Chapter 13 (Bug Fairy) and Chapter 14 (Note to Schuyler, Christmas 2004)

Chapter 13 starts out with “Halloween was always a strange day for Schuyler, or rather for me and my perception of her place in the world.” The author discusses how everyday was like Halloween for Schuyler because of her monster. This year, she dressed up a tiny little fairy (somewhat punkish J). He considered it the only night where Schuyler was disguised in a way, but wondered when it would finally come out that she’s not like all the other kids. Although Halloween night is supposed to be a fun and happy night, the dad was melancholy in a way because he started to see how she was beginning to realize that she’s not like all the other kids. I like how he mentioned “Schulyer was going to be a happy little girl regardless of how much I wept and fretted and tried to take all onto myself.” It seems to me that a lot of special needs children (like Schulyer, or children with Down Syndrome for example) are overall happy people. Although they have a disability, it’s not going to affect their attitude on life, they always are positive and bring joy to others in life. And I think the author is trying to make a point that it’s hard to accept that, but being reminded about the happiness his child holds give him a reminder. Any thoughts on that?

Chapter 14 is a letter that Dad wrote to Schulyer on Christmas of 2004. To me, it was a very emotional letter with lots of emotions-anger, hopefulness, and immense love. Two quotes stood out to me in this letter 1. “I only have one true wish in my life. Just one. I’d throw the rest away in an instant, I’d forgo any happiness in my own future if I could only have my one true wish, and that is for you to be happy.” 2. “I’d given anything for you, Schuyler, anything at all to make you happy and to fix what’s broken and to set you free in a world that you’re equipped to live in I’d burn down the whole world for you if it would change things.” These quotes show how much he loves his daughter and also how much he wishes thing were different. What do you think of the letter?

–Erin Ruppely, SLP at Kennedy Montessori/Central High School

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4 thoughts on “Chapter 13 (Bug Fairy) and Chapter 14 (Note to Schuyler, Christmas 2004)

  1. How appropriate to read the Halloween chapter during the actual week of Halloween! When I read through the two chapters, I could feel the raw emotion and feelings of helplessness that Robert faced daily. Have you ever wanted something so desperately? It is difficult to keep faith and hold out hope for the future. We all accept and face our own “monsters” in life in different ways. It is interesting to read of Robert and Julie’s journey as they continue to search for answers for their beloved daughter. As they relentlessly search for help and answers, they have to deal with all of the emotions of watching Schuyler grow and time slip away. I feel that the letter just solidifies the fact that our children are tiny parts of our hearts living outside of our bodies. True unconditional love makes you want to protect, take away their pain and guard them. I still want to hold out hope for Schuyler. Hope for answers, happiness and progress in her quality of life.

  2. Melanie says:

    I think Schuyler’s costume is very symbolic for Robert as it is how he wants Schuyler to be able to fly away from this scary world and flutter into a world where only happiness and freedom are present and she doesn’t have to face her reality of never being able to verbally communicate and the cruelness others may direct her way (intentionally or not) over the years.

    Robert always comments on how he is a broken father and he seems to feel that he fails Schuyler but the fact that all he wants is to fix her brokenness and for her to live a fulfilling life is every father’s dream so he is doing what every great (not broken) father does.

  3. I have been noticing lately that I don’t seem very happy, like my world is just so serious, and what about that?? I so treasure the quick smiles and laughter of our preschoolers. And even looking at my own grown children, I worry about decisions they are making instead of being glad that they are independent and are giving themselves chances to learn and grow more.. So I am thinking that though I am pretty happy, I think I don’t feel as free to be joyful due to different issues and experiences that I’ve lived through. So Robert is quite burdened over the issues with Schuyler, but then he is relishing the joy he feels when he is with Schuyler and meeting her needs to a certain extent. And though he doesn’t feel like a successful father, my goodness I believe he is lifeline for his daughter and she is a lifeline for him.

  4. Rachel says:

    I loved how I was reading the chapter just prior to getting my own two girls dressed in their own Halloween costumes. I felt his fears for Schuyler’s future…that he wasn’t sure when she would master potty training or when her scribbles would turn into letters or words. He also said that he realized that Schuyler knew she was different, but that she wasn’t afraid of it, not like he was. I think that is key as paretns. Often our own fears and anxiety overshadow what our children actually CAN do.

    The letter was gut-wrenching to read. As parents, I think many of us have experienced those nights where our kids are sent to bed mad and crying. And we feel like crap. Guilty over it all. All he wants is the best for his daughter and it kills him on the inside that he can’t give more to her.

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