This was originally published on March 6, 2013 It is an account of the time that I was pregnant with Moxie. Please be aware this post discusses violence, sexual abuse and abortion. You can listen to me read this post by clicking the player below, or on my podcast on Spotify or iTunes. I. The…
[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…
[vc_row][vc_column][vc_column_text]We’ve been traveling around Maui and Lana’i for the past 10 days, and I have noticed something with regard to Moxie. I’ve noticed that while there are a few people who look at her with pity or take a step back, the vast majority of people that we interact with seem to be eager to…
Coming to terms with internalized ableism, as a parent with a disability, having a child with a disability
[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…
[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…
Moxie, the Tea Collection and their amazing sale!
[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!…
I was like a snarling mama cat, clamouring for full inclusion until just recently. That is, for NOT having Moxie in a “special ed” classroom, in a classroom set aside in which all of the other children therein also have a cognitive disability. Moxie learns by imitation, I thought, what sense does it make to…
Moxie wanted the fishing game to work…
The tooth fairy came on by!
Big wheel ‘ing
About fear, accountability and love
The Best School Ever said that it’s okay that Moxie isn’t potty trained, they want her (and more stuff like that that has me looking at my toes because I’m always worried I’ll start crying over their total awesomeness). But even with them saying so, I know it’s a good thing to get her on…
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…
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…
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…
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…
One of the things I love about road travel is how conducive it is to reflection. I’ve been reflecting on moxie. I’m going to be honest here: I’ve wanted to put this post out forever. But I keep feeling like I’m too small fry of a blog, too much of a dork, I’m not cool…
I came upon Moxie the other day as she was sitting by herself. The ‘Big, Little’ book was open on her lap, her legs outstretched. She was signing the pictures, signing “tree” then signing ‘flower”, turning the page (with a flourish and slam) and signing on. I thought my heart was going to bust out…
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…
I really appreciate the outpouring of support that came my way after some of the more vitriolic comments from my post regarding stereotypes and Down syndrome. I am grateful for those of you that have been friends with me – virtually or in person – real and true enough to hang in there and work…
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…
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…
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…
I think my story in and of itself is a plump one. Take your pick, but most of the facets are individually pieces that people will write long about – from the early years on the rural sheep farm to the car accident. My parents becoming Baha’i’s, then moving to the Fiji Islands. Growing up…
I think my story in and of itself is a plump one. Take your pick, but most of the facets are individually pieces that people will write long about – from the early years on the rural sheep farm to the car accident. My parents becoming Baha’i’s, then moving to the Fiji Islands. Growing up…
I think my story in and of itself is a plump one. Take your pick, but most of the facets are individually pieces that people will write long about – from the early years on the rural sheep farm to the car accident. My parents becoming Baha’i’s, then moving to the Fiji Islands. Growing up…
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…
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…
Monica and David: the story of a couple with Down syndrome who get married and begin their life together. It was originally aired a couple of years ago but Netflix just picked it up, which means I’m watching it for the first time. It really had me bawling like a small child through much of…
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…
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…
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…
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…
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…
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…
In my first year teaching, I had native speakers of English right along with kids who did not speak one lick of English – who were beside the kids who spoke a phrase or three. This was in Macau, which was a Portuguese colony at the time, across from Hong Kong (which was a British…
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…
I suck. Moxie's 6 month mark came and went. My little Precious Plum has been with us in this here world for more than half a year. Yay! Better late than never, I thought I'd catch you up on some stats as a sort of celebration: She is almost 14lbs and is over 20…
I don't feel so hot today. And it's because of Little Miss. who, ME? Yes, YOU! Honey, you were chomping on my boobs ALL NIGHT, and you wouldn't quit kicking me! Mommy's nipples feel like they've been doused in kerosene and set alight! And then… remember when I couldn't take it anymore and Daddy went…
I wonder when I'm old and wrinkled (well, even more than I am now, that is) if I'll remember how it feels to need to get the milk out. The burn. The drop. The pain. Or the feeling of pressure that comes about as soon as I hook myself up to the pump? How it…