May Update and Mother’s Day Thoughts

The Grotti family had a really fantastic Mother’s Day celebration last weekend, which included a hike, ice cream, and planting new lilacs in the yard.  Since I had been away at a conference for a few days prior, the kids were much more lovey than usual, and I think we all had a pretty tremendous time.

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Following Mother’s Day, we had numerous visits to the hospital for a combination of sick visits with Pulmonology, (Jack is fighting another virus and has been getting fevers pretty constantly for over a week) and follow ups.  Medically, there’s some positive news to share on several fronts.  Some time ago, Dr. Chidekel (Pulmonology) had given us the green light to place Jack on CPAP at nights rather than continuing with a breath rate on his vent.  With the exception of his most recent bout of respiratory illness, it’s been going very well for nearly 2 months.  This continued weaning from ventilator support is a great sign.  We’d love to say good bye to the incessant night-time beeping of that machine!  Our next visit is June 6th, and at that time we’ll schedule a sleep study to learn what’s really happening with Jack’s Co2 levels and with his brain at night.  This is likely to happen this summer.  There will also be another swallow study this summer to help us learn how much progress Jack has made with his eStim therapies.

Jack also had follow up visits with Dr. Piatt and Dr. Walter, who have continued to monitor Jack for any signs of tumor reemergence.  They indicated that we should have an MRI in November.  If that comes back clear, Dr. Piatt said he feels that “we can declare victory over that tumor”.  Another amazing piece of great news!

Jack wowed Dr. Walter with his spoken English skills–particularly when he stuck his finger in his ear and held it up to Dr. Walter, saying, “I got some potatoes in there!”  (I’m sure oncologists could use a good laugh every now and again, but I was a bit mortified by that one…)

I was struck during my recent visits to the hospital at how comfortable –happy, even– I felt when I was there.  I tried to puzzle through this very strange feeling, and a talk I attended by Dr. Kimberly Griffin, who studies the identities of transfer students through the lens of intersectionality helped me to make some sense of this.  For any working mom, identities are always in conflict.  When you explain to the crying child that you have to go to work, when you explain to the supervisor who was expecting something from you that you have to go fetch the sick child, there is an uncomfortable clash of very important identities.  I’m a woman, a mother, a wife, a daughter, a professional, a scholar, an artist, a writer, an advocate, and an educator (and these are just the identities that spring readily to mind).  As this intersectionality theory points out- we are all complex, and these identities wax and wane in primacy throughout the day, the week, the lifetime.

Lately, following some pretty wild shifts at my workplace, I have found my professional identity to be much like a hot, brittle planet orbiting a bit too close to the core of the system for its own good.  Navigating the context in which that identity exists has recently forced me to aknowledge the gravity that I have (unwisely) given to this particular aspect of my self.  Being at the hospital takes all of those questions and those unrelenting self-judgments, and silences them.  That planet is knocked into a completely different orbit when I’m back in those hallways, looking at all that could have been, and all that we have accomplished.  I can have just a single, comfortable “me” when I am there, and no one faults me for that– least of all myself.

I find myself mulling over this lately.  Is there a way to meld my professional life with this other identity?  Is there a way to take all of this theoretical and practical knowledge of information literacy specifically, and education and learning more broadly, and apply it to help other parents of a medically complex children? Is there a way that I can give back?

… I have some ideas.  But that will have to wait until the next blog post!

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