READING TIME: 4 MIN
Saturday mornings are special for me.
Sometimes my alarm goes off first, sometimes I hear Gabriella’s plaintive urgings through the monitor and shut my phone off before it rings, but either way they always coincide. It doesn’t matter that I’ve got the ring turned to the lowest setting. Her ears are attuned to the slightest sign of wakefulness in the house.
I’m a morning person, and I look forward to getting her ready, so I rise with ease. Not to mention that it’s often between 7 and 8, later than our Monday-to-Thursday wake-up at 6:30 to let the nurse in to prepare her for the day program.
I covered Saturday mornings long before I retired last year. It seemed the least I could do, with Lisa handling weekdays while I was at work. That gave her a free start to do whatever she wanted every week. Now my wife does the same for me on Fridays, allowing me to begin writing as soon as I’m up.
It’s all about teamwork.
On Saturday, I’m downstairs in five minutes and Gabriella is thrilled to see me. (She, too, is a morning person.) I lay the groundwork on Friday nights, reminding her that I’ll be with her tomorrow, and she always seems pleased. It’s rarely so early that her nighttime formula feeding is still running, so I start by shutting off the pump. I give her Prevacid, her daily intake to control her reflux, then remove her G-tube from the port in her belly.
Then I brew myself a pot of coffee.
Our mornings together have a certain rhythm dictated by hygiene and medical requirements, but we find variety around the edges. Some weeks I need to replace the pads that swathe her below and above (a liter of formula and water is a lot to take in overnight). Sometimes (like this past Saturday), I change her and leave her in the bed watching a video on her tablet until she gets restless. At other times, I get started right away.
I clean her up (although it’s usually the nurses at night that give her bed-baths) and dress her. On some Saturdays I present her a pair of shirts and let her choose her own. This week, she picked a pink top with an animated whale. She was pleased with her selection.
This Saturday was extra early, so I chose not to play music. Years ago, I would cycle through a variety of stations, but now salsa is her favorite.
Once she is ready, I transfer her to her wheelchair. I Velcro a back-brace around my waist to ease the burden. I know I’ll have to get used to the Hoyer lift, employing it seldom enough that I’m leery of running it by myself, and I try not to bother Lisa with anything on Saturday mornings.
Then comes the Nebulizer. Once I add the liquid drug and fit the clear plastic mask from the bridge of her nose to her chin, we begin the first breathing treatment. Often she inhales the mist without a struggle, but this week she tugged at the apparatus with her right hand. (It is convenient that she is less able to direct her left to obstruct the procedure, but it saddens me to think so.) Once I loosen her grasp, I calm her with a rendition of Little Peanutgirl, ending by making a wide ring with her hands from above her head to the side of her chair. By the time I reach the third of four verses, she has stopped fighting and usually lets me squeeze in the next medicine and start the second treatment.
After treatments, I retrieve her electric toothbrush. Brushing, too, requires a song, an irony because my daughter is the only one willing to listen to my voice.
After I wash her face, we move on to her medicines, so I put the extension back into her G-tube port. At this time of day, she gets three meds, to prevent seizures and promote hydration, plus a fourth syringe with water.
By now, she’s hungry. Breakfast used to be baby cereal (we even tried a mushy British concoction called Weetabix for a while, but she didn’t care for that), but now we combine creamy yogurt and applesauce, sprinkled with oatmeal. I never have a problem getting her to finish the full helping.
Our routine totals between 45 minutes and an hour … if I don’t have her watch a video in bed. (I work slower than the nurses during the week.) After breakfast she’ll enjoy Sesame Street episodes we’ve recorded on the DVR, and I’ll sit at the peninsula at her side. Gabriella loves companionship.
When she first qualified for nursing services, Lisa and I laid out the schedule. My one request was to hold off on Saturdays until noon, leaving the mornings to me. I cherish these times with my daughter.