Penny Howard lives in Carrollton with her husband Dustin and their two children: Lily, 5, and Harper, 3. Harper is non-verbal and non-mobile because of a life-threatening genetic disorder known as CDLK5 (cyclin-dependent kinase-like 5) disorder. In honor of Harper, Penny founded Hope4Harper, a nonprofit organization designed to provide hope for those living with CDLK5. To learn more, visit hope4harper.com.
5AM Alarm goes off.
5:27AM I actually get out of bed. Make coffee, shower, get dressed, make Lily’s breakfast, make Harper’s breakfast, pull Lily’s allergy meds and pull Harper’s meds for the day … she has a shoebox full, no lie!
6AM I wake up Lily, who does not actually get up until 6:30 a.m.
7AM Dress both girls.
7:30AM Load everybody up and drive 22 miles to Southlake for a doctor visit.
9:45AM Leave Southlake with a slightly more comfortable feeling about where we are with Harper’s and Lily’s health and wellbeing. Drive 25 miles to Grand Prairie because my husband used my car last night and left his wallet in it.
10:20AM Drop off wallet and give Lily the cash in it as payment for the extra trip.
10:40AM Stop at Hobby Lobby to get Velcro to help modify one of Harper’s many splints.
11AM Home. Unload, fix Lily’s lunch, fix my lunch and fix Harper’s lunch. (Wow! I get lunch today.)
11:15AM Nurse struggles to feed Harper lunch and medication. Lily eats turkey, grapes and a cheese stick with water while watching Olivia.
11:30AM Strip the sheets from the girls’ beds and toss them in the washer. I eat “Against All Grain Pesto Pizza” and drink a Perrier while writing an email and setting up feeding therapy with Our Children’s House of Baylor.
12PM Move sheets to dryer and put blankets in washer.
12:15PM Grab Harper’s therapy bag with all her splints and load everyone up.
12:23PM Arrive at Easter Seals North Texas for occupational therapy session.
1:15PM Head home after a session spent working on Harper’s sensory issues to texture and touch.
1:30PM Nurse leaves after unloading Harper and finishing up her charting.
1:40PM I contemplate staying on the floor lying comfortably next to Harper but decide I must finish my day.
1:45PM Change Harper’s diaper, give her some water, have Lily use the bathroom and head back out the door.
2PM Arrive at my previous place of employment, Bio Aquatic Alpha Energy Labs, to have my portion of our special needs trust notarized and copied. Scan Harper’s recent medical records and have a friend email the records to me.
3PM Leave Bio to take Harper back to the chiropractor; in therapy she seemed to have issues with her neck.
3:30PM Comfort Harper in the waiting room during a six-minute seizure before Harper sees the chiropractor for another adjustment. She just had an adjustment yesterday when she had her jaw put back in place – an effect of seizures. It’s OK. It was needed, and all is well.
3:50PM Head back home. This time I’ll stay there for the night.
4:15PM Unload everyone at The Howard House. Move the blankets to the dryer and put Harper’s clothes in the wash. Empty the dishwasher and start dinner. Lily gets bacon cooked on the stove (she doesn’t like it microwaved), raspberries, blackberries and a cheese stick. Harper gets apples.
5PM Feed Lily and Harper. This time I decide to put Harper’s supplements through her tube and see if she’ll eat.
5:30PM Lily gets a bath. Clean up from dinner and leave Harper to digest. Take the blankets from the dryer and put Harper’s clothes in. Put the sheets on Lily’s bed while Harper’s aide fixes Harper’s bed. Thank goodness for help!
6PM Lily gets out of the tub. Daddy’s home!
6:40PM Daddy will bathe Harper while Lily and I take Petey on a walk down the street and back. I grab the mail on my way back in.
7PM Now that the kids are bathed, the towels go in the washer. In case you haven’t picked up on things, Tuesday is when I clean all the kids’ things (clothes, towels, sheets). Lily practices her piano. I sort mail. Felicia, the aide, holds Harper. Harper pulls her tube out about half-way and we reinsert.
7:20PM I make my dinner and Dustin talks to me about his day. I hear, “Wa wa wa wa wa wa.” Just kidding. I eat while Dustin cooks his dinner. Dustin eats, and I wonder why I ate so much.
8PM We sit looking at our empty plates thinking should we check on Felicia and the kids … or just let it be. We decide it’s story time. I put the dishes in the dishwasher, and Lily picks out her book to read. Yup, she’s a reader!
8:10PM Lily reads Biscuit Visits the Big City.
8:30PM Lily brushes her teeth and is off to bed. Harper gets another tube of water and her relaxation supplements.
9PM Felicia heads out. Thank you for the help! Dustin attempts to hold Harper, but her hypersensitivity is really kicking in, so I put her to bed.
9:10PM Send three emails.
10:02PM I’m done. I’m going to get a drink of water and go to bed. Tomorrow comes early and stays busy.
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 editorial@dfwthrivemagazine.com. All submissions are subject to editing and may be cut for space.
Published February 2014
