Sunday, December 11, 2011

Being an Advocate amidst Joe Six-Packs and Final Exams

Reader, forgive me ahead of time for using this Hopeful Parents space just to collect my thoughts from this last week.  I’m just catching my breath after a week in and out of the Pediatric Intensive Care Unit with our daughter.  Sylvie’s papa and my beloved partner bore the brunt of the hospital stress-taking our child into the ER at 3am with a high fever and shallow breathing. He was the one who got to sleep on the hospital cot amidst the hum and bustle of ICU staff duties.  He is the one who played advocate most of the stay, asking the nebulizer to be reduced so our daughter would stop shaking; he’s the one who does the math and questions the doctors and wants to know what her vitals really mean in terms of her health.  Sylvie stabilized pretty quickly, but I got to be at home with her sister, trying to explain to my very smart five year old why her sister was so sick and why she wasn’t coming home as quickly as we hoped.  Sylvie’s sister gauged her mood by colors:  “Mama, today I feel ‘gray’ that Sylvie is not at school with me;”  “Mama, today I feel a dark blue because papa and Sylvie aren’t home;”  “Today I feel dark, dark black because Sylvie is still in the hospital.”  I want my daughter to be able to vocalize her fears and feelings about her sister who is sick. I asked the teachers at school to keep an eye on Uma while her sister was in the hospital.  To express oneself without hesitation I believe is a key skill as advocates. We are rapidly becoming a family of fierce advocates. 

I can count on my left hand the number of times we have had negative experiences with medical personnel.  Unfortunately, one of those interactions occurred this last week in the PICU, as I sat holding my vulnerable and shaking child.  A doc came in, draped himself over Sylvie’s IV drip, expressing his concern about Sylvie’s swallowing and eating.  It’s a legit concern, and one we’ve discussed many times with our OTs, our primary doctor, our visiting nurse. Essentially—we’re thinking about it. But this doc, who the nurses later assured me was a nice guy, just waltzed in and starts being confrontational.  I told him so. I told him I didn’t like how he was talking with me.  Essentially, I don’t know this guy from Joe six-pack, and I told him that.  It was so instinctive to just tell this guy to back down and change his tone and then we can talk. He backed away, sat down in a corner chair, and then we did talk how best to get food into my baby’s belly.   I like that this advocacy mode is my default setting—it’s quite useful sometimes.  I like Sylvie’s papa’s advocacy mode even more—it used to annoy me, but now it’s extremely essential. Having a local quantoid in the house is very useful when dealing with the medical world.

We’re back home, Sylvie’s tried her new Make-A-Wish tub, and our refrigerator is filled with food from good friends.  I got a massage from my dear neighbor and friend last night, in lieu of another meal on wheels.  The girls’ school sent to the hospital get well cards, and Sylvie’s para-educator made some home visits once Sylvie was back home from the PICU.  We live less than 2 miles from a hospital that is able to provide quality health care for me and my family.  In the midst of my child’s latest hiccup, I can see that our move back to Vermont was a good thing on multiple levels.  Now, if I could just ask Sylvie to time her health crises a bit better so that they don’t fall the same time as my college’s final exam schedule, I think we’ll enter into this holiday season just fine!       


When Kirsten isn’t writing final exams and grading undergraduate papers as a professor of Communication Studies at the State University of New York, she tries to bake holiday cookies and hone up on her advocacy skills for her 5-year old (soon to be 6) twin girls.

1 comment:

  1. It's great to hear from your family--I always enjoy your posts and your descriptions about your sweet girls. I'm sorry to hear that Sylvie was ill, but I'm glad she's home and you are feeling good about how your family works together during these tough times. I especially loved Uma's color coded feelings--how creative!--and your examples of advocating. Have a good holiday!