Friday, September 9, 2011

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?


Just Another Ordinary Miracle said...

My kindred spirit as always.
Parallel worlds. Seems we are in need of each other right now. I'm going to post this to Ivey's blog because you said what I've been thinking for days.

Becca said...

Oh, Heather, that little girl warms my heart in the most amazing way. I think she's got an awful lot of tricks up her sleeve, waiting to share them when *she's* good and ready.

That book sounds absolutely amazing...and can I just say, Holy Cow, I have a neighbor that I just met recently who has a little girl with CFC! She said it was extremely rare, and she feels pretty isolated. I gave her my contact info, but haven't heard from her and haven't seen her again. I'll definitely tell her about that when I see her next. Thanks for sharing that.

colleen said...

You are such a wonderful mother. Everything about this post is incredibly beautiful. I hope the moments of beauty outnumber the moments of struggle for both of you.

Rochelle said...

Oh my Jake serenading Zoey melts my heart. Way to go Zoey she knows where diapers belong. LOL

Karol said...

I can so connect with what you've written here. I can look at Miss Zoey and know that she has more challenges than the typical DS child. Definitely more challenges than my sweet Laynee faced. Still, I get what you are saying. I too could never know how to begin to find another child like my Moise. He has CP, but he's strong as an ox, which is not always a good thing. He is deaf, but here's with his implant and is completely nonverbal. He has seizures but they are not typical. He's mentally impaired and no one will bother to give him the autism diagnosis even though I know it's there. There simply is not another like Moise. We stump them all, doctors, therapists, schools. He's just Moise. He's kinda like Madonna, so unique, he doesn't even need a last name he's the famous MOISE.

And I love the diaper story. A wonderful Zoey moment.

Cammie Heflin said...

Of this entire post the one that brought me to tears is the whole throwing the diaper away! Isn't it amazing how something that seems so ordinary is so extraordinary for others!!! I miss you my friend! Give your family hugs, I smile looking at Joe's pic on your header, what a joy he is and Jake?? Wow, what a talented precious boy! I absolutely adore your older girls, LOVE them! Wish I could have met Taylor, I know I adore her too! Enjoy the beauty around you, what blessings you have :)

Reagan Leigh said...

Pity?? Pity is hardly the word I would use to describe what I feel when I see Miss Zoey!! Amazing, resilient, awe inspiring!! Zoey is a miracle child! She has been through the ringer yet she continues to defy all odds. If Reagan could do 1/10 of what Zoey can do...we'd be thrilled!! In my eyes Zoey is a little genius and just as precious as precious can be!!!

The Annessa Family said...

The one quote about accepting the actual child is so true. Your life will never be the same. As you've added one thing on top of the other in the list of Zoey's diagnosis I can imagine it feels like the growing list leaves you with fewer and fewer people to feel you can connect to.

Nope, your life will never be what it was. But who's life ever is? With each new moment, new experience, new life that enteres...we are forever changed whether we recognize it or not.

Working in the field I do I have seen it all. Ventilators, CP, Shaken baby's, Q1 Deletion syndrome, cordelia marie syndrome, down syndrome, autism...

But no mater what the black and white on the chart tells me...

The diagnosis has always paled in comparison to the amazingly unique individual waiting to open my mind and heart to what they have in store for me.

Love and prayers to you friend.


Bethany said...

What beautiful fragments you chose to share from the book. Miss Zoey is anything but to be pitied. She is a miracle, a radiant overcomer, a child who will not just find her place in this world but change the world along the way. What love for her brother to kneel down and play his guitar for her. And best of all, I love love LOVE the fact that she knows where her diapers go and was motivated to get there to throw it away!!! She is constantly learning and I think will be bringing tears of joy to your eyes for a lifetime.

Elizabeth said...

O.K. I'm weeping, openly, at that photo and your description of your boy and Zoey. So, so beautiful.

And you know how I feel about the book. I highlighted some of the same passages. Remarkable story, remarkable man -- brilliant in every way and provocative.

Kiley said...

I have read most of "The Boy in the Moon" also, but have not been able to finish, You are right, you can only read little bits at a time.

The pic of your son playing to Zoey is so adorable!!

Laura Gilmour said...

I think from watching her videos, that Zoey understands a lot, but her physical limitations prevent her from doing a lot of age-appropriate activities. For example, when Zoe attempted to feed her doll in the video, the dall ended up facedown, despite her attempts to right it. She understood the concept of playing with and feeding a doll, but her hands wouldn't cooperate. It will be amazing to see what she does with assistive technology.

stephanie said...

This... I don't even have words just a steady stream of tears.

"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."

tell Jake I just love him!

And H, I can honestly say i have never EVER in all the time I have known you and Miss Z, never felt bad. Even all through the leukemia, the feeding issues, etc.. I never felt sadness or pity. YOU make it impossible to feel that.

admiration, love , pride, joy, and is there a word for just being left shaking your head and smiling?? Cause that's how I leave your blog most of the time. :))))

oh and two points for the garbage toss!!!

Anonymous said...

Ah, the ever sweet, gentle big brother Jake - Be assured, Jake will always be there to strum soft music to his baby sister Zoey. Of this I am sure - that photo is the essence of Jake - sweetness & kindness

Aunt Bluebelle

blogzilly said...

I think I am almost afraid to read the book. Afraid of truths in it I am not really ready to face. So many of them I am not ready to face.

I keep believing I am, but am I? I just don't know.

Every time I THINK I have accepted the child that Bennett is, and stated as much, I then realize I may not have actually done so. Then guilt comes along, kicks me in the stomach and scurries back under the sofa where I can't reach it.

Anna said...

Many moths ago I read about this book and found it on Amazon. I read pages there too. I dont know why I never bought it? I have been writing little tidbits of similar feelings over the year. Our little one doesnt fit either. Not in the DS world or the adoption world. I feel a deep grief that our DS community fell apart and the loneliness I have. Im sad you missed the birthday party. My friend, if it was mine you wouldve HAD to bring her with you.
And the diaper thing...... she is just so smart!

Anonymous said...

When I see pictures of Zoey, the first thing that comes to my mind is....beautiful.

Jenefer in San Jose

Julie said...

I have this book on my book shelf and agree 100% with your review of it. Some parts were so familiar, I could have written them myself (like the dried patches of formula in the carpet from forgetting to clamp the pump!). I can relate to the isolation of having a child with special needs that is not "typical" (whatever that is). We often feel like there is the planet of healthy children, the planet of those with special needs and then our planet which is not overly populated. It is a tough place to be. I received your email regarding my essay: "What I Would Tell You" and I will email you a private message tonight. I love your blog/website. Will keep reading.

Melissa said...

I am off to find this book!

And pity is never something that has ever come into my mind regarding Zoey. Jealously usually. She is so beautiful, and just warms my heart that I am jealous of all the time you spend with her, while I've never had the chance to meet her.

Victoria Strong said...

Oh sweet, beautiful Zoey! So proud of you!!!