Lori Meyers of Dallas is the mother of Rachel, 11, Sarah, 8, and Emma, 6. Sarah has CHARGE Syndrome, a complex birth defect that has led to congenital heart defects, hearing impairment, a feeding tube, delayed walking and other developmental delays. Lori, a former account manager with Sprint, stays home with the girls and her husband, Trent, is a vice president at SAP.
4:08AM Wake up to Sarah crying “ice babum,” which translates to “ice water.” Go downstairs and get her some ice water — she drinks, giggles for a while and goes back to sleep, unlike yesterday when her day started at 4am! (I watch and listen to her from a video monitor beside my bed. Sarah must be monitored at all times when she is awake.)
6:48AM Sleep through the alarm for 45 minutes. Jump in the shower to wake up. I get dressed. Trent is up, too.
7AM Sarah’s awake. Wake up Rachel. Attempt to wake up Emma.
7:13AM I’m downstairs getting coffee, making lunches, pulling Sarah’s medicines and tube food. Trent feeds Sarah some applesauce and half of a peanut-butter-and-jelly sandwich (by mouth!). We both get the girls finished up (breakfast, shoes, backpacks).
7:51AM Out the door with all three kids. It’s not so chaotic because Trent is in town. He helps me load up and I take them all to school.
7:53AM Drop off Rachel and Emma at their school and head to Chase’s Place, a private school for students with developmental disabilities. The school is for students ages 5 to 14. Thankfully it is a good drive — no screaming, crying or traffic jams! Sarah does find my tote bag and dumps it all over the floor. She finds the Chase’s Place brochures and smiles at the pictures of herself and her friends. Happiness.
8:31AM Arrive at Sarah’s school. Give Sarah her medicines and tube food. She runs to Elizabeth (the school’s administrative director and a family friend) for her morning hug. I kiss her goodbye.
8:41AM Drive home while listening to my latest book on CD, The Girl Who Stopped Swimming.
9:08AM Home! The glamorous duties begin. Make beds. Feed Emma’s fish. Sort and start laundry. Pick up dog poo. Take out the trash and recycling. Check e-mail and start on the paperwork (bills, medical insurance claims, school forms).
12PM Go for a five-mile run. Finally, a good run!
1PM Grab a grapefruit and head back to the computer for a couple of minutes. Then I shower and go to the grocery store.
2:10PM Leave the grocery store, head to pick up Sarah.
2:50PM Pick up Sarah and drive to pick up Emma and Rachel.
3:20PM Pick up Emma.
3:28PM Pick up Rachel.
3:32PM We’re home — let the chaos begin! Since November (after six and a half years on the CLASS waiting list), we’ve had an attendant named Latasha come six afternoons a week to be with Sarah. This has been life changing for our family. She’s taken the day off, however, because it’s her daughter’s birthday,
3:40PM Rachel goes on the front porch to do her homework and Sarah escapes (to the porch) twice while I’m in the kitchen. I give up — have to lock Rachel out to keep Sarah in! (We have high locks on all the doors for containment purposes.) Emma starts doing her homework and reads her chapter book. Rachel comes in from the porch and helps Emma with her reading. I hand out snacks and then start dinner. I peel carrots and potatoes while chasing Sarah.
6PM Eat dinner. We usually eat as a family with Trent when he is in town, but he is late tonight. It’s an easy night — no softball practice or swimming practice for Rachel. We’re all home and we eat on time.
7:30PM Trent’s home! I bathe Sarah and read to her. Emma and Trent work on Emma’s bear project for school. Rachel goes to her room to study for her math test. After I put Sarah to bed, I go back to my desk and hang out until Sarah is asleep.
8PM Make sure Emma and Rachel are ready for bed. Read to Emma, visit with Rachel. Lights out.
9PM Clean the kitchen and do another load of laundry. Pull Sarah’s medicines and tube food and give it to her. Make Sarah’s lunch for tomorrow.
9:40PM Sit with Trent and make him watch a partial episode of Saturday Night Live.
10:30PM Bedtime! Hey, this was an easy day!