Tag Archive for: special needs

My word of the day.


But it didn’t start out that way.  I awoke in the darkness for the fourth day in a row cursing Daylight Savings Time and the way it thrusts me back into a cycle of waking before the sun just when my mood has begun to lift.  I awoke to another day of Bubba in a different state altogether, missing his solid presence next to mine in bed and calculating the hours until the airplane’s wheels touch down in this city with him inside.

And then I got to kiss my girls awake.  Both of them, teenage-years-be-damned.  I got to lean over Lola’s warm, round cheeks that won’t lose their plumpness for another year perhaps and brush my lips across them, murmuring to her that it is time to get up.  I headed upstairs to stumble over books and underwear strewn across Eve’s floor, making my way to a precarious perch on the side of her bed and press my lips firmly on her forehead, oily with hormones and sleep.  I am so blessed.

We all did what we do, packing lunches, gathering homework and water bottles, steaming milk, walking the dog around the block, sliding in to the car for the short ride to school.

As soon as the girls shut the car doors, I flipped on NPR (they can’t stand to listen to it in the morning whereas I consider it breakfast) and heard that a Senate committee has approved an assault weapons ban that will now head to a full vote.  I listened to a story about the rape case in Ohio and another about the scores of individuals perhaps wrongly convicted because of tainted or fabricated evidence in a Massachusetts lab.  And I wondered…

What if we are all doing the things we are supposed to be doing right now?
What if humanity is pushing along at precisely the pace it needs to be?

I don’t mean to say that there isn’t injustice or incredible suffering in the world for so many people.
I don’t mean to imply that I don’t care about all of it.

But when I look around I see so much beauty and love. I truly feel an emergence of a better place, better working conditions for so many, more equality for individuals who have historically been disenfranchised, more awareness of our collective connection to each other.  And we couldn’t have that without all that has gone before.  We can only work at a certain pace to effect change and I believe that there is a building of energy and will like a tide coming in to sweep the beach. And just like a tide, it will retreat and build again and again.

I see people all over working to make their own lives better and to improve the lives of others and I am buoyed.  It is only by accepting the place where we find ourselves that we can hope to move forward.  Alicia wrote on her blog about some of the real challenges she faces in her everyday life with a special needs daughter, and she wrote about it with equanimity.  She wasn’t railing against her daughter or whatever “god” or “fate” set her up to have the unique behaviors she has, she was simply accepting, sitting back and looking at her own life with clear eyes.  I know so many other parents who do that every day – ElizabethCarrieMichelle.  They absolutely have to marshal their strength to fight for things from time to time. They are all amazing advocates for their children and tremendously committed to finding resources and pushing for change and I am in awe of them all.  But they can’t be effective unless they first understand who they are fighting for. And that takes equanimity.  The ability to look at your life for what it is and find the beauty mixed in with the difficulty. The ability to seek the eye of the tornado and sit there while all swirls around you, knowing that it simply can’t be any different than it is right now, but it will most certainly be different over time.

Today I am finding solace and peace in knowing that the world is what it is right now because that’s where it is supposed to be.  Progress comes on the heels of many feet marching together for the long haul, but we can’t walk if we don’t recognize the ground we’re standing on.


When it first came out, I wrote about my friend Carrie’s book “Wil of God.”  I have since had the distinct pleasure of devouring this lovely, luminous story of Carrie’s parenting journey and wanted to follow up with her in more depth about writing and her life as Wil’s mom.

The official description of the book on Amazon reads:

“Structured around the Four Noble Truths, WIL OF GOD takes you on the spiritual journey of a mother who has one idea for her life, and is handed the exact opposite. Wil comes into the world crying and doesn’t stop for eighteen months, forcing her to abandon her plans for the perfect life. She must embrace the one she is handed: The mother of a boy with relentless needs, and his perfect, endless ability to love.”

 Here goes:

When and why
did you start writing? 
I started playing
around with writing, sort of pre-blog stuff, eight years ago. I took my first
memoir writing class seven years ago, and started my blog at that time.
Why publish
I felt compelled to
write this story and share it. While writing it, my prayer was always that it
would fall into the hands of those that needed to read it – for whatever
reasons. I assumed it would fall into the hands of special needs moms, mostly,
but you know what they say about assuming!
That being said,
there are probably 1000 pages “on the cutting room floor.” A lot of what I
wrote I just needed to write, but
didn’t need to publish.
 Does Wil know
what the book is about? How does he feel?
Wil knows all about
the book and is proud of it. He calls it “our” book. He asked his Grandma
recently, “Did you read our book?” He’s helped me deliver it places and in a
few cases, people have wanted him to sign it for them. That tickles him. By the
same token, he’s pretty nonplussed by the whole thing. One day my friend said,
“Your mom is writing a book about you, Wil, and it’s going to be published
soon!” His response was, “Well, I’ve got news, too! Wednesday is a Thursday
schedule, and Thursday is a Wednesday schedule!”
What was the
hardest part of writing this book? Any major revelations in the process?
The hardest part of
writing it was making myself write it. I fought with myself throughout. I was
full of doubt but knew I had to persist. Some parts of it wrote themselves,
other parts I just had to force myself through. It was brutal going through old
journals to get the facts, especially those early years. It triggered many a
PTSD episode!
What triggers
or reminds you to tap into your intuition?
Oh, good question!
Sometimes I literally am just gifted with a downloaded “piece” or “scene.” I
know I have to go to the keyboard immediately and just let it out. I LOVE when
that happens, and those places in the book remain my favorite. They never were
edited, they remain first draft. I guess to answer your question, history
reminds me to tap into my intuition, I’ve always been rewarded by doing so.
Has the
acknowledgment of Wil’s gifts prompted you to see other people differently? Did
it allow you to see your daughter’s gifts more clearly? Did it change your
perspective on the talented and gifted kids you used to teach?
Absolutely! I see
everyone and every thing differently! I am so grateful I’m not as judgmental as
I used to be, and much more patient. It has allowed me to see my daughter’s
gifts more clearly, and now that she’s in college and almost nineteen, I see
her gifts not just as a girl, but as the woman she’s becoming. I see her wisdom
and depth that she may have always had, but which has certainly grown as a
result of being Wil’s sister.
At first I thought
it terribly ironic that I ever taught Talented and Gifted. Now, I see that it
was great training ground for advocating for kids that are beyond the norm –
whatever that is. Having taught TAG and now all my years in special ed, I’ve
thrown out definitions and uses for “intelligence.” We all have gifts, we all
have talents. Period.
What’s next
for you?

No idea! I can’t
wait to find out, though, and am surprised and pleased that I’m feeling okay
about not knowing, and excited to see! I am letting it be “organic.” I don’t
want to push anything nor force anything, but am open to all the signs and
nudges from beyond!
and now some
fun questions from James Lipton’s “Inside the Actor’s Studio:”
What is your
favorite word?
What is your
least favorite word?
The R-word.
What is your
favorite sound?
The sound of
What is your
least favorite sound?
god-awful throaty, guttural, humming sound Wil makes when he’s un-medicated.

Thanks so much, Carrie!  

“Wil of God” is available on Amazon in paperback and electronic versions. Click through to get your copy today!