Sleepless . . . Again

I haven't been sleeping.  I don't even remember the last time I had a full night's sleep.

I've never, ever been a good sleeper. It has never come easy, but this is so different.  I've blamed my thyroid (or lack thereof).  I've blamed seasonal allergies.  I've blamed gluten.  I've blamed the Mad Scientist's snoring. I've blamed being too cold at night, being too warm at night, back pain, leg twitches, the Dancing Queen coughing over the monitor . . . The list goes on and on.

Every night, something different keeps me awake. Melatonin no longer works.  I've taken the new ZZZ sleep, but it only lasts for about 4 hours, then I boing awake again. And in the morning, I'm so tired. By afternoon, I can barely function.

Is my lack of sleep directly correlated to my lack of writing here?  I've wanted to write; felt I've needed to write, but I have nothing.  I'm holding everything in.  But the weird thing is, I don't feel like I'm holding things in.  I don't lay awake worrying.  I don't think about what-ifs.  I just lay there.  Nothing.

It's true that the Dancing Queen turned 6 a couple of weeks ago, an age I never imagined for her when she was a baby.

And we are now a year out from admitting DQ to hospice, from learning she only had a handful of years left.

Am I depressed?  Am I feeling anticipatory grief?  How can I be?  The Dancing Queen has looked SO good lately.  I know looks on the outside mean nothing, but she just seems to be a little better.

Perhaps denial on my part is hurting me and keeping me from feeling.  I just don't know, but I want to sleep and feel rested.

Naptime

It was Saturday afternoon. As I carried in groceries, the Dancing Queen cried out over the monitor.  She didn't want to take a nap.  The Mad Scientist tried to talk to her, cajole her into some sleep, but she didn't want to miss out on anything now that mommy was home.

I left the boys to put everything away and brought the Dancing Queen to my bed.  I laid her down and promised to stay with her if only she took a nap.  (The night before had been hard.  The Dancing Queen's rest was broken by lots of pain--her ear filled with infection. Again.)

I needed her to sleep.  She was so tired, exhausted.

After a couple of minutes and telling me several times that she didn't need to sleep, "just rest", her breathing steadied.  Her eyelids stopped flickering.  She stopped switching out pacifiers. 

For a while, I just laid there, listening to TRex downstairs.  He was making a lot of noise, excited to be spending time with his daddy.  Then the doors banged one last time as the boys carried Christmas lights outside for hanging.

So, I laid there, head-to-head with my sweet girl, breathing her in.  I watched her long, long lashes, unmoving now.  When was the last time I had looked at them?  They looked just as they did when she was a baby.  She always had the longest eye lashes.

She made the faintest of sounds as she slept.  And the constant hum almost lulled me to sleep.

But then I listened to that musical heartbeat.  I started to count the missed beats and tried to find a discernible pattern in the way it would speed up and slow down.  And as the Dancing Queen's body seemed to fall deeper and deeper into sleep, her heart never felt at rest to me.  It didn't seem even either.  There was no set rhythm.

And I was reminded of how fragile all of this is.

How much longer before too many beats are missed?

When will that faulty rhythm be too out of sync? 

As I silently wept in my baby's hair, holding her tiny hand, I wished for the moment to last forever.

Instead, the Dancing Queen rolled over, leaving me . . .

Sleepless

I've never been a good sleeper.  In fact, I am the biggest loser of sleep.  It would take me hours to fall asleep even as a child.  I had no idea that people actually fell asleep within minutes of laying down. I simply assumed it took hours for everyone until I moved in with the Mad Scientist.  He even used to try to teach me how to go to sleep. It never worked.  I could never turn my brain off. Laying down was usually the first point in the day that I had just to my thoughts, so I would think. I couldn't stop myself and it would keep me awake.

Lately though, I'm not sleeping, but this type of not sleeping is different. I stay up late, despite being desperately tired. I just can't get myself to go to bed. I tell myself I'm too tired to climb the stairs.  But that's not it really.  I sit and watch brainless television or play ridiculous games until my eye lids are so heavy they can't possible stay open. And then, I climb the stairs and fall into bed.

Last night was even more ridiculous than normal. I had only about three hours of sleep the night before because DQ had been up off and on coughing (she has bronchitis).  All I wanted to do for the entire day yesterday was take a nap, but I couldn't.  There was too much to do.  The Mad Scientist and I ate dinner around 8:30 as our norm. At 10:00 p.m., he went to bed. Despite having almost fallen asleep on the couch watching tv, I stayed up. It hit 11:00 p.m. and I still couldn't force myself to go to bed. Finally, at midnight, I got up and went to bed, thinking the only way my eye lids could stay open was if I used toothpicks. I could barely get myself up the stairs.  After kissing TRex and DQ, I laid down and fell asleep immediately.

I was so angry with myself this morning--blaming my exhaustion on staying up playing Candy Crush Saga and Ruzzle. When I dropped TRex off at school, all I could think about was "how will I make it through the day?" When we walked into the building, one of the dads asked where DQ was that morning.  I explained that she was home sick with her daddy.  The dad responded "I hope she gets better soon." and went on his way.

As we made our way to the cafeteria where TRex attends the before school program, he asked me when DQ would get better. I replied "her bronchitis should clear up in a week or two."  He insisted that I go further, asking me "But mommy, when will she get all better?" Of course, I had to tell him she wouldn't. He was sad and clung to me tight as I said good-bye.  He didn't want me to go.

The woman in charge of the before school program asked if TRex was alright. I told her no, but he would be. I had to explain further since I wanted him to feel safe when I had left the building. In my tired state, I told her that TRex wanted to know when his sister was going to get better, but she's dieing and there is nothing we can do. I sobbed in the middle of the elementary school cafeteria, all the while trying to hide it from TRex.

As I drove away, instead of listening to the news, I was left alone with my thoughts. "How could I say DQ was dieing? What made me cry in the middle of the cafeteria? Why can't I keep my faculties in check?" I screamed at myself: "THIS ISN'T ME!!"

I then started to bargain with myself. "If only you weren't so tired, you would have held it together. If you hadn't stayed up late watching stupid tv, you would NOT HAVE CRIED IN THE CAFETERIA!"

In yelling at myself though, I realized none of it is mindless games and late night tv. I don't want to think about my baby possibly dieing. I didn't want to do it in the cafeteria and I don't want to do it at night. I don't want to think about it!  But late at night, unless I'm too exhausted to think, I do think about it. I can't help but think about my sweet, sleeping children, happily dreaming in their beds and how reality is hurting them.  When I don't pass out from exhaustion, I can't help but think about DQ's upcoming Pinkalicous birthday party and how this might be her last birthday. My mind won't let me escape the worry over how to help TRex and DQ cope.

But, if I stay up way too late, doing nothing but occupying time--doing the trivial and meaningless--my brain will focus on something other than my thoughts and feelings.   If I force myself to stay awake doing something, anything until I'm certain I will fall asleep immediately, I won't have to think about what I don't want to think about.

So, I'm exhausted due to lack of sleep. I have many nightmares when I do sleep. And, in the light of the day, I'm not emotionally prepared to deal with questions or things that come up because I won't let myself ever think about my feelings about DQ's prognosis.

But now I know and I can begin to work toward a healthier way to deal with it all.

Nightmare

I saw the GI about two weeks ago and it was decided that I needed to be biopsied again. I scheduled the test for May 7 because I had a trial before then. At the time, I was feeling bad--nausea after meals and the pain and other the symptoms I had been experiencing for a long time--but it was manageable. The doc even offered me pain meds that work specifically on the small bowel where my pain has been concentrated forever. I declined because I knew no matter the test results, after the test, I was going gluten free to see if it helped. The GI was in agreement and actually suggested it before I mentioned that was my plan. So, I left that appointment, ready to do what was necessary. I had a plan.

That was about two weeks ago. With the test coming, I made certain I was eating at least two glutenous meals a day. And then, I started to get worse. Every symptom has intensified. And now, I'm living in a food nightmare.  I dread eating, but I seem to always be hungry, even after eating. I feel like I'm living in a constant fog and I can't concentrate. I'm tired all of the time, but I can't sleep. The pain and nausea are at all time highs. I could barely drive the other day and as soon as I got home, I kissed the kids (barely) and dropped into bed, crippled over in pain while the world seemed to be spinning relentlessly.

The Mad Scientist implored me to stop the killing myself for the diagnosis and TRex begged me start not eating what I love, but I didn't have a day to take off before the trial, especially since I didn't work Thursday afternoon through Wednesday morning.

And then it happened, the trial got wrongly adjourned (by the other side), so I gratefully moved my test up. I will finally be able to go gluten free this Thursday. When I began this journey back in February, I dreaded going gluten free. But now I'm ecstatic at the thought. I want to feel better. I need to feel better.

Gluten had better be my nemesis. I can't take any more of this nightmare.

One Lovely Blog

My friend Krista over at Thar She Sews nominated me for the One Lovely Blog Award. I am totally stoked to be nominated, especially since I enjoy reading her blog. Actually, I'm a little envious because her blog revolves around her craftiness and I so love to craft, but no longer have the time nor energy. I keep telling myself someday, but I know if I really wanted to do it, I'd do it. I can't imagine crafting in my itty bitty, way too stuffed house. Perhaps someday, I'll have a basement and my kids will each have their own rooms so toys can live there rather than my living room.  Anyway, I'm honored to have been nominated and will gladly tell her and all of you seven things about myself, followed by my own nominations.  (In case you missed it, I did a similar post way back in the very early stages of this blog.)

1.  I started playing tennis my freshman year of high school simply because I wanted a fall sport and I was way too short for basketball and I hated to run so cross country was out of the question. My play was to play tennis in the fall, volleyball in the winter, and soccer in the spring, but I fell totally and completely head over heels in love with tennis. From that fall through the rest of high school, I played tennis year round. I took lessons at the local club in the winter and summer. I took camps whenever I could. I lived and breathed tennis. So, I went from never having truly played the summer before freshman year to first singles my senior year. Unfortunately, I stopped playing in college because I had burned out. I wish I could play now though.

2.  I met my husband on Yahoo! Personals while studying for the Michigan bar exam. I couldn't study 24/7 and all of my friends were working, so they couldn't talk to me, so I went online to meet other people to talk to. The Mad Scientist worked the night shift, so he could send me emails during the day. We emailed back and forth for a couple of weeks. They were great emails, but I had no intention of continuing the emailing after the bar exam since I'd be back at work. But he ended up calling me and asking me out. I went out with him even though the date from hell had happened the night before and I vowed no more men. I figured the Mad Scientist would just be a friend anyway since our emails had been so real and interesting. And the rest is history.

3.  My new love is red wines from Argentina, especially the malbecs.

4.  When I was pregnant with my son, I was petrified the entire time that he would be born during the Woodward Dream Cruise (Thousands of classic cars driving down the main thorough fair with hundreds of thousands of people watching, all blocking the way! And they start to gather and cruise days in advance and practice all the preceding weekends.) I couldn't figure out how I would get to the hospital if I went into labor during the cruise since all of the old and slow cars would be blocking my way. Guess what day my son was born. On Dream Cruise! I had nothing to worry about, everyone got through (I had been at the hospital several days), and it was a silly thing to worry about.

5. I have always been a dog person, despite living with cats most of my life. However, now that I'm older, have little time and a tiny house, I think I'd be happy never having a pet again. (Not that I'm wishing ill will toward my current cat.)

6. I am totally a night person. Left to my druthers, I'd be up until late, late, late, and sleep in. Unfortunately, that is not an option any longer.

7.  I am short and plump and not in a good way. Living the sedentary life of a litigator and having small children make it difficult to exercise. I would love to be able to get up in the morning and ride a bike or join a friend for tennis, but the Mad Scientist leaves for work around 5:00 am and I'm not exercising at 4:00 am (see number 6). When I get home from work at 9:00 at night and finish dinner around 10:00, there is not much time for anything else since I should be in bed at 10:00. Therein lies the quandary. If I could function on less sleep, I'm sure I'd be set, but alas, I need sleep to think.

Now it is time for me to nominate other bloggers. So, here it is, the blogs I find truly lovely for one reason or another. If you've been nominated, the idea is to tell 7 things about yourself and pass it on.  (This is the blog version of a chain letter, but I'm not asking for any money, just your soul!)  If my readers have never visited these lovely ladies blogs, you should totally check them out!