Chapter 15

To begin, I will say that I anticipated commenting more on this book throughout our book study than I have thus far. I am absolutely enjoying reading about Schuyler’s journey but overall, it can feel strange to comment on personal, real-life events, despite the fact that her father chose to put Schuyler’s story out there. Although I am not a stranger to reading non-fiction, most of what I have discussed with other people in past high school and college English classes has largely been fiction. Has anyone else felt funny at times commenting on the true life events of Schuyler’s life?

 

I think a lot of my thoughts above come from the fact that our chapters from last week plus this chapter, Chapter 15, have made me really curious about Schuyler today in 2016. While I promise to not give anything away (no spoilers!), I will say that I spent some time this weekend reading more about Schuyler today. I am a fan of Instagram and found myself perusing her father’s public account (account name: rumhud). Although it felt a bit like skipping to the end of the book, I really enjoyed seeing pictures and video clips of Schuyler. I have more answers about Schuyler’s journey than I should at this point in the book and at this point in her life than her family did, however, I felt like I had to see that little girl we’ve been reading about and discussing.

 

Now, to summarize Chapter 15: Fighting Monsters with Rubber Swords. This chapter is about Schuyler’s visit to see Dr. Dobyns in Chicago. The family stayed with Erin, another friend met as a result of the father’s blog. I can only imagine how therapeutic his blog must have been at that time. At the appointment, they had to face Schuyler’s MRI scans again. Here, we learned that they were told that “sixty to seventy-five percent of Schuyler’s brain is profoundly malformed.” The doctor explained what this meant in terms of functioning and seemed to stress the importance of alternative means of communication. I like that it was finally mentioned that speech therapy should focus on “improving her comprehension and communicative understanding” versus verbalizing, however, I see that sign language continued to be discussed (as well as its limitations) with no mention still of pictures or a voice output device. When discussing Schuyler’s cognitive abilities, here they were told that they should “be ready for the possibility that she’s going to be under your care for the rest of her life” rather than the promise Yale supposedly gave them that Schuyler would one day “live independently.” All in all, this appointment/chapter absolutely brought more heartbreak (“One more string of medical terminology that, if translated, would just break our hearts a little more”), but I think it also did one of the things her father hoped for early in the chapter: “We wanted answers, not comfort”. After some thoughts on God and religion I thought this chapter ended beautifully. I love the imagery created by his descriptions of Schuyler and her mother in the airport. “That was it. She didn’t stumble, and she didn’t fall.” To me, this part seems foreshadowing of hope and a positive future.

 

I don’t know how public this blog is but if Schuyler and her father ever find their way here and read what we have been writing, I hope they realize the impact sharing their story has had. I appreciate my eyes being opened to a diagnosis I had never heard of prior to reading this book, one that can have such a profound impact on the reason we do what we do: communication.

 

-Candra Grether, SLP at The Phoenix School of Discovery and Jeffersontown High School

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5 thoughts on “Chapter 15

  1. I think that one point made early in the chapter is that people/parents hear as much as they can receive at the time. Julie hung on to the hope that some day Schuyler would be able to live independently. The author surmised that the statement was probably presented as a possibility and not a certainty. “Dobyns was right, there was no way anyone could ever say something like that for certain. In the absence of concrete assurances, the mind builds it own.” And I think that during the times in my life that I have had to receive bad news, I hung onto possibilities, and in the absence of concrete assurances, my mind has built its own.
    I continue to appreciate how this author shares his heart.

  2. Carrie says:

    What a great summary, Candra! Yes, now that you mention it, I guess it does feel a little odd to be commenting on other peoples’ personal lives. I do think, though, that the author would be happy that we chose his book for our study….to know that he is helping SLPs further their knowledge and better serve kiddos with communication difficulties. Pam, I also appreciate the author sharing his heart. He is very insightful and has definitely found his calling.

  3. Sarah Coty says:

    This chapter made me realize that all of his connections in the blog world gave him access to more professionals as well as the means to get there. This is kind of besides the point of the point but I was in awe with the ease that he was able to connect with people and essentially form close enough bonds that they opened his home to his family. To comment on the feeling weird commenting about someone’s life, I do agree that it does. At times I can easily forget this is non fiction but then the reality hits me that this is someone’s life. I also felt like I was on an emotional roller coaster the entire book as they had hopes then those hopes were crushed, then new hopes formed, then change of plans. It really got me thinking about our kids with significant delays and physical challenges and what their family goes through everyday.

  4. Chelsea says:

    Sharing a story – putting yourself out there for the world to hear – it’s cathartic. I hope Schulyer’s family does get to read this blog, and can understand the impact that their story has had on our group of clinicians.

  5. lindsey noonan nicklies says:

    This chapter evoked so many emotions. Working with children with disabilities, it is so easy to get caught up in their weaknesses, what they are unable to do and how it is impacting them now and how it will impact them in the future. It doesn’t happen very often that I take into account the toll the disability is taking on the family. Not being a parent yet, I can only envision my life with children. No one envisions a life where their child has as disability. This chapter makes me really sympathize with Robert and Julie. This was not the life they envisioned and now Schuyler’s monster has taken over their life. I can’t imagine the hopelessness of watching your child struggle and not being able to help. They are struggling with disappointment every time they achieve a new possibility of hope. I think they are doing a wonderful job as parents and continue to search out anything/everything. I hope that as the story goes on, they continue to find hope each time a Dr. shuts down their ideas for the future.

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