Twas Brillig

Hi. It’s me. Remember me? That girl who used to blog every day? That girl whose blog people used to read? That girl who used to read other people’s blogs? Ahhh, you’re beginning to remember.

I have a confession: I’ve been hiding from you. Yes, you. And you. And you. I’ve signed out of IM, I haven’t touched my email (even in a few cases where I was in the middle of a “conversation” with people, who were never offered an explanation for my dropping off the face of the earth), I haven’t visited cre8buzz, I hadn’t even deleted my thousand or so spam comments on my blog until just a few minutes ago. (Thanks, spammers, by the way. I wouldn’t have had any new comments without you…)

You’re not the enemy, of course. I know that. My hiding out is more of a coping mechanism for the insanity that my life has become over the last few weeks. There’s no end in site—in fact, if anything, the insanity is just about to get more insane.

When I signed on to my computer today, I had a handful of emails from you guys, asking me specifically how my little boy is doing. Thank you so much for your concern. I was avoiding talking about it, because I didn’t want every post to be about my sickly child. But hey, you asked. So here goes. Let the dump-session commence…

Today is the first day in over a week that I’m not rushing Fuzzles to the doctor, the hospital, or therapy of some kind. He’s been tested for everything under the sun— allergies, thyroid disorders, celiac disease, and even cystic fibrosis. That’s a lot of needles, a lot of labs, a lot of negative results. Don’t get me wrong—I’m glad the results are negative. But it doesn’t answer the questions. My son is perpetually sick. He hasn’t gained weight in nearly six months. He is “failing to thrive.” And no one has any idea why.

Finally we were referred to the gastro-intestinal department at Primary Children’s Hospital in Salt Lake City, but when I called to schedule an appointment, I learned that they won’t be able to squeeze him in until May.

Um… hi. May? Isn’t that a little far away? And that would be when they would begin their evaluations, not when they would actually have figured something out. Despite my impassioned pleas and explanations that my baby needs help right now, they wouldn’t budge.

Do you hear that sound? That’s me… pulling my hair out. By the fistfuls.

Did I also mention that Fuzzles has strep? But not in his throat, because that would be far too mundane for my little guy. No, he has strep on his BUM. Yup. This is excrutiating on his sensitive little hiney. Poor kid. Just one more thing to deal with.

Of course, none of this scratches the surface of his biggest problems, which are mental. The results of an evaluation of his mental development came in this week. It was shocking. I guess maybe I go into denial in between doctor’s appointments or something, because I start to convince myself that he’s really not all that behind. This evaluation says differently, and as I read through it, I could only agree with it. It shows that he ranks “very low” and that he falls into the 1st percentile (50th, of course, being “average”). In some areas of mental development, he is functioning at a three month old level.

My 17 month old son is the size of a nine month old and is mentally functioning as a three month old. And no one has any idea why, and no one has any answers for us.

But, fortunately, there is therapy, which we began yesterday. It’s a bit overwhelming, really, and it’s going to be a lot of work, diligence, and time. And that’s okay. I’m willing to do it, and I’m grateful for those who are trained and willing to help us.

He also has a screening set up at Primary Children’s Hospital for autism which is, of course, what everyone thinks (whether or not they say it) is going on here (though it clearly doesn’t explain a lot of his physical ailments). Unfortunately, he’s not eligible for this screening until he’s walking on his own. And, um, part of his developmental issues include lack of motor skills— meaning that one of his symptoms is that he can’t walk. And yet he has to be able to walk in order to take a test that will help to explain why he can’t walk.

Um…

In the meantime, my baby is the most gorgeous creature that ever lived. He is so happy and smiley and sweet. Whatever else he may be lacking, his sense of humor is perfectly in tact. His gigantic blue eyes will melt your heart, and his mad-scientist hair will make you giggle.

I want to make it clear that I am so grateful for this little person in my life. This is probably the most difficult thing I’ve ever been through in my life, but only because I hate that his life has to be so difficult. But Fuzzles is special, he is perfect. And I’m the luckiest mama in the world to have him as my own. And I will do anything in my power, limited as it is, to make his life the very best it can be.

There’s more here, more that I haven’t figured out how to put into words yet. Things that are completely illogical and irrational. Things about guilt, faith, love, hurt. My nerves are raw and my mind is spinning all the time. My older children have to make sacrifices too in all of this, and while they actually seem okay with that, I hate the unfairness of it. It makes me feel incredibly guilty, as though I were picking Fuzzles as my “favorite” and the other three just have to fend for themselves, because they only have what’s left of their mother after Fuzzles gets the lion’s share. That’s not the truth, of course, and again, it’s totally irrational, but it doesn’t matter. I know this isn’t making any sense, which is why I wasn’t going to talk about it and why I’m now going to stop talking about it until I’ve begun to unravel it in my own mind…

So there it is. My update. Thanks for letting me dump it all out. Maybe now I can come out of hiding. As soon as I catch my breath…

This post is my piece for Jen’s awesome writing game. Also cross-posted at the new official writing game website, where you will find all of the participants’ posts. The idea is that we all contribute a story idea, along with more detailed character descriptions plus a twist/conflict. Then, we are randomly assigned someone else’s ideas, and we write our own story. See Jen’s brilliant blog, A2EatWrite for more details.

My assignment was submitted by my dear friend Jenn in Holland and was as follows:

Story idea:

Long time, committed couple living, working, creating in ______________.

Characters:

Jade- artist, passionate, embraces life, quirky

Sam-professional, detail oriented, grounded, analytical, bright.

Dr. Branson- uh, yeah, the doctor

conflict:

Jade gets diagnosis of a terminal disease.

*********************************************

Emma Branson reprimanded herself as she realized that she was primping more than necessary before her hospital shift. Sam wasn’t going to be there to see her, after all. But it didn’t matter, she couldn’t stop. Just thinking his name made her heart flutter, and she couldn’t help but scrutinize her face one last time before grabbing her keys and heading out the door.

Emma absently attended to her morning rounds, keeping a close eye on her watch. Finally it was 12:30—Sam would have arrived by now. He always cleared his lunch hour on Thursdays to be at the hospital. Berating herself, realizing that she’d purposefully held off on checking in on room 432 until she knew Sam would be there, Emma headed down the hallway. She paused as she reached to open the door. “Keep it professional, Dr. Branson,” she whispered to herself. She put on her thick-rimmed glasses, as though they would remind her to be the doctor, and not the woman in love.

These feelings that she had for Sam were completely inappropriate, especially considering that Sam’s longtime girlfriend, Jade, was Emma’s patient. Jade had melanoma, and by the time she had been diagnosed, the cancer had spread to her lymphatic system. Even though Jade was only 29 years old, there was no stopping the cancer now. Bit by bit, Jade’s body was shutting down. She only had a few weeks left, if that. It was Emma’s job to make sure Jade was as comfortable as possible through these last days.

Emma walked into the room, and was greeted with the unmistakable smell of nail polish. “Purple today?” Emma couldn’t help but smile.

Sam glanced up from his attempt at a pedicure and said, with a grin, “yes, alternated with green. She was very specific today.”

These days, Jade was heavily sedated and often unconscious. Emma looked at the limp body, realizing that Jade wasn’t even aware of them right now. But when she woke up, she would see Sam’s labor of love on her toes.

Emma tried to picture what this odd couple had been like together. She felt like she knew Sam well by now— he’d spent hours here every week for the last six months. He was young, 30 years old maybe, fun and had a great sense of humor, but mostly he was very business-like: responsible, professional, analytical. From all evidence, Jade was the opposite— artistic, passionate, quirky. Both had obviously had to compromise, but they also seemed to embrace their differences. Emma realized that part of the reason that she admired Sam so much was because here he was, an important and dedicated lawyer, who made time every Thursday to come and paint Jade’s toenails. It was his love and respect for this free-spirited woman that Emma found so very attractive.

Emma cleared her throat, as though that would clear her thoughts, and moved towards Jade to do a simple examination, listening with her stethoscope to Jade’s heart and lungs. “Has she been awake at all since you got here?” she asked Sam.

“Just long enough to instruct me on her toenail polish.” He smiled sadly. “It won’t be long now, will it.” It was more of a statement than a question.

“No, it won’t be long. Have you made all of the arrangements?” Emma asked quietly.

“She made them. I think she was afraid that I would make it too boring. She was probably right.” He laughed. “For instance, she’s already made up the invitations for the funeral, leaving a blank space for me to fill in with the date and time. She wants her funeral to have a Hawaiian theme. All of the guests have to wear Hawaiian shirts and tourist-length shorts, though the women can wear mumus if they prefer. There will be a luau complete with hula dancers and ukulele music and a roasting pig, though the pig will be made of tofu, of course.”

“Of course.” Emma giggled. She couldn’t picture Sam in anything but his perfectly pressed suit and starched shirt, carrying his briefcase full of important corporate law documents. A Hawaiian shirt? Emma hoped, though doubted, that she would get an invitation to this funeral.

Sam laughed harder, “Jade made me promise not to tell her family about the funeral plans until after I’d mailed the invitations to everyone, so that they wouldn’t have the chance to alter her arrangements at all. Can you picture her mother’s face when she hears about this?” Now both of them were laughing so hard that their faces were bright red and tears were streaming down their faces. Emma had only met Jade’s mother once, but it was clear from her demeanor–cold and disdainful, and clothing—pressed slacks and a mock-turtleneck with an off-white pearl necklace— that Mrs. Livingston was not a fan of her daughter’s whims.

Somewhere during their fit of laughter, Emma realized that she’d subconsciously removed her glasses and had thrown her arm around Sam’s shoulders, and he had put his arm around her waist.

As their laughter petered out, he kept his arm tightly around her and leaned his head on her shoulder. Emma realized that she was rubbing his back gently in a friendly, comforting, and entirely inappropriate way. He lifted his head from her shoulder and looked at her in a way that made her heart stop. She knew he was going to kiss her, and for a moment her conscience wasn’t going to interfere. He leaned closer to her and…

CRASH!

Emma’s glasses slipped right out of her hands and knocked the jar of nail polish over which, in turn, had splattered nail polish all over the table and floor.

Flustered and furious with herself, Emma rushed out the door to find Suzanne, her nurse, who could clean up the mess. She then locked herself in the supply closet and leaned her forehead against a shelf. “Stupid, stupid, stupid!” she whispered angrily at herself. How dare she let something like that happen— or almost happen, she corrected herself. The man’s true love had been lying, dying right there next to them and she, a focused and determined doctor, had been flirting like a teenager. At only 29 years old, she was the youngest female doctor in this hospital and her whole career had been an uphill battle. She’d finally gained the position—and respect— that she’d been working towards throughout her whole life and she was now on the brink of throwing it away!

When Emma finally emerged, she went to the bathroom and washed her face, and then found Suzanne and asked if she’d been able to get the nail polish off.

“After a bottle and a half of nail polish remover and three packages of sterile gauze, we got it cleaned up,” the nurse smiled. “And Sam wanted me to tell you that he’s sorry.”

Just with the mention of his name, Emma’s head was spinning and her face was hot. She had never felt so embarrassed or ashamed in her whole life. She leaned back against the wall in an attempt to sturdy herself.

“Dr. Branson? Emma? Are you all right?”

“Suzanne, I’m not feeling well. Would you mind calling Dr. Call and asking him to cover for me today? I need to go home.”

Emma barely heard Suzanne’s “of course” as she grabbed her coat and keys and headed towards the parking lot.

Emma got the phone call that evening. Jade had passed away.

Five days later, a brightly colored floral invitation with an embossed image of a hula dancer arrived in the mail.

(To be continued. Maybe. Or maybe not. Um…. for now let’s just say, “The End.”)