In February 2014, our infant son, Jack was diagnosed with a massive brain tumor which had wrapped around several cranial nerves. In the weeks that followed, Jack underwent an extensive brain surgery which saved his life but left him unable to swallow, to hear on the right side, and without the full function of his facial muscles. Jack has a tracheostomy and a g-tube which allow him to participate in daily life to a great extent. He also relies on a VP shunt for management of hydrocephalus and relies on a ventilator when sleeping.
If you’d like to start at the start and go back to the initial post, written at 3a.m. in a strange and terrifying hospital room, and walk Jack’s journey along with us, you may wish to start here.
This blog was initially launched as a means of keeping loved ones in the loop during the critical illness period. However, in the years that have passed, this blog has become a space for reflection, contemplation, as well as a tool for Jack’s community- and the author tries hard to keep it useful to others at best and at least mildly interesting at worst.
Why the title? Finding the Road has been a metaphor since the earliest days of the blog for the struggle to stay focused upon what one can actually do in the face of a frightening medical crisis and the disability that (for this family) came after. The presence of a road implies that there is a destination- there is a goal that guides you and your family forward. At first, finding the road means narrowing focus, regrouping, and attending to the individual steps that must be taken to save a life. As time goes on, finding the road requires acceptance of the contours of the landscape which are real and cannot be changed, and a determination to move forward- through swamps, dark nights, and brambles. Ultimately, finding the road means recognizing how your road intersects with others’. It is an attempt to hang trail markers, to make maps, to build community, to share wisdom. Though every family’s road is different, we must share them. Because survival is something that we do together.
The blog is maintained and authored by Jack’s mom, Meg Grotti, who is an instruction librarian at the University of Delaware. Meg is has an MLIS and an M.Ed., loves hiking, listening to podcasts while sketching, and gathering tools to help herself, her sons, and others fight the good fight and stay joyful while Finding the Road.