Mass is a challenge with the wheelchair. At our home parish, there’s not really anywhere to park a wheelchair that isn’t in the aisle, and there isn’t any place to be in the aisle that doesn’t block the flow of traffic at communion time. We like to have Cee away from germs, not right […]
Today we had plans with some dear friends, and while we went back and forth about whether to cancel based on life yesterday, ultimately we decided to go. Some events are not flare-appropriate, others are. If Cee is laying on the couch at home, she could lay on the couch somewhere else, after all. We […]
Participants in “Write 31 Days” pledge to write for 30 minutes on a single topic every day in October. My topic? Happiness. After a talk between Cee, David, and myself, today we decided to get Cee’s wheelchair out of its cobwebby corner in the garage. Cee’s pain has been slowly crescendo-ing. First the limp was a […]
Participants in “Write 31 Days” pledge to write for 30 minutes on a single topic every day in October. My topic? Happiness. Today Cee passed her plate to Elle and asked her to mash up her sweet potatoes at dinner. Confused as to why she didn’t do it herself, I asked if her wrists hurt. […]
Participants in “Write 31 Days” pledge to write for 30 minutes on a single topic every day in October. Yesterday I chose a topic— Happiness. Now I have to explore it. At the time it seemed like a great idea. Now it seems more like a joke. Cee’s hip started hurting a little. This morning. […]
Cee is unable to walk, stand, or roll over without intense pain. She wakes up crying multiple times throughout the night. And this is with the meds she’s already on. She spends all her time on the couch or in bed, unless we’re going to swim therapy. There is much wailing and gnashing of teeth to […]
I may have paraphrased a little, but these are some of the actual “truths” we have been told by professionals, that is, people with specialized training, regarding Cee’s situation. -Mayo isn’t as great as everyone thinks. The people in Rochester choose to go to the local hospital instead of Mayo. That says something. -Mayo is the […]
As Cee excused herself from the dinner table to go to the bathroom, David and I watched her hobble slowly down the hallway. “When did this become normal?” David asked defeatedly. Normal these days is having an almost-five-year-old who doesn’t dress herself. Who sometimes needs help holding a cup. Who doesn’t like to be hugged or […]
Yesterday was not completely terrible, and today looks like it might be not terrible as well. “Not terrible” is the new “good.” Cee ate. (She didn’t eat any vegetables, and she may have had eggs for all three meals, but they were bright yellow yolk eggs from my aunt’s farm. Lots of nutrition there.) Cee played. (Early […]
Cee had some good moments yesterday. We went to the magician hosted by the library. My sister brought over some kazoos (which the girls love, love, love!). But other than that, things continue to unravel. Cee picked at her food all day. She doesn’t want to go to the bathroom. Apparently she didn’t get the memo […]