Regular Old Week

 

Saturday

Our family attended our first quincinera! While we could have taken the whole family, we decided to leave the littles at home with Daddy, so I got to take out my three bigs to a Mass and fancy party.

Working through medical PTSD doesn't necessarily mean getting rid of "triggers" (hate that word), but learning how to recognize the uncomfortable feelings and say to them, "Hey, I see you, and nobody ever died of panic, nor have I yet. You and me, we'll just sit together until you decide to go away." 

I got to recognize some uncomfortable feelings while driving to the quincinera. You see, since 11 months ago--when we entered the hospital for what should have been five days--I haven't gone anywhere in the evening, in the dark, except for that hospital. So driving down this main road in the dark reminded me tremendously of when I would switch with Chris at the hospital, whether late at night after I'd put all the children to sleep or in the wee hours of the morning when they were still asleep. I would just leave all my children in their beds and hope nothing bad happened, I'd drive the 20 minutes to the hospital, and Chris and I would switch places, him getting home within an hour of my leaving. Anyway, recognizing and living with these uncomfortable feelings is all part of the process.

Sunday

A certain wee four-year-old threw up and it coated six steps of the carpeted stairs, the wooden floor, and around the corner into the laundry room . . . and that was all before he came upstairs crying, and crawled into my arms, spreading the vomit onto my outfit and our king bedding.

I took a picture but I won't share it here. Ha.

On my stepfather's birthday, we visited my mom and stepfather's graves to clean them, deliver flowers, and pray the rosary. Thomas's illness and the very "thin margin" Chris and I have for anything extra means I had not been to the cemetery in 16 months, when normally I go a few times yearly.

Thomas praying the rosary

Then we had our inaugural bonfire of the fall! S'mores all around!

Monday

In-person school day . . . girls' choir practice . . . boys' altar serving . . . Fraternus . . . .

Tuesday

School. All. Day.

When I increased Thomas's tube feeding blenderized food overnight, that meant the amount he was receiving no longer fit in one bag. For a month, I've been waking up once in the middle of the night to add the rest of the food to his bag, and this is in addition to numerous other wakings to help little ones, as well as my own insomnia. The tube feeding company that sends our supplies said I had to wait until the next month to receive larger bags since they had just sent us a whole month's worth of the regular bags, and that seemed fair. Well, today was the day that the larger bags arrived, which means I can fill them once at the beginning of the night and eliminate one waking from my night. This made me giddy with happiness because that's the kind of Very Small Thing that brings me joy in my life right now.

That's a big bag.

Wednesday

Doctor's appointment #1 . . . School All Day . . . Fidelis . . . . 

It may not be pretty enough for Pinterest, but I made homemade, no-sugar-added apple butter for my sweet Thomas, who loves it. We had discovered no-sugar-added apple butter at the local Lineberger's Farm and it had low-enough sugar for Thomas to enjoy a teaspoon of it on a sandwich. When it ran out, I figured I'd better learn how to make it myself rather than drive 30 minutes each way to buy it!

Thursday

In-person school day . . . doctor's appointment #2 . . . haircuts . . .

In the evening, the 12- and 14-year-olds got to attend the annual corn maze for homeschoolers. It is a neat opportunity for homeschoolers to have fun just with older kids their age instead of having all the little sibs around. (Dad didn't take pics.)

Friday

Doctor's appointment #3 (that lasted a surprising 90 minutes plus drive time both ways) . . . School All Day . . . piano . . . 

Hockey was cancelled so we enjoyed a movie night. The kids 10+ and parents watched Blue Miracle (PG) on Netflix. It's based on a true story of a couple in Cabo San Lucas, Mexico, who were in financial debt keeping their boys' orphanage afloat. They entered a local marlin fishing competition with hopes of winning prize money to save the orphanage. This movie is a rare win for homeschoolers who can sometimes get tired of watching only movies from 50+ years ago. This film has beautiful cinematography, high production value, a big name actor (Randy Quaid), and touches on real and dark issues: fatherlessness, gang violence, the ghetto, poverty. Yet it contains not one single swear word and no immodesty of dress. The director was able to show gritty scenes and danger at times to make his point, without it being a sin for us to watch it. For example, one scene is set in a bar, but all we see is a close shot of the two men at a small table, with neon light signs on the walls, and the good man has drunk only one beer while the bad man has a half empty bottle of tequila next to him. Adults will understand that bad man is a drug dealer by references to "I'll let you just do a couple of easy runs a month," and the good man saying, "That life is behind me," but younger kids will have no idea and parents can choose to explain our not. This movie shows our protagonist having to make two very serious ethical decisions at great personal sacrifice: he makes the right choices. We also see his foil (Randy Quaid) turn his life around and embrace fatherhood. The overarching theme of the movie is the importance of fatherhood and I recommend it.

Miscellaneous

In all the cracks, I'm writing Thomas's book. I thought I'd be done by now.

This week, I was in daily communication with the nephrologist getting a handle on Thomas's lifetime risk of kidney stones and osteoporosis and setting new fluid intake goals for him (as in, higher than the zero ounces of fluid he'd prefer to drink). I had a phone meeting with the nephrology dietician about a low oxylate diet. All of this involved reading various medical journal articles as well. I shed some tears about it all.

Also we were in daily communication with the surgeon because Thomas had some very concerning symptoms for five days, but they dissipated. It adds a whole new layer to a person's week to be wondering for days whether your six-year-old is headed into emergency surgery for a bowel obstruction or whether everything will resolve itself . . . .

I greatly appreciated reading Better than OK by Kelly Mantoan and recommend it to any parents of kiddos with any type of disability.

I've now ordered Awakening at Lourdes: How an Unanswered Prayer Healed Our Family and Restored Our Faith by Christy Wilkens. This looks like it could be very helpful to me right now and I look forward to it!