LIVING WITH SMA- Sleep. Honestly sleep for me is a relative term anymore. For those who KNEW me before I loooovveed my sleep. The first year and 3 months after diagnosis I ran the night shift due to Dan going to work. The night shift (for us) means always having one person up with her. Ella sleeps with a bipap, requires being turned often to avoid pressure sores and running her food/meds. The mask on the bipap is ornery and requires adjustment throughout the night to ensure she is getting good tidal volume (air in her lungs) which is kinda important. We now have night nursing several nights a week and that has made a huge difference so Dan and I are only holding down the fort a few nights a week. This, however, is the best way for me to explain how well my body rests on a regular basis. Think about when you had a newborn baby and you were constantly waking up to make sure they were breathing. Remember how you slept with one eye open and just below the surface of sleep. NOW, think about how you sleep when your child is sick. There you go.........that is how sleep looks for me. It is a causality of the war with SMA. So on those days I look worn and tired say a prayer, it may have been an all nighter or just an extremely emotionally restless one. The reality is, even after diagnosis and our world has flipped upside down, we still need to learn to live WITH SMA in the world. The demands of the world are still on our shoulders in the same ways as before we just have to find ways to adjust to living in the world different than most.
Posted on: Sun, 20 Oct 2013 12:26:54 +0000
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