About this Blog

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.

 

 

 

2 thoughts on “About this Blog

  1. Tracey

    Hi Meg,
    I just wanted to reach out an say ‘Hi’. I’ve only recently found your blog. It is near to my heart because our son, Zac, was diagnosed with a choroid plexus carcinoma last year – October 2015. Zac also has a twin brother. He was four when the tumour was diagnosed. It has nearly been 12 months since the day our world came crashing down. Since then it has been a roller coaster of positive and negative emotions. Zac carries the physical scars from his journey while I feel my husband and I carry the emotional ones. It has been a traumatic year; but as you note in your posts, it also snaps life into sharp focus. It is so much easier to see what is and is not important and it is so much easier to be grateful, excited and inspired by the small things in life. We recently went on our first family holiday since this all began – to see Zac jumping from the edge of a pool into the water screaming with joy and laughter, to see his smile after all he has had to fight through was worth more than anything I can think of right now. Someone told me when I had my boys that you don’t know love until you hold your children in your arms; I have learned that equally you don’t know pain until you think they might not see the next morning and I now know how truly deep love can be – there are many lessons to take from this journey but it is hard and it is traumatic and it is exhausting. We are fighting this battle alongside you – your road has been made all the more challenging with many long-term effects from treatment – we have faced some of these but not as many as Jack. Thanks for the great posts. Tracey

  2. Tracey

    Hi Meg,
    I just wanted to reach out an say ‘Hi’. I’ve only recently found your blog. It is near to my heart because our son, Zac, was diagnosed with a choroid plexus carcinoma last year – October 2015. Zac also has a twin brother. He was four when the tumour was diagnosed. It has nearly been 12 months since the day our world came crashing down. Since then it has been a roller coaster of positive and negative emotions. Zac carries the physical scars from his journey while I feel my husband and I carry the emotional ones. It has been a traumatic year; but as you note in your posts, it also snaps life into sharp focus. It is so much easier to see what is and is not important and it is so much easier to be grateful, excited and inspired by the small things in life. We recently went on our first family holiday since this all began – to see Zac jumping from the edge of a pool into the water screaming with joy and laughter, to see his smile after all he has had to fight through was worth more than anything I can think of right now. Someone told me when I had my boys that you don’t know love until you hold your children in your arms; I have learned that equally you don’t know pain until you think they might not see the next morning and I now know how truly deep love can be – there are many lessons to take from this journey but it is hard and it is traumatic and it is exhausting. We are fighting this battle alongside you – your road has been made all the more challenging with many long-term effects from treatment – we have faced some of these but not as many as Jack. Thanks for the great posts. Tracey

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