This is not really a book review, as much as just personal feelings as I read the book. I would never be critical of someone else’s journey. The book Normal is a real life story written by a 14 year old with Treacher Collins Syndrome and his mom with the help of the author of Wonder. The boy Nathaniel and his family’s story was featured in a 20/20 Special that along with the book Wonder helped bring more light to TCS and craniofacial differences. At first I did not want to read it and thought why do I need to hear their story when I have been living a life with a child with TCS for 2 years now. My husband though was begging to get the book and read it. I had a gift card to Barnes and Nobles, and agreed to get the book. It took a few days until I could emotionally get in the right mindset to read the book. Once I started it, I couldn’t put it down and finished it in a few days. There were a few parts that I felt I was reading my own thoughts on the pages and other parts that made me grateful for Little A’s journey. Nathaniel was born a lot more severe than Little A; had trouble breathing from the start and had many, many more surgeries. Nathaniel was not born at NYU, but they were transferred there for the help of the craniofacial team. There were two people they talked about from that team that we also met with at our time in the hospital. NP Pat, is like mission control of the craniofacial team and organizes meetings with the doctors and commands many of the everyday operations. She was the one that after a meeting about Little A’s feeding tube, hugged me and reminded me that as a new mommy I need to take care of myself too and it is ok to take a physical and emotional break away from the NICU for a day. That it doesn’t make you a bad mommy, and in fact is quite the opposite. You can’t take care of someone in need if you are not well yourself. Speech Therapist Shelley, is the other name we read in the book and remember our exact meeting with her too! It was quite similar to the Newman’s meeting. Shelley is another face (no pun intended) of the craniofacial team. After a doctor suspected that Little A had treacher collins, Shelley came to our room to congratulate us on becoming parents, give us a little gift and let us know that we are not alone. It was weird reading the book and knowing the exact people they were talking about and how similar our journeys with TCS started off.
As I write this though, a quote comes to mind that I heard many times as a special education teacher of students with autism--”When you meet someone with autism, you have met 1 person with autism.” Meaning every person is different and has a different journey. There are things you can learn from other people’s stories that may help you through your journey, but it won’t be exactly the same. Reading this book has helped me in some ways, and gives me an enormous amount of confidence that Little A is going to lead a “normal” happy life. The following quote from the mom in the book was like someone read thoughts from my mind and wrote it down on the page. I read it over and over and then went to my husband tear eyed and simply stated “She gets it...she found the words for my feelings.” She stated “When I tell you how difficult it was in the beginning, I want to be clear about something: The biggest reason I was so upset by Nathaniel’s birth was because I had no idea what was coming. How he looked and the hurdles he faced were something I could accept and love, but the shock was gigantic. When life takes a sudden unexpected turn, we are asked to show what we are made of. It took me time to find my balance. That can be true in so many ways in life.” This! I don’t have many words to explain this quote or know if it needs to be explained. I loved Little A at first sight and knew I always would love this little boy, but when he was sent to the NICU and then doctors and nurses were throwing around acronyms and words, shock took over. There were times I allowed myself to be upset that things were not going as planned. Then there comes a time when you just dig deep down, lean on your partner, family and friends and find the strength that you need! We are so happy that Little A is our child and feel like the luckiest parents in the world. Although our start to parenthood wasn’t easy, it has shaped who we are as parents and people in general. It has made us realize that we are made up of a lot of love and strength and can get through anything together.
The next quote that really stood out to me was written by Nathaniel himself. “It is weird for me to write this book, about what I’ve been through, when I don’t want people to think about what I’ve been through. We like to categorize people. That’s how Wonder helped people understand me. ‘Oh, there’s a kid like Auggie.’ But I think all of us have parts of our identity that we’d prefer people to see through. You notice how I look? Fine. You have a question or two about it? Sure, okay. But after that, I’d like us to move on, so we can see if we like to play the same games or talk about the same things.” Whenever I am talking to someone new about Little A and they don’t know what TCS is, the book/movie Wonder is my go to too. It is an easy reference if they have read it or seen it and is usually followed by “the severity of it is a spectrum and Little A is not nearly as severe as Auggie” As a teacher, a parent and human being, this quote really speaks to me because no one should be judged based on how they look. I always worry about how Little A is going to be treated once he is in school. Once you get past his tiny ears/hearing aids, Little A is a smart, funny, kind two year old. He likes to do the same things as any other two year old. I know it is human nature to put people in a box and categorize them, but then we might be missing out on knowing other things about that person that makes them special. I don’t mind telling people that the headband Little A wears holds his hearing aids on, but his BAHAs don’t define him. I didn’t mind explaining about the feeding tube, but that never defined him. Right now Little A is only two and kids don’t care about looks (at least yet). They may touch his hearing aids out of curiosity and we just say those are his ears and not to touch and then off they go together to play. I know in the future Little A will have no problem answering questions about his appearance, and like Nathaniel he will just want to go play a game or talk about other things. As Nathaniel also said in the book “Treacher Collins doesn’t define me. What defines us all is how we face the world we've been given. I’m Nathaniel. I’m not normal, and neither are you.” We have already started to make sure that Little A knows he can do anything, be anyone as long as he is true to himself. He is Little A, an amazing, strong little boy, who is going to do wonderful things in the future!
