Virtual speech at the medical college

Jessica, Namine, and I were asked to speak once again to the Medical College of Wisconsin about equipment, accessibility, and patient support.

It might be a little self-deprecating to say that we’re always a little surprised to be asked back, year after year, to speak to the medical college. Like last year, our talk was virtual; that’s been the case ever since Covid. And again, like last year, our target audience was a group of future doctors, nurses, and pharmacists.

Jessica and I are not, nor have we any plans to be, medical professionals. Our talk, as it has always been, is focused on how best to support Namine. How we’ve done so, and how we can continue to do so. From the perspective of future medical professionals, we hope some of our rambling (because we do tend to do so, for better or worse) can be translated to helping other, future patients.

Our speech, I have noticed, has tended to get a little longer every year. Namine keeps growing, you see, despite our admonishments to stop doing so. We always have a little more to say, and if there was no time limit at all, I’m sure we could talk of Namine forever. (Source: see the over 2,000 posts we’ve written.)

In all seriousness, we do recognize the gravity of what these students are endeavoring to become. Their job is to save lives — and Namine’s doctors have done so for her, time and time again. However, it is easy to believe their job ends when the patient goes home. That’s where our speech comes into play. Through our experience, we can direct hospital staff to existing programs, not only for disabled children (like sports through WASA or loaned equipment from Katy’s Kloset) but also for stressed caregivers.

We repeat, every year that we are asked back, that we did not have this information when we were new parents. We didn’t have the connections we do now, neither among other special needs families nor with the organizations. We want to share what we know, what we have learned, so that hopefully it eases the stress of raising a disabled child, even if just a little.

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