“I have no job to go to or worry about, no house to keep up, no yard or van to maintain, no shopping for outfits to buy and take back, no toilets to clean, no food shopping or wonderful meals to prepare, no (quad) to endlessly care for and worry about, etc… it seems like my greatest stress in life is (choosing which audiobook or scriptures to listen to, which movie to watch on TV, responding to emails, scrapbooking the perfect page, or working on my current volunteer job at church). At those times, I feel sorry for everyone that isn’t a (quad)! You are all really missing out on something special! Well, being a (quad) certainly does have a downside…”…(Jack Rushton—words in parenthesis added) However, the biggest upside for me is to have been blessed by being married to a man like Mark! His typical day is insane! Now, his day would be fascinating to hear about, but I guess people are curious what I could possibly do:
I like to start each day w/”quiet time” (pray, think, ponder…). A dear friend explained “quiet time” like this: “I wouldn’t wish my (condition) off onto any of you regardless of its many up sides, but what a blessing it has been to me in giving me the time to ponder, meditate, and pray. My spirit has been strengthened and my mind enriched as I have lain in bed, unable to move my body, but able to let my mind reach out to a loving and kind Heavenly Father, who through the Holy Ghost, has inspired and blessed me more than I could ever say.” (Jack Rushton)
The beginning of the day also can include family prayer &/or personal scripture study.
Some days, I have someone who comes to help during the week. She is scheduled to come for a few hours, several times a week, but that frequently changes! She helps me exercise/do therapy–I try to get 1-3 hours of therapy Mon.-Sat.–I mostly do mostly physical therapy the days at home, but I also do equine (horse) therapy, music therapy, my own “speech therapy”, & occasionally aquatic therapy. She also helps me to do any odd jobs that a mother might do (I write her a list—sometimes it has jobs I can’t do, like “sweep my elevator floor”, & sometimes it’s finishing something I started, like hanging something I made & printed). We also try to squeeze in some scrapbooking! I try to be very structured with my time, so i can receive help from others.–Sometimes this means that I can’t go places w/the family when they/I want to go, cuz somone is scheduled to come help me!
When I am alone, I do stuff about the home (like any SAHM), I love to organize (& if it’s tactile, like organizing a drawer, this often lends towards good occupational therapy), I enjoy making schedules/lists, I burn CDs, I read & type emails or in my journal, I scrapbook (if I’m lucky!), I work on my current volunteer job at church, I read on my iPad (great therapy for my eyes) or listen to an audio book, I watch TV (I rarely do this, but sometimes I TIVO shows I can sing with), or I talk & visit w/a friend (this can be great speech therapy).
I also try to have a “date day” w/Mark (I may do horse or swim therapy, go out for lunch, see a movie, or just run errands w/him, or he may take me to get my hair done). We try to hold FHE (Family Home Evening) once a week, & in the evenings, I try to hang out around the family the rest of the night, so my iPad has become like a laptop & texting phone! If the family watches a movie, I may do a therapy as we watch (ie. Lift weights, sit on a mat, bounce on a peanut ball w/mk, mk may help me stand, or I may just practice leaning forward in my chair)… I rarely do anything without finding a way to do therapy: For ex., in the shower, i may do toe or leg lifts…another ex. Is that as I lay on my bed & get dressed,
- I may count & do sit-ups,
- I may say the alphabet or say difficult words (they are easier to say laying down),
- Or I may do some breathing exercises from music therapy…