For the past several years, Jessica, Namine, and I have been asked to speak at the Medical College of Wisconsin. Our audience is always students belonging to a few different focuses — some to become doctors or nurses, some to become pharmacists. In any case, we are always happy and willing to share our story.
When we first gave our talk, it focused more on what we have done in order to give Namine the independence she craves in the home and out in the world. Of course, we could never have done this alone. My aunt has built so much for Namine, from her first wheelchair and her first sink at floor level, to a redesigned closet and her kitchen counters. Namine’s therapists have done so much for her as well, from building physical strength as well as providing encouragement and motivation.
So much of our first talks focused on how families — often feeling overwhelmed by the sudden influx of new and scary information about their children’s needs — can be encouraged and helped by hospital staff. As our audience grew from future doctors and nurses to include pharmacy students, however, we also had to broaden our talk’s focus.
This year, due to COVID-19, we gave our talk via Zoom video chat. Aside from that (and despite some technology issues which were resolved relatively quickly), we think it went well. We expanded our talk to include the ins and outs — much of it learned through trial and error — of medication. Namine has had dozens of medications throughout her life, some liquid and some solid, some refrigerable and some room temperature, and we had to figure out a system for keeping it all organized. We tried to communicate our past frustrations with future pharmacists in order to help them avoid those same frustrations with other parents.
There is a Greek proverb which I like very much:
“A society grows great when old men plant trees whose shade they know they shall never sit in.”
We will not benefit from the experience, advice, and lessons learned which we share with the MCW students. That’s not the point. We believe that by sharing information — and more importantly, compassion — we as people, as a society can better ourselves. Everyone’s needs matter. New parents suddenly thrust into taking care of a medically fragile child; a child with disabilities raised to be independent in a sometimes hostile and inaccessible world; doctors, nurses, pharmacists, and physicians learning new and better ways to treat their patients: all these and more are deserving of love which the world does not often give.
It’s our hope that you (yes, you, dear reader) see the ways in which you might show love in an often loveless world. We know firsthand how difficult that sometimes is. We know, yet we believe that ours — and yours — is a love worth fighting for.