As I mentioned in the last post, we do have the occasional difficult day. It’s rare though- maybe once every 4 or 5 weeks, and it is usually caused by a bunch of little inconveniences thrown into our plans. We’ve become *quite* adaptable these days, so it takes a LOT of inconveniences to accomplish this, but it still doesn’t make for a terribly interesting story! (Feel free to skip down to “The catch” and you won’t miss much.) But here’s a peek at a rough day for us; one day a few weeks ago comes to mind:
9AM: On the road to an 11am appointment at the children’s hospital: My sister kindly joined us to video the appointment for Greg since we were hoping to receive big, good news about June. The commute-car seat-stroller-doctor-appointment combination never bodes well for diaper containment, so together we deftly handled the first baby wardrobe disaster.
11AM: Appointment: We didn’t receive big, good news. We didn’t receive bad news either, though. We were back to wait-and-see for that particular specialty. There was hope that we could be worked into another specialist’s schedule that day to save us a trip later, so we hung out for a leisurely lunch.
1PM: Leisurely Lunch: I enjoyed good conversation with my sister while we waited. We navigated another surprise wardrobe change for June, I attempted unsuccessfully to nurse a very sleepy baby, and my sis scoured the area for a non-dairy dessert for me, also unsuccessfully. I was having trouble feeling full on my new non-dairy diet, and the hunger of a nursing mom is a fierce foe. Also, all of these events underscored the fact that we didn’t really know what was happening with June’s digestion and growth* (and if my cutting dairy was even helping) and that was the specialty we were trying to work in that day. But finally we heard that they couldn’t work us in, so we headed out. I grabbed some Oreos at a gas station (which alarmingly, contain NO dairy) and downed all six cookies in the time it took me to u-turn in front of the station. I was only slightly self-conscious about eating like a savage in front of my sister, but well, she’s my sister so it’s ok.
4PM Commute Prep: After dropping off my sister, I found traffic leading to the freeway at a dead stop. That’s when June finally woke up and was hungry. I found street parking and held, fed, and burped her. But the return to the car seat plus a necessary bout of suctioning resulted in vomiting of the *entire* big feeding, which showered down June’s clothes and pooled in her car seat. Losing a feeding was yet another point of worry for her growth and GI health; additionally I had only brought three outfits for her, so she had nothing left to wear. And she had to spend the commute in the sticky smelly seat in any case. So I took the wet outfit off of her, draped a blanket over her and under the seat buckles, and headed back to the gridlocked traffic.
4-6PM Making Our Own Stop and Go Traffic: I made it 15 minutes down the road and onto the freeway when June’s pulse ox alarmed because the trach needed to be suctioned. She rarely needs suctioned while I’m driving, but June was crying which congests the trach. I pulled off the freeway, hopped in the backseat to suction (if needed I can stay in the front and reach over the back of the rear facing car seat to suction instead), then reentered traffic. After entering the tollway, I remembered I was in a rental since our Prius’ hybrid system ran low on magic or something the day before and needed service. So, I cut over to the dreaded coin toll booth lines, decorated with signs chastising me for not having an EZ tag. Very uncharacteristically, I had to pull over to suction the trach every 15 minutes the *entire* way home. Incidentally, it seems like we’re often driving through questionable, littered, burglar-barred areas when she needs tended to promptly. I repeated the toll both entrance-exit exercise a few times and eventually just braved the free feeder road with lights instead for the rest of the way.
6PM Final Stretch Prep: At the last stretch of highway to our house, I stopped to feed June and give her extra rest before getting back in her seat. I didn’t know the area well, but the abandoned shopping center and run down WIC office we were parked at didn’t seem particularly welcoming. Poor planning meant that while corralled in the back seat I left the car running, missed a cell call, couldn’t lock the doors, and I was angled parallel to stopped traffic a short distance away. “Hello, folks!” I thought. “Yes, I’m trying to nurse discreetly and my naked baby and I are covered in spit up. Please don’t carjack us.”
6:30PM Final Stretch: I remembered that I would need to exchange cars at the dealership on the way. I was deliriously- but specifically- hungry so the emergency trail mix I had wasn’t helping. Just then the hospital called, and I fumbled with the phone to connect blue tooth on the rental. I confirmed wearily that yes, we could be there for an 8am appointment the next day, meaning I’d be back in traffic in 12 hours. I had already been driving for 2 hours, so I also called my mom and hubby to coordinate since it seemed I wouldn’t be home for Rowan’s bedtime.
7PM Musical Cars: I arrived at the dealership to turn in the rental. Seeing me juggling the stroller with a pulse ox, suction, emergency bag, backpack, dirty clothes bag, big car seat base, car miscellanea, and a blanket-clad June *and* pulling an oxygen tank behind us must have been quite a sight. I can tell you I never had to open a door myself. And a stranger allowed me to skip the line to return the car, thankfully. Then I was back on the road home….right after I installed the car seat base of course.
8PM Rest: I finally staggered into the house and croaked to husband extraordinaire, “I’m…hungry….” He’d put Rowan to bed already and was prepared to take June for the night or to make me dinner, or both if it was humanly possible.
The catch (Redemption)
We had quite a few inconveniences crop up, from disappointment to hunger, worry, traffic, serial baby wardrobe bombings, constant emergency pit stops, and car trouble. Alone these things are easily managed, and thankfully they rarely attack all at once like this. *But* we still can’t help but feel grateful even on the rough days for two reasons:
First, even a difficult day like this is filled with examples of love and care others have shown us:
– My mom watched Rowan (as she often does for mid-day appointments)
– My sister accompanied us to the hospital *and* videoed *and* made us a CD of it
– Cafeteria workers gave us a free dessert when we were looking for dairy free items
– My wonderful hubby was helpful, supportive, and resourceful as usual
– Strangers opened doors for us (they do so often, while beaming at June and/or Rowan)
– A stranger helped us skip the line
– Actually the rental car itself was a huge blessing- the day before, the service rep graciously approved free rental car use even though we declined some of the qualifying ‘major service’ package, *and* we had checked out late in the day when only an old Yaris was left for rent, but somehow our rep snagged us a brand new, decked-out Corolla with only 14 miles on it instead. And he didn’t even know about June or her needs, he was just a nice guy I think.
And secondly, our “rough” days now are insignificant compared to when June was in the NICU, when we contended daily with this hospital commute and child care logistics but June’s health was also uncertain. All of the time we’ve had her at home with us and healthy has been wonderful and easy by comparison.