Moxie is Moving!

Moxie is Moving!

[vc_row][vc_column][vc_message message_box_style=”3d” style=”round” message_box_color=”turquoise”]This is a light, cute video post of Moxie having a conversation about her future.[/vc_message][/vc_column][/vc_row][vc_row][vc_column][vc_column_text]Moxie’s got some plans, and she wants to talk about them. Mack’s also wondering about some of those… as you will see![/vc_column_text][/vc_column][/vc_row][vc_row][vc_column][vc_video link=”https://youtu.be/6YtBK8zanNY” align=”center” title=”Moxie’s Getting Married!”][/vc_column][/vc_row][vc_row][vc_column][vc_column_text]Eze is Moxie’s best friend – You know what I was saying…

That Time When I Underestimated My Daughter with Down Syndrome…Again
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That Time When I Underestimated My Daughter with Down Syndrome…Again

[vc_row][vc_column][vc_column_text]I am not a newbie to the world of disability. I have disabilities myself. I have tons of friends with disabilities. I have worked  in the disability arena. In fact, I was working at UC Berkeley – the home of the disability rights movement – when I had the amniocentesis that told me that my…

Moxie in 1st Grade (2 Schools, 2 IEP’s…)

Moxie in 1st Grade (2 Schools, 2 IEP’s…)

[vc_row][vc_column][vc_column_text]This is an anecdotal piece about Moxie, a 7 year old with Down syndrome in 1st grade, and our journey this past academic year in school changes and IEP’s.[/vc_column_text][vc_empty_space][vc_separator color=”turquoise” style=”shadow” border_width=”6″ el_width=”60″][vc_empty_space][/vc_column][/vc_row][vc_row][vc_column][vc_column_text]7 year old Moxie started school in Blue Lake, California this academic year. It was a huge shift for her, going from the Mattole…

In Your Light: To My Daughter (with Down syndrome) on the Occasion of Her 7th Birthday
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In Your Light: To My Daughter (with Down syndrome) on the Occasion of Her 7th Birthday

[vc_row][vc_column][vc_column_text]My daughter, when I woke up on the morning of your birthday, you were awake already. You had slipped out of your bed and headed straight for the art supplies. After I kissed your sweet cheeks good morning (and gave you a hug), you said that the drawing was for me – “see?! MOMMY” Ah!…

Disciplining My Daughter with Down syndrome
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Disciplining My Daughter with Down syndrome

Somehow, somewhere along the line, I stopped disciplining Moxie the same as I discipline Micah, or rather even, the same as I disciplined Micah when he was Moxie’s age. And I don’t know what happened exactly to change that. I suspect that her  inexhaustible appetite for adventure and mischief  had something to do with it – she…

On This Day

On This Day

at this moment four years ago, I was in labor, on the ball, on my hands and knees, walking, hanging on to the door frame at this moment four years ago, I was still hoping that the amniocentesis would be wrong. She had had diffuse fetal hydrops (- in which all of her skin was…

The Road Less Traveled: The Connection Between Travel & Disability
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The Road Less Traveled: The Connection Between Travel & Disability

This blog now seems to have an audience that is made up of travelers, people with disabilities and parents of kids with special needs/disabilities. This makes sense to me, because, after all, living life in a unique way is something that all three of these groups have in common, right? Travel We travel to experience…

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The Road Less Traveled: The Connection Between Travel & Disability & Living a Life with Moxie

This blog now seems to have an audience that is made up of travelers, people with disabilities and parents of kids with special needs/disabilities. This makes sense to me, because, after all, living life in a unique way is something that all three of these groups have in common, right? Travel We travel to experience…

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…About That Bit On “Learning to Go Slower” Because You Have a Child With Down syndrome…

Before I had Moxie – when I was searching online for something positive about Down syndrome, something that I could sink into with a sigh of relief, “oh, it’s going to be okay”, I came upon reasons why parents were grateful that they have a child with Down syndrome. Learning to slow down was often…

Moxie Hears
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Moxie Hears

Moxie got her ears cleaned and checked this week. That is, the ENT (- which means the Ear, Nose and Throat) guy strapped her down to this thing called a “Papoose” so she looked like this: Only – dare I say? – more adorable. She was comfortable but confused. The ENT was fabulous, really deserves…

I Never Knew I Wanted a Child with Down syndrome Until I Had One
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I Never Knew I Wanted a Child with Down syndrome Until I Had One

What feels like a million years ago, I was on the Baby Center Down syndrome Board. I was immersing myself in the questions, the comments, the endless threads. The talk, the chatter, the crying, the heartache. The “brag”s. One signature struck me in particular, “I never knew I wanted a child with Down syndrome until…

A Spirit, Unsilenced #justiceforethan
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A Spirit, Unsilenced #justiceforethan

I feel the spirit of Ethan so strongly. I don’t like talking about it because it seems ripe for a trip to FruitLoop Land,  but you know what? I do. I feel his spirit. I look at my daughter, Moxie Capricious, delightful, strong willed. Smart. Beautiful. Funny. With such a devoted, loving relationship with her…

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No Cost Options for Getting Your Child (with a Disability) an iPad

We all know apps can be great with kids… but what if your budget doesn’t allow for the purchase of an ipad itself? Here are some no cost options for getting your child (especially, your child with a disability) an ipad. *** Local Resources: Never underestimate the power of local. We ourselves received Moxie’s ipad…

A Free iPad (for your child with a disability)
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A Free iPad (for your child with a disability)

We all know apps can be great with kids… but what if your budget doesn’t allow for the purchase of an ipad itself? Here are some no cost options for getting your child (especially, your child with a disability) an ipad. *** Local Resources: Never underestimate the power of local. We ourselves received Moxie’s ipad…

Choosing Moxie
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Choosing Moxie

[vc_row][vc_column][vc_column_text]  I. The beginning of my pregnancy with Moxie feels jumbled, as I recollect it now, some 3 years later. It’s a blur of happenings, events moving swiftly upon each other like quick waves that peak in a tsunami. The blur may be due to the events themselves or may be to the way my mind works – I…

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Soul Juice

The original title of this post was “If You Don’t Get Depressed, Don’t Read This Post” because I was depressed when I first wrote it and felt like it should be from me – who suffers from depression – to you, who know what it’s about (because you know, you wouldn’t be reading it if…

… the Post in Which I am a Defenseless Turtle at the IEP/Transition Meeting
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… the Post in Which I am a Defenseless Turtle at the IEP/Transition Meeting

So I’m sitting here with a sleeping Mac in my lap. I’m crying over him, big fat tears plopping all over his legs. I’m trying to figure out why exactly I’m so upset. The administrator’s parting comment over Micah reading Rumpelstiltskin (the book he brought along to read on his own during the meeting) rings…

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The Raw Feeling of Truth, A Guest Post and Slice of Life

I’m feeling pretty vulnerable today. I am guest posting on Amy Julia Becker’s blog, Thin Places. She is running a series by women regarding their choices in prenatal testing – my contribution is I Regretted My Amnio. The post was an honest one and as such, I feel exposed and kind of raw – like…

Telling a 4 Year Old That His Sister Has Down Syndrome

The other day, Micah was thinking about Mac and what would be going on when he would be three years old. “Well, when Mac is three years old, he’ll be starting to talk, just like Moxie,” he said with a confident nod, his little voice full of assurance. I stopped for a moment, wondering if…

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The Influence of Disability Within My World

Although I’ve had a disability since I was 4 years old (that we know of anyway), I was mainstreamed at all times. In my family, “disability” was something reserved for people who used wheelchairs. The answer to any disability-related issue I may have had growing up was invariably: try a little harder God only gives…

be not scared

I was feeding Moxie the other day, glanced out the window, saw a troup of special-needs kids walk by and lost it. I mean, I lost it. Put down Moxie’s food, head in my hands and bawled. The big, gulping kind of bawl. The damn-I’m-losing-it kind of bawl. Concerned, Micah came around, “why are you…