January 31, 2009

I'm Leaving and Not Coming Back!

"I'm leaving! I'll come back when SHE is gone!"

It sounds like something a woman would say, doesn't it? Perhaps a statement made by a jealous lover to her beau in order to force him to rid himself of an unwanted rival by means of force and manipulation?

This is not the case. Nothing is ever "normal" or "the usual" here in my world. I believe we would all die of shock if "normal" happened here.

Around 1:00 AM, my husband leapt from the bed and exclaimed the above statement loud enough to ensure that I would awaken. Then he grabbed his pillow and a blanket and huffed from the room. I think he was secretly hoping that I would follow him to find out what all the drama was about.

After a few minutes of laying in bed and laughing to myself at his uproar, I decided that I would follow him after all. I didn't follow him to beg him to return to our bed. No, that would be too easy. I followed him to incur a bit of relentless teasing. He always claims that the drama in the family is owned solely by my side. He claims that he has never had a moment of drama in his life. This was my one chance to point out to him that he is, in fact, dripping with drama.

You may be wondering exactly what was going on in our bed. What "she" did I have hidden amongst our covers that caused him to be so frustrated. I bet your mind is filled with visions of a jealous lover insisting that his wife's girlfriend be gone. That isn't the case, of course, but there was a girl in our bed causing a great deal of chaos. My husband, being the recipient of several punches and kicks, decided that he was done being her punching bag.

This girl of which I speak - Marisa. She's almost 3 years old. She loves to sleep in bed with Mommy, but not Daddy. Marisa's sole purpose during the night is to evict Daddy from the bed.

Last night she succeeded.

Granted, he has been begging me to evict Marisa from our bed for a few months now. I try, but she often finds her way back or insists on not sleeping unless I snuggle up with her. This is the fallout from co-sleeping that we willingly accepted in the beginning. (Okay - "I" willingly accepted! My husband never really got much of a say in the matter because I never asked him what his thoughts were on having little people sleep in our bed.)

Marisa likes to move around a lot at night. She gets this floppy nature from her Daddy, and yet he can't seem to tolerate her flopping around at night. I tried to explain to him that the reason he has such a hard time with "her" flopping is because "he" likes to flop, too. With her in the bed, he has little room for flopping. He never likes that explanation.

The real issue, though, is that Marisa likes to touch. She is constantly moving at night and putting a hand or foot on him. Her feet regularly end up at his head. She rubs his back at night while she's sleeping and this irritates him because her touch is so soft and gentle that it tickles. Sometimes she tries to wedge her feet under his legs, scratching him in the process with toenails that are always too sharp.

I walked to Marisa's bedroom where my husband had retreated in not-so-silent defeat. In whispered tones I said to him:

"You know, you could have just asked me to move her. I would've moved her to the living room. It wasn't necessary to have a dramatic outburst."

His response: "Harumph."

My reply: "And you said the drama came from my side of the family. I'm beginning to think that they aren't the only ones with drama in their genes."

His response: "Quit picking on me." A few seconds later, "I'll come back to bed if you move HER."

I - giggling all the way - go to our room and gently relocate the little deviant so that my husband can feel like he has won some sort of battle.

When he returned to the bed, we had a discussion on his behavior and just how darn funny it is for him to be having temper tantrums in the middle of the night. After about 20 minutes or so, I drifted off to sleep.

You probably think the story ends there, don't you!

It doesn't! Remember - normal does not exist here.

Some time later, I have no idea when, little feet came creeping into our room. An upset little voice was crying because she couldn't find her pacifier in the dark. She crawled up in the bed on my side and curled up against me while Daddy - ever the hero - went to locate her little precious. She, of course, refused to grace him with a "Thank You" for his efforts when he returned with her precious pacifier. She simply curled up against me and snuggled right up. You see, Daddy is Chopped Liver. He must always remember his "place" in her world.

January 24, 2009


Being tired is just horrible. Sometimes exhaustion can overtake everything. It's hard to function when sleep is missing. With the stress in our house, nobody has been sleeping well these past few days. The kids are still stressed over Daddy being sick, even though he is home from the hospital. I'm stressed over trying to take care of everybody and everything. It's hard to watch my husband be in so much pain and so uncomfortable when there is absolutely nothing I can do to help him.

I suppose this has been a very sobering experience for him. He is unaccustomed to pain or sickness beyond anything as simple as a cold. I know how hard this is because I've had pain for the past four years. I started seeing a chiropractor last July and my pain level is almost nonexistent now, but prior to that I was in constant pain all day and all night so I fully understand how difficult it can be to have so much pain and be unable to function because of it.

Until now he never understood what I was going through these past few years. He said he understood and made all the right noises, but he didn't REALLY understand. I can't deny that I'm pleased that he is finally beginning to see what my world has been like, but I hate that he has to go through this in order to fully comprehend the reasons why things were so out of control for me. I would have preferred that he would just know what it was like instead of having to live through this in order to have that certain appreciation for my ordeal.

I really hope this part of his illness passes quickly. It's very difficult for all of us to adjust to the demands and realities of this mysterious disease. The medical field named this disease "Stills Disease" after the person who made the discovery. I think the name is very telling because my husband spends most of his time these days trying to be very still so he doesn't cause himself anymore pain. Get it - being still - Stills Disease... yeah, bad joke. I know.

January 20, 2009

Memory Lane

I realized last night that I am reliving my past, only this time from a different position in the play. It is a very surreal feeling to be an actor in the same play with a new role.

In 1982 my father was in the hospital for an extended length of time. I was 12 years old then, so my role was that of the worried child that was blissfully oblivious to realities of the situation. I was shipped off to various relatives for the duration, only brought to the hospital for short visits from time to time.

Now, here I am in the hospital for an extended length of time. No longer blissfully oblivious, I am acutely aware of the realities of each symptom and each new day. Each step forward in this ordeal is followed by backward momentum that depresses the soul and terrifies the heart. I know what it means now when the doctor tells us the number that is associated with the white blood cell count. I know what it means when they tell us that he needs a CT scan of his lungs because white spots have developed on the x-rays.

The fear is often paralyzing when I stop to consider all the long-term possibilities. I wonder if this is how my step-mother felt those many years ago as she sat by my father's bedside, not knowing if he would live or die. I wonder if my father told her the same thing my husband told me today. I wonder how she might have reacted.

Mostly I'm wondering how much longer we will be here in this place. The butter colored walls are quite drab. I'm sure the designer thought yellow was a good color because it's supposed to be cheery. Really, though, it only looks institutional. It does not brighten the room or improve the atmosphere at all. The art on the wall - well, I guess they were striving for a homey feeling, but they missed in a big way. There's one picture in here. It's in a gold frame that's seen better days. The print is of a small lake surrounded by trees and flowering bushes. It's supposed to be pretty, but it really isn't all that pretty. Instead, it's boring and depressing because it's so generic. How many other prints just like this are stuck up on a wall in a hospital room just like this being stared at and contemplated by some distraught family member - just like this? The colors aren't even realistic, they're dull and muted.

I also know that I am not alone. All over the world there are many wives, mothers, husbands, children - all sitting in a room just like this and waiting. They all wait for answers, for cures, for futures. None of them know for certain where their journey will carry them. So here I sit, staring at yellow walls and bad art waiting for answers, cures and futures right along with a multitude of others who are unknown to me.

January 19, 2009


I'm sitting here tonight, still in the hospital with my husband, still waiting to find out when we might get to go home. At this point, we have a diagnosis of his illness, but not an idea of when we will be able to return to our normal life. (For those interested, he has been diagnosed with Adult Onset Stills Disease - a very rare auto immune rheumatic disorder. You can Google it to find out more.)

Hospitals tend to be quite boring, so there is a great deal of time to think. My mind has wandered to a topic that I recall reading many times in various magazines. The topic of which I speak is marriage. Many people ask what it means to be married and why marriage is so important. I never thought much of it, until now.

One question I remember reading quite often was this: "When did you first feel married?" I never quite understood the question. After all, what does it "feel" like, this feeling of being married?

Tonight, sitting here by my husband's bedside in the semi-darkness and wondering just how much longer we will be here and how much longer it will take for this particular nightmare to end, I fully understand what being married feels like. For the first time in my life I have been the person who was expected to be in charge and make decisions. It is me who the nurses have turned to whenever my husband was too sick to make decisions on his own.

It is mind blowing to be in charge when you really want to fall apart. This experience, this past week - now I know what this feeling of being married is like. I stay here most of the day and all night, sleeping on the floor by his side so I'm nearby just in case he needs me. This was especially important those first few days when he was unable to walk or even roll over on his own. So even though I have children at home who miss us both so much, I stay here. I know the girls are well cared for by their Grandma Janet. At least I can be here without needing to worry about them.

This experience has made me realize just how much I need this man who is so very sick. I've never seen him weak or scared until this week. Watching him become more and more sick over the course of a couple of days had me more than a little concerned about the outcome of this ordeal. Now I'm just so incredibly relieved to know that he will recover, even though we do not know how long it will take for this recovery to be complete.

Next time I read an article that asks married couples to reveal when they first felt married and what cause them to feel married, I'll think to myself - "If you only knew! Because now I know that just saying your new name is not really what being married is about. One day, when your spouse is laying in bed too sick to make decisions for himself - that is when you will truly understand what it feels like to be married."

January 13, 2009

It has been a tiring day. With two sick kids and a sick husband, life has gone a bit crazy. I have been unable to sleep since Friday night because the kids keep waking up crying at night. I took them to the doctor today and hopefully the prescription cough medication will afford me a night of much needed sleep.

As for my husband, it seems that his allergy issue may well be caused by peanut butter. The tragedy of this may be incomprehensible to some, but he is very attached to his peanut butter. He always has been, from what I understand. However, he ate peanut butter toast tonight and his rash got worse within just a few hours. I did a field study, so to speak, and rubbed peanut butter on his wrist because there was no rash anywhere on his arms at the time that I did this. Within less than an hour, both his arms were covered in a rash and the spot where the peanut butter had been was red and slightly raised. It seems that he may have developed an allergy to his beloved peanut butter after a 42 year love affair. We won't know for certain until after he can consult a true allergist and not just a crazy wife with crazy ideas about how to determine the actual cause of his skin issues.

January 12, 2009


I just returned from a week long vacation with the kids, leaving the husband behind to work. We both agreed that we could certainly use a break from each other. Having time apart is important to help us remember why we still love each other and still feel our marriage is worth our time and energy.

While I was away, the very handsome room steward on our cruise ship made it pretty clear that he was interested in me. Me? Mom to many? Post pregnant, non-teen body? Me?

I, of course, assumed that he was only flirting for the possibility of increasing his tip. I'm a flirtatious person so I played along. It wasn't until the third day or so that I began to realize that his flirtations were sincere and not as playful as I had first assumed. Hmm. He was serious. Imagine that. (Did I mention the post pregnant body?)

Well, being human, I began to consider the possibilities. It feels good to know that somebody other than my husband has an interest in me. After all, my husband is kind of obligated to be attracted to me, now isn't he? So my mind began to wander down the lanes of fantasy that one might imagine a single woman would wander. This guy - who was attractive and kind - was interested in me. Where could that lead? What if I were not married? What if I were not the type to be completely faithful? (I am, by the way, the type to be completely faithful.) What if...

It was an amusing trip down that lane of fantasy. All the allure of meeting a mysterious man from a far away land and falling madly in love (or lust...). But the realities are never quite like fantasies, now are they?

As I was returning home from my trip, I spent a great deal of time talking with my mom to pass the drive. We talked about how my husband and I have been together for 11 years this month. We talked about how that time just doesn't seem possible. The span of time we've been together does not feel like 11 years. It doesn't even feel like 1 year. Of course I have constant reminders of how long we've been together because our children keep growing and aging.

It occurred to me that the relationships that last are those that really don't feel their age. If it felt like 11 years, then it would be more oppressive to have this relationship. If we were not having a great time on our journey together then our years together would be less pleasant. We would be less likely to stick together through the hard times if our time together seemed too long.

I'm glad to know that I have this wonderful relationship that does not show and feel its age. Fantasizing about other possibilities might be fun for a day or two, but I much prefer my current reality.

January 11, 2009

The forest is a wonderful, yet scary place. It is so easy to get lost along the way. As I work my way through this forest called life, I find myself wondering where I'm going. Where will I be tomorrow? next week? next year?

Some may think they know where their paths will lead, but life has a way of never working quite the way we expect.