A Familiar Sadness

Morningtime neb with the mouthpiece

Something happened last night that hasn't happened in many years: Addie fell asleep in my arms breathing TOBI and I was overwhelmed with sadness. I recognized it of course, but had not felt it for a long time. Watching her peaceful face covered in a plastic mask while smoky medication swirled around her stirred up an old panic of hopelessness. She was sleeping safely in my arms, but not really safe. She doesn't know.

With Rees, who is an adult, I fight fear (because I'm so happy he's OK but afraid of the years) and occasional anger (because I wish he would sleep more, exercise more, and do his flutter valve more!).

I have hardened myself over these 22 years and simply do not allow sadness to wash over me. I imagine I'm seen as cold by friends when I'm not as supportive in their sadnesses as I should be. I usually think of ways to be better afterward, when it's too late. I'm sorry about that. Love. Hardness. Sadness. Me.



Another night with the fish mask

Since TOBI is administered twice a day for 28 days, Ken has hooked her up many evenings and read books while she breathed it in. He also told me one night that he felt a long-buried sadness. I wonder if his sharing that made a tiny unconscious chink in my armor and my emotions grabbed the chance to flood my heart when she fell asleep on me. I know it's good to feel the feelings sometimes (I'm not that cold!).


So that's it, dear friends. This is just a sharing of Something That Happened to an old CF mom with another little one. We're in this together. We must allow the feelings, recognize them, own them -- then get up and grab a book or DVD for clapping and TOBI or make lunch before playing outside or get out a new puzzle to work on while in the hospital. We've got today to love and be loved!