Mary and Connor Bales live in Coppell with their four children: Kathryn, 8; Coleman, 5; Libby, 3; and Hannah, 8 months. Libby and Hannah have both been diagnosed with a rare chromosomal abnormality, Trisomy 16p, of which there are fewer than 40 reported cases in the world. Connor is a pastor at Prestonwood Baptist Church in Plano, and Mary is a stay-at-home mom.
6am My alarm goes off, and it’s time to feed Libby and administer her three seizure medications. I snooze the alarm a couple of times before finally dragging myself out of bed. I head into her room, and I’m greeted by her happy sounds and smile. I change her diaper and hook her up to eat. Each feeding takes an hour, and she receives all of her nutrition through a g-tube. In the summer, Libby takes a break from her four therapies (speech, physical, occupational and visual). During the school year, Libby attends a local elementary school that is fantastic. We have seen such progress and growth.
6:30AM Spend time reading the Bible, praying over and preparing for my day. Check my calendar, return emails, check Facebook/Twitter, think ahead to dinner … I am taking dinner to one of Coleman’s teachers who just had emergency surgery. I set out meat to defrost and make a list of anything I need at the store. Luckily, the kids and I made cookies the day before. I make a salad and dressing and set out some rolls to pack up later.
7:15AM Take shower and get ready for the day.
8AM Roofers arrive to replace the roof from a hailstorm that damaged our home in April. Kathryn, Coleman and Hannah are awake. I make breakfast – something fancy like Eggo Waffles or cereal. I Feed Hannah a bottle and baby food. I follow up with ECI to schedule an initial evaluation for Hannah. I also call the office of the surgeon who will be operating on her eyes in July to follow up regarding the preauthorization sent in May – still no word! Finally, I make copies of explanations of benefits from our medical insurance to fax over to our health savings account to settle a question they have about recent charges at the pediatrician’s office.
9AM Our respite care provider, Savannah, arrives for the day. The six of us evacuate from the construction and banging on the roof. We head to the new splash park in Carrollton to meet friends. It’s overcast today, and it is actually a perfect day to play outside. The kids play and have snacks. Savannah and the moms visit and tend to babies who are too young to enjoy the splash park.
10AM Feed Libby.
12PM We change everyone into dry play clothes and bag up the wet things. Still avoiding the house under construction, we head to Chick-fil-A for lunch and indoor play with our friends – and some air conditioning. I feed Hannah a bottle.
2PM Head to the grocery store to get last-minute items to prepare dinner. Feed Libby and administer second dose of seizure medications.
2:30PM My husband, Connor, is on a mission trip in Burundi. He calls from Africa to check in and gives us an update. We love that with modern technology we can see him and talk to him daily.
3PM Head home, make dinner for a friend and pack it up. Kathryn and Coleman watch a movie at an extremely loud volume to overpower the banging on the roof. Hannah and Libby resort to their beds for a quick nap before the next trip in the car.
4PM Feed Hannah a bottle. Pack up the car with all four kids. Say goodbye to Savannah and head to Dallas to deliver dinner. Coleman is so excited to see Ms. Nancy! We run the dinner in, give a quick hug and then back in the car.
5PM Kathryn is off to a friend’s birthday party at Hawaiian Falls, complete with dinner and dessert; the rest of us head to church for dinner and Bible Fellowship. We stop and pick up fast food on our way to Plano.
5:30PM We arrive at church and eat dinner with friends from our class.
6PM Feed Libby.
6:15PM Check in at the nursery and drop each child off in his/her classroom. I head to my class for some much-needed adult time.
6:30PM We are all in Bible Fellowship, including Libby, who is ministered to in the Special Needs Bible Fellowship class at Prestonwood. Even sweet Hannah is rocked and prayed over.
8PM Pick up the three children in the nursery. Feed Hannah her final bottle and baby food in the church lobby.
8:30PM Pick Kathryn up from her friend’s birthday party.
9PM Head home for baths and bedtime. The two older children can take showers on their own. This is a huge help. I bathe Libby and Hannah. Everyone is tucked into bed with prayers. Lights out, music on.
10PM Feed Libby and administer her final dose of seizure medications.
10:30PM Get into bed and check email, Facebook and Twitter. Look over my calendar for the next day. Set my alarm. Turn on the TV for some down time. I’m asleep by 10:45pm. Ready to wake up and do it all again tomorrow! I love my life.
Diaries are penned by moms (and dads) in the Dallas-Fort Worth area. The authors volunteer to share a day of their choosing and are not paid or endorsed by Thrive. Send your diary to email@example.com. All submissions are subject to editing and may be cut for space.