Sarah Defies Gravity

what one little chromosome taught me about love, life, and defying gravity.

Pain

We are on day 8 here at the hospital. Sarah is doing great, but her immune system is fragile and she is really better off here in isolation than she would be at home. She will probably end up remaining here right through to the end of her second chemo. 

The big thing right now is that she’s in pain. Bone pain is fairly common in children with leukemia, but it’s never easy to see your baby in pain. She cries a lot. She’s never been afraid to use her voice, but it’s such a sad, pitiful cry. It’s “help me, daddy” when I can’t help her at all, and though I’m not opposed to painkillers, it’s still hard to see your one year old doped up so that she doesn’t feel the pain anymore. She shouldn’t be in pain to begin with. 

Comparitively, though, everything is very good. Her treatments are working as they should. She’s responding very well to them. This bump in the road (readmittance) is normal. Her down syndrome, combined with modern medicine and the power of positive thinking, is working to our advantage. I hate to complain and scream and cry when things are good, comparatively. She is not dying. She is still fighting. 

But it’s still not easy. It never will be. I’m just living every day, moving forward, to the time when this will be a very distant memory. I’m scared to lose her. That’s not even a question. My sister died four months ago, and that’s still fresh in my mind. But I know that the odds are working in our favor. Iknow that Sarah is going to be fine. I can’t let the fear consume me when there’s so much to be positive about. 

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4 thoughts on “Pain

  1. It is so so hard to see your baby in pain. I wish we could just take it away from her. Hugs to you to get through this. She continues to be in my thoughts.

  2. Erin on said:

    Poor baby. Sending hugs.

  3. I was reading on the DS babycenter board and came across some of your comments, so wanted to learn more about Sarah— my heart hurts right now. Cancer sucks so much it is not even funny. I agree with Leah– I wish I could take the pain away from her. Will be praying for Sarah (hope that is okay). Hugs to you and your wife and to sweet Sarah. She is a fighter!!! Keep fighting the good fight, Miss Sarah and happy belated birthday precious girl!

  4. I am thinking about you and Sarah. Hugs.

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