I read it months ago. But, as my life is, I never had the time to write about it. Well, Murphy and I started reading it about a week or so ago. Which is kinda weird because we started it about a week before he came home and said he was supposed to read a chapter book (that wasn't a Diary of a Wimpy Kid book) for school. Awesome timing!
Anyway, here's the gist of the book in brief:
It's about a 10-year old boy named August. He has a craniofacial syndrome that has him looking pretty horrific. In fact, he says, "I won't describe what I look like. Whatever you're thinking, it's probably worse." Because of his medical challenges, he's been home schooled his whole life. In the book, he goes to school for the first time and enters the 5th grade. He has a wonderful mom and dad and an older sister, named Olivia (or Via, for short). The book is written from August's point of view for the first part. Then his sister's point of view, then his friend's, etc. It's pretty awesome.
The background of the book is that the author was at an ice cream place years and years ago, with her two boys who were young at the time. A little girl with a craniofacial syndrome and her mother came in, and the author, trying to prevent any embarrassing remarks from her boys, high tailed it out of there. In her defense, she really was trying to be sensitive. Unfortunately, the little girl and her mom, knew very well what the author was doing and as the author walked away she heard the girl's mom say to the girl, "I think it's time to go home now." Apparently, that moment really affected her. She was not proud of the way she handled the situation. And she was filled with regret. Years later - she wrote this book.
One interesting note - I read an interview with the author and she was asked how come she never wrote from the mom and dad's point of view. Her response was that their perspective would be too heavy for the book. Amen. I know that to be true.
I have to say that I am SUPER impressed that someone who doesn't have a child with special needs could be in touch with so many emotions that we (a family with such a child) feel. I really could talk forever about this book and how I feel about it. But, I won't. You're welcome.
However, Murphy and I were reading it Tuesday night, and while I was reading this chapter, it took everything in me to stay strong and not burst out into tears. I just have to share it with you...
This is Via's (August's big sister) first time speaking in the book.
A Tour of the Galaxy
August is the Sun. Me and Mom and Dad are planets orbiting the Sun. The rest of our family and friends are asteroids and comets floating around the planets orbiting the Sun. The only celestial body that doesn't orbit August the Sun is Daisy the dog, and that's only because to her little doggy eyes, August's face doesn't look very different from any other human's face. To Daisy, all our faces look alike, as flat and pale as the moon.
I'm used to the way this universe works. I've never minded it because it's all I've ever known. I've always understood that August is special and has special needs. If I was playing too loudly and he was trying to take a nap, I knew I would have to play something else because he needed his rest after some procedure or other had left him weak and in pain. If I wanted Mom and Dad to watch me play soccer, I knew that nine out of ten times they'd miss it because they were busy shuttling August to speech therapy or physical therapy or a new specialist or a surgery.
Mom and Dad would always say I was the most understanding little girl in the world. I don't know about that, just that I understood there was no point in complaining. I've seen August after his surgeries: his little face bandaged up and swollen, his tiny body full of IVs and tubes to keep him alive. After you've seen someone else going through that, it feels kind of crazy to complain over not getting the toy you asked for, or your mom missing a school play. I knew this even when I was six years old. No one ever told it to me. I just knew it.
So I've gotten used to not complaining, and I've gotten used to not bothering Mom and Dad with little stuff. I've gotten used to figuring things out on my own: how to put toys together, how to organize my life so I don't miss friends' birthday parties, how to stay on top of my schoolwork so I never fall behind in class. I've never asked for help with my homework. Never needed reminding to finish a project or study for a test. If I was having trouble with a subject in school, I'd go home and study it until I figured it out on my own. I taught myself how to convert fractions into decimal points by going online. I've done every school project pretty much by myself. When Mom or Dad ask me how things are going in school, I've always said "good" - even when it hasn't always been so good. My worst day, worst fall, worst headache, worst bruise, worst cramp, worst mean thing anyone could say has always been nothing compared to what August has gone through. This isn't me being noble, by the way: it's just the way I know it is.
And this is the way it's always been for me, for the little universe of us. But this year there seems to be a shift in the cosmos. The galaxy is changing. Planets are falling out of alignment.
So, after I finished the chapter, I paused. I asked Murphy if he understood where Via was coming from. Of course he agreed. And then he said, "Like you missed my concert because you had to go to school with Harlie."
Yes. Yes, that just happened like two weeks ago. He went on to tell me, "But Daddy waved at me between every song. And he videotaped it so you could see it, too." Break. My. Heart.
Murphy asks for help with his homework. And he definitely needs help with projects and stuff. But, I will say, that he doesn't complain. He never has. He has never once said anything about the amount of attention that Harlie gets vs. the amount that he gets. Not once.
There are SO many challenges when you have a child not just with special needs - but who's medically fragile, as well. There are so many, it's hard to ever try to describe it to someone who doesn't live the life. Not one family member is spared from heart ache. For yourself. For Harlie. It's just so freaking complicated.
I'm so thankful to have this book to open up a bunch of really important conversations between me and Murphy. Honestly, I think this is a fantastic book - even if all of your children are healthy and beautiful (you lucky dogs). It teaches kids about kindness and the importance of talking to parents about stuff that goes on at school. I will say that last night Murphy didn't want to read it. He said it was getting kinda sad. Which it certainly does - and I would assume even more so for us, since we kinda feel like we're reading about our life, sort of. But, I told him what he's sad about in the book right now, gets better. I think the book was written for kids, too, so it doesn't stay sad for long. So, we'll pick it up again tonight. Anyway, I highly recommend it.
On the Harlie front, she's freaking sick again. I had turn on the oxygen while she was sleeping. So, she hasn't been to school since Monday. We had her IEP meeting yesterday. And she has her follow-up appointment from her BAHA surgery this morning.