Tuesday, October 18, 2011

There's A Monster in My Bedroom, Mommy

Can you hear it--the oxygen machine humming at the top of my stairs? It is so much quieter than the machine we had a year ago and infinitely quieter (and cooler) than the machine we had three years ago.

Even though we've had oxygen in the home for about 1/3 of the Dancing Queen's life, starting it up again was not easy. She cried and yelled "No! No! No! I don't like oxygen!" over and over again.

Finally, it was time and we had to fight her to get it on. I mean, we were having to hold her down and everything.

She finally gave in after the Mad Scientist and I explained:  
The oxygen was medicine. She needed it. Her lungs and heart were getting sicker and she needed the oxygen to help her sleep. She would feel better.
So, I placed the cannula in her nose, the tubes around her ears, and laid her down. Then, with the saddest face, she asked "Will you stay with me mommy?" I kissed her forehead and told her "No, but I would be sleeping in my room, right next door. You can call me if you need me." She got so very scared and I could barely hear her say "But the doctors will come in."

The Dancing Queen was petrified that she would be awoken in her sleep, in her own bed, in her own room. She was afraid they would poke and prod, conduct tests, provide treatments. The horrors that little girl has lived through without understanding why. The nightmares she must have. The ones where she screams out. The pain she has endured. I've watched countless times as the nurses and doctors have done things to her, pinning her down, as she screams. I've pinned her down . . .

Here, we had brought all of that home. Or at least that is what DQ's 3.5 year old mind thought.

My poor, sweet baby was petrified for a week that the doctors would be coming to her home to torture her like they do in the hospital. Perhaps she didn't realize that fear until it became real. Perhaps the fear only existed in that moment. But, she spent all of last week as we were waiting for the oxygen to come, crying about monsters in her room. I don't think it is a coincidence.

Of course, the Mad Scientist and I explained that nobody would wake her, except for mommy getting another kiss. She smiled at that. We reminded her that no doctors will come to her bedroom. That TRex would be there with her and Mommy and Daddy were a second away. She went to sleep.

We've had no problems with the oxygen since then. It has become routine again in a couple of short nights. And the monster has not returned to DQ's room.

Similarly, the seriousness of this "new" life has become routine again. Unfortunately, I haven't figured out a way to keep the doctors and monsters out of my bedroom when I try to sleep at night. Somehow they keep me awake when not even around.


  1. This makes me sad for all of you but, while reading your post--and hearing of the Dancing Queen's fears, I kept seeing her sweet smiling face and knew she'd conquer those fears as she always seems to. I hope you can conquer yours.


  2. Thinking of you and DQ and wishing you both sweet and easy dreams...

  3. Sweet girl. Gosh I bet that just broke your heart hearing her fear that because she had the oxygen in her room that the docs were going to come get her in the middle of the night. Poor thing. Glad things are going better. Praying for you!!


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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