Just for Fun

I learned a new poetic form today. It's called the clerihew and is meant to be humorous. While I can't post my poetry in here if I have any plans to try to publish it elsewhere (publishing laws are strange in this electronic age), I was just having fun this morning. I thought, after all the heaviness of most of my posts, I would send a little lightheartedness your way. Enjoy! :)

ALEXANDER
His mother named him Alexander.
He speaks with such refreshing candor.

His brain is packed with lots of facts.
He is, by gosh, a class A act.


KATE
For short, we all just call her Kate.
Clearly now that is her fate.

A princess she was meant to be;
that's plain as day, for all to see.

BRENDAN
My baby’s name is simply Brendan.
Christmas Eve was homeward bendin’

on the day he came to stay,
decided he would join the fray.

My Safety Net

I am truly a fortunate soul. I've realized that in a new way the last couple of days. I think sometimes we get so caught up in the demands and challenges and ordinary pursuits of life that we forget what really matters. Many people go through their entire life that way and only wake up to the fact at the end -- if at all. I am among the lucky ones; Mark's illness has stripped me of so many external things (financial security, career pursuits, the hunt for something bigger/better). I've been driven to a point where I have two options: I can curl up in a corner and become a bitter, stagnated lump, or I can cultivate that which is eternal -- friendship and love. If I had to chose between what I have now (even with all the challenges included) and a life of wealth and career opportunity without genuine friendship, I would choose the former, without a microsecond of hesitation. Let me tell you about the last couple of days, and you will see why.

Yesterday I went to my dear friend Andrea's house. She already had six kids there: two of her own and four that were "borrowed." I added another. It was chaos, but a good kind of chaos, the kind that makes you feel like the life is bustling at your feet. After awhile we decided to take them to the park. It took us half of forever to get them all out the door. They all had to go potty and find shoes and jackets. We had to arrange car seats and lunch. It was quite the endeavor. And when we finally got there, the kids took off in several different directions, and we spent a good ninety percent of the time chasing them down. I would be surprised if Andrea and I exchanged more than a half dozen sentences that contained anything of substance the whole morning, but one of those sentences was, "I'm so glad you came over today." I also know that some day (sooner than we'd like to think) the kids will be grown and gone. Andrea and I will sit with our coffee in our quiet house and reminisce about those crazy days, and we will be partly so glad that those days are over and partly sorry that they are gone. In the meantime, there is such reassurance in being able to reach out to a kindred spirit in the middle of the chaos and say simply, "I'm so glad you're in this with me."

Today I was granted several more reminders of this sisterly camaraderie in my life. The first was from my actual biological sister, Becca. She called to tell me that she had activated my support system for me. She has set things rolling so that I have people in place to provide meals two evenings a week and to be on call for child care four days a week. One person has even volunteered to take a 24 hour shift once a month so that I can get away for some respite. I don't even know how to thank her. My heart is just so overflowing that it defies being put into words.

And then, in the midst of all this, I had an email exchange, back and forth several times, with a woman who is quickly becoming a dear friend. We chatted about the weather. (I laughed out loud when she told me it was snowing again and added, "I can't believe people pay good money to play in this muck.") We talked about her cat and her bread making endeavors. We talked about illness and pain, about feeling swallowed up by the needs of your family. She sent me links to poetry websites and a picture of herself in a darling pink hat. I sent her pictures of my kids in the snow. It was a simple thing, just an exchange of words and images, but it was so much more than that. It was friendship. It was her saying to me and me saying back to her, "I'm so glad you're here with me."

As if that weren't enough, I got a phone call at nearly three o'clock from Amy, who was having a party and had forgotten to get out the invitations. "It's at seven o'clock. Can you come?" Four hours from then? I was dressed in my duds, cleaning house and taking care of kids, but Mark was feeling relatively well yesterday (yea!) and I thought, "Why not?" So after dinner I put on a nice sweater and some earrings and some fresh makeup and set out. I have to tell you ... I lost track of time. I was having such a great time, sipping my red wine and eating the most scrumptious chocolate cake and talking (and talking and talking) with Cynthia that when I looked up, it was suddenly nine o'clock, and I knew I needed to get home. When I said good-bye and walked out the door, I felt lighter than I have felt in a long, long time.

I feel like a tightrope walker these days, but lately I have realized an important fact. Between me and the hard floor of the circus dome, there is a net, constructed of the clasped hands of my friends and loved ones. I may teeter in this challenging balancing act. I may even fall and have to climb up and start again. But I will never hit the ground with this net between me and the floor. And truly ... what more could one ask for in life?

Painfully Ever After ...

Today was hellacious. The doctors, while they cannot find the cause for Mark's pain and cannot offer us any kind of alternate treatment, want to wean him off the morphine completely within a year. Today, when I took him to the ER for some bleeding, his pain spiked while I was out stretching and making a couple of phone calls. When I came back, he was sobbing and shaking and writhing in pain. They gave him an anti-inflammatory, but they wouldn't give him any narcotics. He and I and everyone else know that he is physically addicted to these meds, but they told us when he went on them that that would happen. Now they want to take him off of them? without offering him any other kind of treatment? or even any hope that eventually things will -- or even might -- get better? What are we supposed to hang onto to keep us going? It all just feels a little overwhelming tonight.

Camouflage and Stripes

Brendan dressed himself yesterday. I had to step out for a few minutes, and when I got back, he was dressed. My pride at his initiative was quickly followed by a sense of mild horror at his choice of clothing. I may have very little fashion sense, but I do know that camouflage and stripes do not mix! And yet I bit my tongue and resisted the urge to make him change. Maybe it was nothing. I mean, kids get dressed every day, right? And eventually they do need to learn how to pull together an outfit that doesn't leave everyone snickering. But to me, more was at stake yesterday.

First of all, I felt it was important to reward the fact that he got off his skinny little duff and got himself dressed, without a bit of help or prodding from me. We mothers often undermine our kids unwittingly when they do something that is a stretch for them, and then we come behind and tell them (usually without words) that their effort is not good enough. Why should they bother trying if we are going to come along and undo it?

Secondly, I want my kids to have a feeling of control over their own lives. Of course, that control is limited. At five years old, he is not ready to wander the streets alone. He's not even ready to pick his own bedtime! But kids need to have control over age appropriate things -- like picking out their own clothes. If they are not allowed to make some of their own decisions, they begin to feel like life is happening TO them. A healthy amount of control over one's own decisions leads to empowerment, while being acted upon by "superior beings" leads a child to grow up passive, distrustful of the value of their own thoughts and wishes.

I feel strongly that it is important to empower all children, but it is especially important for mine. With so much of life careening out of control around them, they simply MUST know that they have some power to affect their own lives, that they are not merely plankton, being tossed around in the vast expanse of a merciless sea. And so I try to let the little things go. I let the boy leave the house in camouflage and stripes, praising only his effort, knowing that there will be plenty of days down the road for fashion lessons.

Staying Behind

It's almost 10:30. I am numb. The ambulance just pulled out with my husband in the back, and I cannot follow them. I just cannot.

I took a hot bath after I got the boys to bed. When I came out after staring at the ceiling for nearly an hour, Mark was in pain. I went to bed anyway, but it only got worse. He started having sharp pains, in his chest and shooting down his arms. We called 911, and I DID plan to follow them, but the aspirin and the nitro helped him a lot. I can tell he's not in danger. (What if I'm wrong? I just can't think about that.) I just can't drive without a little sleep. I seriously don't think I would make it. I feel horrible, though. Sleep. I have to sleep.

Not Your Usual Rainman

Alex is an unusual kid. I couldn't tell you if he's my easiest one or my most challenging. Often, he's both.

We knew early on that he was different from other kids. He didn't talk, for one thing. Until he was three years old, he didn't say a word. He's sit there and smile at us, friendly as a puppy, but he didn't seem to feel any need to try to communicate. And he didn't play, not really, not like his older sister, who would create her own imaginary world to inhabit. He liked to organize things -- to line up his beloved videos, for instance. Autism, the experts speculated.

I still wonder if the term fits. It's a spectrum, I know -- a very LONG spectrum -- and my son is definitely on the higher functioning end of it. He hasn't given us the horror stories that I've heard from many parents. He didn't stay awake for the first few years of his life, for instance. He doesn't rock and bang his head when he's agitated. He doesn't shriek when he is touched. He doesn't find his own feces fascinating (any more so than a regular boy!), and he doesn't come completely unglued when his routine is disturbed.

His challenges are far more subtle than that. His speech is still delayed, for instance, while his mind races far beyond his years so that he speaks often in three and four syllable words while listeners struggle to decipher his meaning. He loves to engage in monologues on his topics of interest. His brain can hold copious amounts of factoids, which he loves to share with anyone who will stick around, but he seems to have no understanding that others may not share his enthusiasm. And do not ask him to break off in the middle of a thought. It cannot be done.

Recess is a struggle for him, largely because he doesn't know how to play. Well, that's not entirely true. He lives to play video games, and he enjoys board games. In fact, he is a formidable opponent in games like chess or Sequence. But in these situations, he is fitting himself into an established structure, and his mind is oh-so-fond of structure. He cannot put himself into an imaginary world, become a dragon (or a dragon slayer), the jungle gym his castle, the wood chips a mote or an expanse of bubbling lava. He cannot jump into the middle of a ball game -- and wouldn't want to. The limbs on his extra large body hang loosely and do not work well together, except to get him from point A to point B.

Alex is fond of rules, to the point that he will not break them, even if given a chance. I offered him one such chance the other day when we were playing Sequence together. He had forgotten to draw a card, which puts him at a disadvantage for the rest of the game. I told him he could take it anyway. He replied, "Isn't that against the rules?" I told him that yes, it was, but that it was okay this one time. He said, "No. I'd rather not." The downside to this is that he expects others to be equally conscientious and tends to play policeman, annoying his peers and siblings to no end with his attempts to get them to do what only seems rational to him; i.e., to obey the rules. Alex is a black and white child in a gray scale world.

Despite all his challenges, Alex is truly the sweetest child I know. He loves to hug people and gets genuinely upset when he hurt people (which, sadly, he does often!). He is often the target of bullies, and I have been trying to teach him comebacks, but he refuses to use them. "That's not nice," he says. And he's right. It's not. But if I could get him to say, even one time, "If I'm weird, you must be totally crazy," life with his peers would be so much easier for him. If he could bring himself to kick back when he's cornered in the bathroom and tormented ... If he could bring himself to hurt those who hurt him, perhaps he wouldn't be the one on the bottom of the dogpile so often. And yet ... I cannot practice what I preach, either. I understand his logic. Meanness is vile, even if it's deserved, and I'd rather be at the bottom than claw my up at other's expense. At least my beautiful boy will be there to keep me company.

Riding the Rollercoaster

Driving home from the emergency room yesterday evening, I felt such a surge of hope. We had made it four days without seeing the inside of a hospital -- a feat we haven't managed in a quite awhile. Also, the iron infusions seem to have helped Mark's severe anemia, and he's putting on weight. At 6'5", he's finally 159 lbs. They actually got to use an adult sized blood pressure cuff on him today! As if that weren't sufficient cause for celebration, the medical staff managed to get him reasonable comfortable without narcotics in a mere 2 1/2 hours. I was, to say the least, pleased.

I was relaxed, too, for awhile, because I knew my kids were all in good hands. Earlier, when I first realized that I was going to have to take him in, I made three quick phone calls. Becca, Jen, and Pieper all said, without hesitation, "Sure. I'll take a kid." The Spinks were even about to set out for Abby's Pizza to celebrate Scott's 37th birthday, but they both insisted that Alex was more than welcome to come along. The love and compassion of these three women and their families was a powerful tonic to my soul.

But on the way home, a line from one of my own poems came to me: "Hope is a four letter word, profaned by the mundane." I cringe in the face of hope. It is such a fall from there to reality, these days. And yet the lack of hope is far, far worse.

A few days ago, the doctor on duty gave Mark a new drug that sent him into severe anxiety attacks. However, no one put his reaction in his chart (despite my request that they do so). Once I thought he was settled yesterday, I took my new book of Franz Wright's poetry and went to the cafeteria in search of a turkey sandwich. When I got back, I learned that they had given him this same drug.

I think that's why I didn't bother to get undressed last night. I took off my jeans, but kept everything as is, climbed between the covers and dozed for a few hours. Sure enough, at 1 a.m. he woke up, agitated. Despite taking Benadryl to counter the previous medication, his state of mind continued to spiral up rapidly. I almost called 911, but our local fire department is volunteer and I couldn't bear to drag them all from their beds if I didn't have to. And I just couldn't bring myself to call Jason either. Not again. He would have been over in a flash, but there is only so much you can ask of one person. So I woke up Kaitlyn and had her get in my bed with Brendan. (He doesn't sleep well alone.) And we set out.

They tried not to give him an IV again. His veins are getting scarred up and starting to collapse, and they don't want to traumatize them anymore than they have to, but oral and IM meds were not working, even after several hours. In fact, he was getting worse, with pain and severe nausea added to the anxiety. Finally, they had to do the IV anyway. Phenergan and Dilaudid finally cut through it all. At 5:30, we headed for home.

I'm trying not to think too much about the day ahead. At least preschool will grant me two hours to sleep later this morning. Then I'm watching J.P. and Gabby for Becca. (I won't tell her about last night until it's too late for her to back out of her plans. She gives me so much. It's her turn today.) And then I have to take Mark back to the pain center for a routine visit. By 5:00, my day should be more or less over -- except for dinner. And kids. And homework and laundry and cleaning up the eternally mucked up kitchen. Sorry, Mr. President, but I don't think I'll be staying up to listen to your thoughts on the state of our Union tonight.

I've decided that television is really not good for one's internal well being, anyway. It is rather anesthetizing, but last night it seemed to me to reflect a world full of emptiness and despair. Mark had the TV tuned to Fox and Friends, and the commentators' arrogance made me want to duct tape their mouths shut. Then some entertainment show came on, where they were discussing anorexia and a new form of plastic surgery. When they went to commercial break, and a picture of filthy, starving children flashed on the screen. I left the room. "No starving children," I said over my shoulder to Jarod, the nurse. "Not tonight."

Speaking of children ... just the other day, after we had dropped Mark off at the ER and were pulling away from the hospital, Brendan asked me, "Mommy, why is Daddy like this?" I told him, "He was just born that way, honey. His heart has a bad hole in it, and his body is getting tired of having to work so hard." He said, "But ... why did Jesus make him that way?" I cringed, praying for the right words to say, but could only come up with, "I don't know." I could see him in the rear view mirror, thinking hard. I wanted to cry when at last he said, "Well, I still love Jesus anyway."