Wednesday, March 6, 2013


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.
Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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