I can easily write about our days – our routines, our challenges and more – but sometimes it’s even better to show. I can describe about what bath time is like, or how much Aquaphor we use and how it builds up in our laundry, but until you see a photo or video, it probably doesn’t really sink in. So in honor of Ichthyosis Awareness Month, I’m going to run a couple of posts showing one of our days through photos (and linking to some videos on Instagram) to give you a visual of our life with Harlequin Ichthyosis…
It’s a Tuesday, which I always love. There is something so simple about Tuesdays, and it’s also a day with a little structure, as Brenna has therapy at 10:00 and Connor has gymnastics at 11:00 every Tuesday.
My alarm is set for 5:45 a.m., but Brenna’s crying wakes me up at 5:15. She’s sitting up in her crib scratching her head, so I put on medical gloves and get out a tub of Aquaphor, which is sitting in a wipes warmer to stay warm. I take a small dollop of Aquaphor, rub it all over her head and put on a new hat.
I try to lie down in my bed again to get 20 more minutes of rest, but Brenna’s crying again at 5:30. She’s scratching her arm now, so I repeat the process above and pull down her sleeper sleeve to cover her skin and try to alleviate the itch. (Evan was up with her at 2 a.m. dealing with scratching and restlessness too.)
After my shower, I make coffee and read my Jesus Calling devotional. I’ve been slacking on this lately, but I pull it out today.
Right around 6 a.m., I sit down on my desk. I have a to-do list I made the night before to work on – emails to return, a blog post to work on, and a new freelance article that was just assigned to me for a local magazine that I begin to plan out.
A little after 7:00, Evan comes down to get breakfast. We chat for a bit and he leaves for work around 7:15 while I headed upstairs to dry and style my hair.
Connor gets up about 7:30, so I head back downstairs with him to get him some juice. He usually doesn’t want to eat first thing, and Tuesday and Thursdays we usually take our mornings slow, so after some conversation and cuddling, I turn on a Disney show for him to watch.
I pull out my menu plan to figure out the week. I usually do this the weekend before, but we’ve been out of town. I’m keeping things simple this week and I mostly need to stock up on perishables at the grocery store since we’ve been gone. I also plan for some freezer cooking. I’m going to make these egg and sausage muffins (but with roll sausage, not links), and sausage and peppers (we serve over noodles). I also plan to double a delicious recipe for cheesy chicken spaghetti casserole and give one to my sister-in-law, who is expecting her 7th baby in July.
At 8:15, it’s laundry time.
First, I soak Brenna’s clothes in the sink with hot water and OxiClean. I’ll let these soak for a few hours before throwing them in the washer.
Our laundry room at our new house has two washers – one for Brenna’s clothes and one for the rest of us. It’s makes laundry so much more efficient and helps save our clothes from Aquaphor!
At 8:40, I grab cereal bar for breakfast, and sit back down at the computer to do a few more tasks. Time gets away from me, and so I run up to wake up Brenna about 9:15. She’s not a morning person, though she will need to start adapting to earlier mornings each day once she starts school 5 days a week in August!
Brenna is usually slow to get going – she’s both tired and probably a bit sore in her skin and joints. She reminds me of a little old lady in the mornings 🙂 She often has her breakfast in bed, because she’s a diva. (Actually, it’s more to save time, so that she can move slowly but also at least be starting breakfast and get some energy from that food).
It’s Aquaphor time. I get her completely undressed, wipe Aquaphor all over her body, and get her dressed in her outfit. I end up with some grease streaks on my arms, which I rub in (I have the softest forearms, if you were wondering…) Connor is also upstairs getting dressed at this point too.
We all head downstairs for breakfast. Connor loves sitting at the breakfast bar whenever possible. I pull out banana bread for my second breakfast from the freezer, and I let the kids choose their meals – sausage for Brenna and homemade banana muffins for Connor.
Bring on the protein!
I pack up some snacks (pepperoni and goldfish crackers, and waters for both kids) and we head out the door about 9:52 a.m. for 10:00 therapy. I love living close to school!
Today at therapy, Brenna’s OT works on arm strength and lacing and letters…
We have this cute little therapy room to ourselves and Connor always busies himself with whatever activity Brenna isn’t doing. I usually divide my time between conversing with Brenna’s OT, cheering Brenna on, and playing with Connor.
I usually drop Connor at the gym, and use that 30-45 minutes to run errands since we’re close to all the stores. Today, we head to Old Navy, so I can get some new jeans (haven’t bought new jeans since November 2013 – it’s probably time 🙂 )
With 15 minutes left of gymnastics, we head in to watch Connor finish up. He lights up when he sees us every time and gives us big waves.
The 25 minute drive back home is when we all start to wear down. The kids are getting hungry and demanding, and I’m worn out from a long morning. I could really use some peace and quiet, but it never happens, and my patience wears thin.
Once home, I fix a very quick lunch for the kids, and I step away to do a quick laundry change (and let’s be honest, to get some quiet).
I drain the sink with Brenna’s clothes, and a lovely little Aquaphor ring is left for me to clean.
The clothes then go into the washer on a hot load with free and clear laundry detergent and lots of Dawn dish soap. (read more about our laundry routine here. It’s changed a little at our new house, but most of it still rings true.)
It’s around 12:45 now, and I help the kids clean up from lunch. Brenna is tired and wailing about wanting her binkies, and I’m more than ready for a break to re-group. We all head upstairs for one of my favorite times of the day: Quiet Time! 🙂