and ask people to pray for her?” Nana Becky’s eyes got misty, “Yes, yes please do that. And please pray. She needs those prayers…now more than ever.”
During the last two years, Chloe has been through major kidney surgery, 7 rounds of chemotherapy and 2 stem cell transplants. The treatment she begins next week, 3F8, is described as the most painful yet.
I’m taking up my sword this time.
Would you please pray for Chloe, too?
I’ll end this post the same way Nana Becky ends all of hers:
“Chloe will live and not die, she will tell of the works of the Lord.” Psalms 118:17
If you would like to read more about Chloe, please visit Nana Becky’s Care Pages and search for PrincessChloe. Thank you.