What I am reading these days: "The Boy in the Moon", Jake serenading Zoey and a blew me away Zoey moment ...

A friend, an amazing friend really,who had a birthday celebration luncheon today, that I missed due to having no one to care for Miss Z , recommended this book. Not sure why I mentioned the lunch thing except that it does speak to life with a child like Zoey. Sure, we miss things all the time because of logistics with our typicals, but the complexities of our days, and our movement within those days, are so much more complicated when we have a child who is 100% dependant on someone else to take care of their every need. And missing today, mentioning missing today, is a good segue to this book, " The Boy in the Moon": A Father's Journey to Understanding His Extraordinary Son. In this book, Ian Brown, dad to Walker, intimately and honestly allows us a glimpse into what life is like, day to day, year in, year out, taking care of a severely disabled child. Something some of us don't need to actually glimpse, because we LIVE it. Each and everyday. We live it.

I have had to read this book in small doses. Super small doses. Leave it and come back to it. Highlight somethings and reread others. Some of it, painful. Truly to my core painful, to read. I think right off the bat, as he talked about his son Walker who has a rare disorder call  CFC syndrome, I realized, as he talked about Walkers delays, and the quality of his life, the things he is not capable of and the things he is,  and his battle in some moments, to fight feeling sorry for Walker for what he is not and what he will never be, I wondered, what would he think of Zoey? Because, as I read, I realized, Zoey, doesn't come close to being able to do some of the things what Walker does. Not even close. I often think, do people within my special needs community, other parents, look at Zoey with pity? Do they feel sorry for her? For me?

I read on and I cried as Ian talked about his marriage and the evolution of it. The acceptance of certain things, that in another time and in another life, he may not so readily accept. I read some things that I can say that I 1000% disagreed with and other things, that I could have very well written myself. Realizing in some moments, why it is that we can often meet another parent, traveling a parallel path, and connect at such levels, and with such understanding, that one would think we have known each other an entire lifetime. I realized as I read, that as Ian traveled the country,  in a quest to meet other families with children with Walkers syndrome, that I would not even know where to begin in search of the likeness of Zoey. Yes, she has Down syndrome, a community I love with all my heart but within that community, she possesses very few similar qualities as her peers. She has Cerebral Palsy due to her stroke and had Infantile Spasms, that left unknown additional delays, she had leukemia, she has a feeding tube and well, the list goes on. I have attached my heart to each of those communities, with every fiber in me, but in the end, I do lack a profound sense of belonging.

I could go on and on, but instead I will leave you with a few highlighted passages that resonated with me in indescribable ways. Passages that I will certainly return to over the course of my life raising Zoey. In many of the passages I could easily interchange Zoey and Walkers name. Without pause and without hesitation.

From "The Boy in the Moon ":


"Because on his good days, Walker is proof of what the imperfect and the fragile have to offer; a reminder that there are many ways to be human; a concentrator of joy;an insistent nudge to pay attention to every passing mote of daily life that otherwise slips by uncounted."

"The Buddhists say that the way to enlightenment, to pure being, is by getting your mind out of the way. I'm not trying to be trite, but Walker, already knows how to do that. He is pure being. He may be developmentally delayed, or moderately retarded, but in that way, he is already miles ahead of most of us."

" The purpose of intellectually disabled people like Walker might be to free us from the stark emptiness of the survival of the fittest."

'Walker is an experiment in human life lived in the rare atmosphere of the continuous present. Very few can survive there."

"Because until twenty years ago, children this medically complex didn't exist. They didn't survive. Hightech medicine has created a new strain of beings who require superhuman care. Society has yet to acknowledge this reality, especially at a practical level."

"The disabled are a challenge to everyone's established sense of order: they frighten us, if not with their faces then with their obvious need."

"The trick is to give up the idea of the potential child and accept the actual child."

So, as I was writing this, two beautiful things occurred. One being, the simplicity of the moment, as Jake strummed his guitar in the backyard to Zoey. What girl could possibly resist a cute boy playing Bon Jovi and Led Zeppelin? This little girls mommy certainly never could.



Anyway, nearly made me cry and the other thing, actually did make me cry a bit. The other, happened as I sat on the couch with my laptop, as Zoey was playing nearby on the floor. I watched her play with a diaper, unused, just in case you are wondering, and I lifted my head and saw her scooting her way to the kitchen, where she proceeded to open the cupboard where the garbage is, reach up and put that flipping diaper in the garbage.





Crazy and timely and seems like perhaps I should reread some of those quotes already, don't you think?