Mike is an independent contractor in the insurance and oil industries. He lives in Carrollton with his wife Vanessa, senior manager of brand identity at Southwest Airlines, their two children, Preston, 4, and Gabriella (Ella for short), 7, who has Rett syndrome, and his mother-in-law, Lee Bromley, known as Nanny to the kids.
5:15AM Wake to the chatter of Ella. She's already excited to get up for school. I stay put for a few more minutes listening to my wife sleep. Her alarm will ring in another 10 minutes. She will more than likely snooze for another 10.
5:30AM I get Ella out of bed, diaper and PJs off and onto her special potty chair. Preston is stirring in the bed next to hers. I wash her face, brush her teeth and hoist her onto the changing table (she's almost outgrown it!). My wife comes in to check things out and to finish getting Ella dressed. She then attacks Ella’s hair. On days when Mommy travels for work, Nanny has to do Ella's hair or else she looks like Don King.
5:45AM I head downstairs to get Ella’s medications mixed into her high-calorie juice. We are desperately trying to put weight on Ella’s small frame. I make sure her arm braces and juice make it into her backpack for school. I set it on her wheelchair so we won’t forget it.
6AM Preston is up now too. I head back upstairs to tell him good morning and pick up Ella to bring her down for a cup of water while Mommy gets Preston cleaned up and dressed. Ella eats breakfast at school, which helps a lot since that can be an hour-long ordeal.
6:15AM I put on Ella's leg braces. Could there possibly be any more Velcro straps? She needs a light jacket today. I turn her Tobii speech device on so she can activate a few images. Her brother comes downstairs to play with her and her computer for a few minutes.
6:45AM I strap Ella into her wheelchair. So many straps. Everyone kisses her, and she is lifted onto the bus. The smile on her face reminds us that this is the highlight of her day.
7:30AM Preston, Nanny and Mommy eat breakfast, then Vanessa has to rush off to an early meeting at work. Luckily, she's already packed Preston's lunch.
8:15AM Breakfast is done, cartoons turned off and the living room isn't too messy. I put on Preston’s light jacket and shoes, grab his lunch bag and strap him into the car for the short drive to school. Afterwards, I come home and log into work.
12:30PM I take a quick lunch break, chat with my mother-in-law while she folds clothes, and text my wife to remember to pick up the new meds at the drugstore. She left me a note to schedule an appointment for Ella so I call the clinic and get placed on hold, of course.
12:45PM I log back into work.
2:30PM Time to pick Preston up from school. The days always seem to fly by. We talk about his day, talk about the fact that he had to sit out at recess, and practice the days of the week. His kicks off his shoes, and we both head up the stairs to clean up. Nanny has a snack ready for him. I squeeze in another hour of work.
3:40PM Ella’s bus pulls up. I run back down to get her off the bus. I get her out of the wheelchair and sit her on the couch to let her watch an episode of Sesame Street. Nanny washes her face and feeds her a light snack to hold her over until dinner.
4PM Ella has physical therapy today, so I sit at my computer and get more work done while Ella does her own work, practicing the sit-to-stand transition. I love to see her progress. She works so incredibly hard for the most basic movements.
4:45PM I take Ella out of her standing frame and leg braces (with all its straps), bring her up to her room and onto the potty chair. Preston follows behind us, and I bathe them both, one at a time, since Ella requires extra support in the tub. I do the best I can with her hair. Mommy will have to braid it before bed. I dress the kids in their pajamas, and the three of us head downstairs for dinner, something Vanessa pre-made yesterday.
5:30PM Meal time is over, and I clean up around Ella's chair. Today more food made it onto the floor than made it into her mouth. She seems to be having heart burn now, so I hold her for a few minutes while Preston plays with the toys he left out this morning.
6:45PM The garage door opens. Mommy's here! She eats a quick bite while her mom and Preston tell her about their days. I log back into work to finish the day.
7:15PM Time to carry Ella back up the stairs so that Mommy can play with them both a little, read a book and say prayers with them.
8:15PM I come up to check on everyone and give goodnight kisses. Vanessa gets out of her work clothes and heads down to work on her fundraising event, the Rett syndrome strollathon. I stay upstairs and watch last night’s game on DVR.
9PM My tired wife comes up to bed. We chat a few minutes. Together we go kiss the kids who are both fast asleep. Then we settle in to watch a show together.
