Tuesday, August 9, 2011

If it's Tuesday this Must be Belgium

Woke up before the alarm at 6:15 worn out because I was having the type of dreams where I’m running around getting nothing done. I can’t imagine why. I realize immediately that I forgot to buy half and half for the coffee. Bummer.  My morning ritual would be slightly altered, I would have to drink my coffee black. Brush teeth, but no time for a shower. I get dressed and go downstairs.  Take the report from the nurse discussing Maggie’s low heart rate overnight, which was cause for concern. We discussed a change in her schedule due to Maggie’s upcoming overnight hospitalization for her sleep study. See nurse out, bring in paper from today and yesterday (which was never opened.) Suction Maggie, who then falls back to sleep. Run back upstairs to quickly grab some paperwork that needed attention and while I was up there I faxed the new oxygen orders to the school nurse for her files. tan back down because Maggie cannot be alone. Maggie is coughing and needs suctioning again. Worked on more Maggie papers due to a major screw up in her services (which I will discuss only when it is completely cleared up). Called the social worker to get a status update about that screw up, leave a message, receive an email response. Respond to the email. Maggie wakes up, needs suctioning. I get her ready, change her diaper, do the catheterization and put her in the chair attaching the tray, pole, and dynavox. Feed her and then play her music while I find her shoes and a jacket.  Call the supply company to order food, feeding bags and other supplies. Call the wheelchair company about the new caster for her chair and other parts that need changing. Take Maggie down in the elevator. Unload diapers and other supplies that arrived yesterday and sort them on the shelves in the basement, find dog and head for the bank to address issues with the account I use to pay the nurses. Run into a friend en route and chat for five minutes until Maggie gets antsy.  Push Maggie in her chair with the broken front wheel that sounds like fingernails on the blackboard with every revolution, and, since it’s such a small wheel, there are hundreds of revolutions. Go to the bank, chat with the employees, get the new checks I need. The bank manager offers to try to fix the wheel with bicycle grease, but I decline politely because the new wheel should be here today (they never called back). Suction her before leaving the bank. Walk home through the park so the dog can run a bit. Can’t get the chair past a city gardening truck blocking the road and have to take Maggie off road over the grass to maneuver through the park.  Worry about the wobbly wheel. Greet kids who stop practicing soccer to stare at Maggie. Ignore stares. Stop to feed Maggie at the other side of the park. Suction her again for the last few blocks to home. Stop at small store to buy half and half and bread. Carry groceries with one hand, steer chair with the other.  No curb cut, have to lower chair off the curb being careful not to land on bad wheel. Get home lift her out of chair, cath and change her, put her back in the chair, put on Maggie’s music and take her into the kitchen because she wants to cook. We make spaghetti sauce, stopping to suction Maggie every five minutes.  Nurse arrives. I give report and we discuss Maggie’s symptoms. Phone rings, it’s the new physical therapist for the school year. Discuss Maggie’s needs and medical situation. Hang up.  Text the classroom nurse to advise the bus schedule. Leave to go to Walgreens to pick up various medications and supplies. Have to wait while they fix a mistake in the charges. Smile apologetically at the people in the line growing behind me. Put two giant bags in car and see Starbucks beckining. In desperate need of caffeine, head  in and steal 10 minutes. Ahhh. Give my spot next to the electrical outlet to two college girls who need to do their final exam. Marvel at the differences since I was in school. (before internet OR Starbucks) Fully caffeinated,  walk back to the car where I run into an acquaintance who asks the same questions everyone does:
“You’re not working????  What do you DO with yourself all day?  Aren’t you bored?”
 Smile politely. 


  1. I'm crying real tears. And that last person? The reason why civilians should not be permitted to carry guns.

  2. This is like a poem, Sally. I love it!

  3. I have always said that I couldn't do the job my stay at home mom friends do, it's a lot of work, and even more so for you! I don't see how you get it all done!

  4. OMG my head is spinning!! I got tired just reading your morning story!! You're superwoman Sally!


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