Greetings and salutations friends and family!
We hope you are enjoying your weekend as best you can (and if you lost count, yes it is the weekend still…)
I am writing this from a packed car- girls and dog in the back, Zach driving, listening to NPR’s “Wait, Wait, Don’t tell Me” show. I’ve been listening to this show for over 10 years- it’s one of those consistent things that brings joy to me, even more so now than ever as we search for some semblance of “normal” in our day-to-day.
We are headed back to Duluth from Lutsen, which is approximately a 1.5 hour drive south along the shore of Lake Superior. We are headed home for a doctor’s appointment tomorrow. We are meeting with a pediatric specialist in Duluth for Vivian, and then both Eloise and Viv will be getting lab work done.
As with the rest of the world, only 1 of us will be able to go in to see the doctor, so Zach and Eloise will wait in the car, and then come in for their lab work when Vivian and I are done. We are meeting with a specialist because concerns were raised during our telehealth appointment this last week with our pediatric doctor regarding Vivian’s muscle tone, stiffness, and arching of her back. It could be any number of things, but a referral was put in for us- and we get to FINALLY see a doctor in person. It’s a double-edged sword because we obviously want our girls to get the care they need, and are of course worried about any exposure going into a medical setting.
Our follow-up appointment for Vivian’s surgery in the twin cities has been pushed out again, so we are trying to take it in stride. We’re feeling a bit of anger towards the ‘RONA these days from taking away our ability to have the girls seen.
So…besides listening to my weekly NPR shows, I’ve been thinking about what else I have control over these days? As mentioned in a previous journal entry, I’m always striving to control my awareness around my thoughts, emotions and actions… I have also become aware of my ability to control my girls attire!!
It has come to my attention that almost everyone I talk to has a question, or a comment regarding seeing pictures of our daughters in giant bows. For those of you who do not know me, I am not, nor have I ever been, a “bow girl”. I was not into princesses, barbies, pink, etc. growing up. And in adulthood, some of the more typical feminine regiments have also been lost on me…make-up, accessorizing outfits…brushing my hair sometimes (just being honest!)… so I think people are surprised to see such “girly” attire on my mini-me’s.
Here’s the history- when the girls were 1st in the NICU we had NO control over there care. I remember a NICU visit early on, walking up to their incubators, and seeing giant pink bows attached to the girls breathing tubes on their heads. My initial knee-jerk reaction was “NO WAY…what nurse thought it was OK to put bows on my daughters?!” Then the next day, walking in and seeing different colored bows on the girls…it was like…Oh, they’re in a new “outfit” today. It quickly turned into something we not only looked forward to seeing, but eventually the bows were something we could take ownership over, and control, during such unknown times. We had no control over practically anything else at that point with our daughters besides what color bow we could attach to their breathing tubes on their heads…
Fast forward to today, and although we have WAY more control over the care of our girls, there is still so much that is out of hands with the coronavirus. So, just like the comfort of the weekly NPR shows, I find comfort in the bows still- it helps remind me that I do have a say in some things still (until the girls are old enough to make their own decisions regarding accessories of course..). Also, come on…no better time than the present to get out of my comfort zone and try on something new! - and not to mention my husband’s new found appreciation for all things pink.
SO there you have it- the story of the bows. I guess my hope this week is for everyone to get out of their comfort zone, rock a bow…wear some pink…and attempt to enjoy whatever it is that you DO have control over…
We hope to have positive news to share next week after their upcoming appointments.

Thanks for keeping up with the burns part of 4. With endless love and gratitude
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