Holding Onto Light

Today has been a day filled with news of death in the special needs community. Some of it just a horrible misfortune in medical malfunctions, and some of it more sinister. It's hard to not find myself in tears over these things. The whole community is in mourning I think. When my community mourns, I mourn as well. It's too easy to think of how this could be us.

I had a post planned today. A sweet bit of fluff post. As I read these things, I felt like I couldn't write that post now. My heart was so heavy. But then as I played with Jude, and took a gazillion more pictures of her, I felt that maybe I needed to put that bit of fluff up. Because really what the post was about was about how Jude is here, loved, and typical...typical beastie that is.

And being a typical beastie is NOT like being a typical kid. After all the beasties are quirky and eccentric perhaps. Some of them have seizures and have to take meds every night along with monthly blood draws and yearly EEGs.

In our house, social miscues are pretty routine. Insomnia is a plaguing feature of our nights. And we all learn from the periodic fascinations that overcome a certain beastie girl. We also have to figure in ritual time before meals and leaving, meltdowns at the park, and a certain bluntness that crosses that fine polite line.

Some of us are anxious (mama's been kind of a freak about the whole dry drowning thing) to the point of panic attacks (thankfully few and far between)...an anxiety that too often paralyzes talent and skill.

There are toddlers amongst us who scream and cry a great deal. Who don't transition well....we're not sure where's that headed but we take it in stride.

Just for the record I didn't purposefully capture her screaming...this started off as a happy moment.

And then we have Jude who has that little bit of extra. It's all good.

Because really the beasties are just who they are: awesome, funny, smart, beautiful. This family. Being us. In our home, they are not Other. I wish sometimes I could build up a big wall to keep them safely enclosed within our walls. But that's not how things work. These beasties are growing out...spreading their tender roots along the ground. 

H and I don't shield them despite what others may think about our homeschooling. We talk to them openly about violence, racism, sexism, ablism. We tell them why we cry. We have conversations about things like Newtown, the way that Twitter handlers talk about girl gamers, and why people hate immigrants. Our children learn about this ugliness though from us not because some asshole called them a Spic or a retard. And I've watched as these beasties have grown into self assured kids who stand up for things. Who are not afraid to call people out on hate language or say "Whoa dude that's racist."

A couple of months ago, Camille had a dentist appointment. She was pretty traumatized and even started to cry in the exam room. Her visit months earlier had been rough and she associated the dentist with pain (who doesn't right?). As we waited for Umberto, Camille engaged in some behavior that was self soothing but not totally socially appropriate. She wasn't bothering anyone so I let her alone but I did notice two little girls, the kind who look oh so normal and oh so mean whispering about her. My impulse was to stop her but Camille didn't give a shit. She gave the girls one of her withering looks, and they kind of slunk down in their seats. 

I worry about my children who are not Other. Who have not grown up to think of themselves as Other. Will the world break them down? I like to think they will remain these towers of light that pierce the darkness of ignorance, hate, and fear. Until I have to set them free, I will hold onto them, fighting hard to make this a world worthy of them and others like them. Holding onto light is hard: it burns, it makes you raw, it opens you up to pain. But it also shines out through you, and if you let it it forges you into something lovely.

Nuns, Buses, and Introduction to Protesting 101

H and I often talk about how important it is to introduce the beasties to protesting. As the beasties will gladly tell you we often try to engage them (bore them to tears I'm sure) on questions of social justice and the importance of making your voice heard. But we haven't given them as many as opportunities as I would like to have their bodies on the ground so to speak. As a big believer in educational action, this seemed a big gap in what we were doing. I had many excuses...after all it's hard to get five beasties out the door anywhere much less to an organized protest.

So when I woke up late Wednesday morning, after a rather hideous night of putting together an Ikea bed (beer was involved but did not help), I was not in any mood to drive to Atlanta to stand around in the hot Southern sun. But as I sipped my coffee, I started to feel like this really needed to be done. H and I forced beasties out of bed, took hurried showers, and made up some signs.

Piper was super excited to make her own sign.

We had a rough start...lots of stopping to get food, coffee, you know the necessities of life. Gone are the days when going to a protest really only involved rolling out of bed, grabbing a coffee, and heading out. Protesting with kids involved a level of organization that I was only used to when being, well the organizer.

But we got there. We parked the car, and saw a small group of people walking towards a main through away. Later Horacio and I and both confessed that we were really bummed that there were only a handful of people. We got the kids out, got our signs, put little beasties in the stroller, and strapped on the diaper bag. It was hot, and as we rushed to catch up with the group, sweat was already pooling down my back. I was waiting for the kids to complain but surprisingly they didn't.

We found out the group was actually a splinter off group going out to meet the nuns with their signs. Security had, apparently, told them they had to put their signs away. The senator the nuns were meeting conveniently had his office in a private building thus disabling protests at his office.

I was kind of eh about this side trip, aware that we had a finite amount of time with the kids but the girls were super excited to get to greet the bus. We all waved and yelled and waved our signs including Piper and Camille. We even got Umberto to hold a sign. 

The woman in white below was awesome. She's from Move On in Atlanta and her passion is seriously contagious. She was thrilled to have the kids at the protest, and excited that we hope to do more activism in the area. She knew about immigration and cared deeply that justice happens for those caught in the system. It's inspiring to be around people who care and know...it fuels your own flame no matter how tiny it might start.

We turned around and began the walk back to the office. The kids went willingly, I suspect taking pleasure in the attention lavished on them. They held up their signs at all the cars passing, pleased when someone honked and waved. Umberto was a little grumpier but didn't complain. When we got to the office site, we were getting the kids under the porch where it was shaded. As soon as I had Jude out of the stroller, a security guard came over and told us we had to leave. He was the nice one. He was shooing us all off, having a fit if anyone held up signs but he was least polite.

But then another security guard came out and he wasn't so nice. He threatened to arrest us, and was verbally abusive, yelling at older ladies...getting into people's faces. Umberto was thrilled to hold up his sign in his first act of civil disobedience. I suspect this was by far the most thrilling aspect for him. As we started yet another long walk to a new location, I talked to Umberto about Thoreau and his concept of Civil Disobedience, and introduced to others like Gandhi who used this method to protest oppression. Breaking the law is fun and games to a teen age boy but I wanted him to understand the harsh consequences often visited upon people who stand up to oppression.

As we crossed the major through way to a shopping mall parking lot, Camille held up her sign proudly to the cars stopped at the lights. I felt the tears coming and I know, I know, kind of silly but this is my moment of pride. My kids, protesting for something we as a family believe in, proud, defiant. These are the kind of people I want to raise. Coming to the protest was all about this..showing them that they are part of a community, introducing them to the excitement of standing with others and doing the right thing. 

The girls drew a lot of attention, and they handled themselves well. Piper who is so self conscious talked to reporters, held her sign up for both still and news cameras. She even went up front by the bus with her sign for an official picture (and got fussed over by some sisters). Camille did not want to be on camera but she held up her sign, videoed taped the gathering, and was interested in what was going on around her. Jude was a big hit as the youngest supporter in presence. She got a sticker and a picture taken of course. 

H and I did an interview with someone (not sure if they were news or if they were documenting for the Nuns on the Bus). H was brilliant, and mentioned Freedom University a number of times. He talked about the social construction of being undocumented, etc. I was more flumbly as I am with the camera but I did manage to talk a bit about why we had brought the children and about how even legal routes to citizenship were problematic in terms of money and personal humiliation. 

And of course I was super excited to meet the Nuns on the Bus...it was an honor to stand behind them (I'm behind the guy with the big Reunite Families sign). And I got to hear Sister Simone (I admit I'm a fan girl and was bummed I didn't get a photo with her). The kids held up well but it was hot so we had to leave...R kept crying that she wanted to go to "Tlanta" aka downtown area. We missed the SIX police cars sent out after the event was over....

The night before we left for the protest, we talked to the kids about why we were going to the march. We wanted them to understand that this wasn't just about other people but about them. They are Latino/a and they will have to face people who don't see them as belonging here (despite the fact that they are all American citizens). We wanted them to realize that thread that connects them to undocumented immigrants as well as to the greater human community. My children live in a state that has legalized racial profiling. My children are American citizens but because of their skin color, they have to prove it. I don't have to prove it.My white readers don't have to prove it either. Instead we are assumed belonging because of our whiteness. At the event, we saw people of all races, uniting in that human community, calling for justice, for the recognition that humanity does not have borders.

Piper Goes To School

Piper went to school last year. No Not a normal school for our quirky beastie. No we found a little unschool, Freedom to Grow, where she would go two days a week. Piper is our out there kid. She always wants to be doing things, playing, going places. We hoped school would provide an outlet.

First day of school

There was so much to do, and the school welcomed our family to get involved as well. There were animals, field trips, and special days. Piper saw plays and choral groups. She went to the rec center for PE. She roamed the woods and the beach. There was plenty do for an energetic girl.

Meeting some seriously large tortoises. 

As Piper has gotten older, I've started to notice that much of her exuberance has begun to be dampened under extreme self-consciousness. Fear was staring to take over Piper's spirit. She didn't dance as much or sing aloud. She was constantly telling us that her drawings were awful. It was like someone was turning a dimmer down on her vibrant self.

When the school went horseback riding at a school mate's stable, Piper was initially excited. However as our line crept closer toward the pony, she started to tell me she didn't want to ride the pony.She said she was scared but I noticed her casting glances at the other kids. She was scared to ride in front of them. I talked to her but she wouldn't budge. I sadly helped her take her helmet off and we leaned against the fence. One of the teacher's noticed Piper hanging by the fence and approached her. With a lot of gentleness, she got Piper on the pony. I cheered out loud because Piper was making a step towards the vibrancy I expected from her.

And I've watched Piper blossom this year in terms of her friendships. It has not always been easy for her, and there were many struggles with other girls. I'll admit my kids are a little sheltered when it comes to girl drama, and I did worry about this when I sent Piper to school. She had struggled with this at park days and I was worried about the day in and out. And yes there were struggles as Piper dealt with different personalities, spats between friends, and the pain of rejection. These lessons are painful to experience, and hard for me to watch. They bring back so much of my own pain at being the weird child left out. At FTGU, Piper wasn't the weird child though, and by the end of the year she had made good friends. She had also learn to negotiate reaching out to others, and making friends with people she might not have originally imagined as being friends.

And I think these friendships have helped Piper in her relationships at home. Having friends who help her, and encourage her has given us a pathway to talk with her about patience and understanding with R. Her new love affair with Jude, a beautiful and awesome love, that made her vulnerable also I think benefited from school. I think this vulnerability gave her strength because after expressing to us her fears, and after our encouragement to love without restraint Piper did start to reach out more. 

Academically, Piper exploded. She went from being pretty much a non reader to reading chapter books and manga. Now Piper's nose is always buried in a book. She begs to go the library as she whips through series after series. 

And it's not just fiction she's reading but non fiction. Piper studied bats in the fall, and I knew more about that species than I ever wanted to know. I was lucky enough to be in on that study at her school, and it was delightful to watch how excited Piper was to learn new things. Piper saw the beauty and joy in bats which is something I never thought possible but I sat here growing as excited at she as what we were learning. She took her information and created her own book.

And with the reading came a love of writing. Piper learned to journal at school and she loves it (how can I, her mama blogger not be proud of this new love?). I find journals she's stabled together and filled out all over the house. The one below was quite moving, a love letter to Jude which is part of a whole journal she's created to give to Jude once she's older.

And this creative building in writing and reading is something I really see fostered at FTGU. Piper always liked to craft but she really wanted me to facilitate it. I'm not a crafty person and it's hard for me to make my big plans into reality. I'd encourage Piper to just do it but she'd drag her feet and end up doing nothing. At FTGU, she learned to be more independent. Now at home, she's always putting things together...crafting collages, boxes, whatever she can get her hands on. Her handmade journals are works of art.

Bird Toy 

Bat Cat by Piper Fall of 2012

Tree Fur by Piper May 2013

Twice in the school year, Piper gave us a presentation of the work she's done over the course of the semester. I loved watching her giggle her way through the presentations but she still did it. She broke through her embarrassment to show us all she had learned. And it was always amazing to me how much she had crammed into a year. Nothing too formal but just the wonderful learning that comes from joy, interest and excitement.

In addition, I was really thrilled with Lora's end of the year report for Piper. I felt she understood Piper and she was seeing both the things that gave us such joy with Piper and the things that concerned us. It's nice to see that a teacher and a guide really gets who your kid is and where they might want to journey next.




This year has been an incredible year of Piper. It's been a mixed bag of course...it wouldn't be a good life if things were too smooth. Over this year, I've watched Piper spread her roots across the ground. Not up or down but instead across the horizon. We named our little home school Mille Plateaux years ago in honor of Deleuze because we adored his idea of rhizomes. "A rhizome has no beginning or end; it is always in the middle, between things, interbeing, intermezzo. The tree is filiation, but the rhizome is alliance, uniquely alliance. The tree imposes the verb "to be," but the fabric of the rhizome is the conjunction, "and..and..and" This conjunction carries enough force to shake and uproot the verb "to be." Thousand Plateaus 24. What has happened for Piper in this little school that is by the train tracks is that she has contiuned into the myriad forms of becoming. Her school and Lora did not try to push her into mold. She was not fitted with wood stakes to force her into a linear growth. Instead she was allowed to spread out to become an and...and another and. Her life has not grown away from us to sweep the sky while we sit about her roots, instead she has expanded into ground, into new areas while remaining near us as well. To find a school that encourages that "and" is a rare gift.

I encourage those who can to consider donating to the school's scholarship fund. This fund directly impacts Piper but also will help other families realize the freedom to learn in a way that opens up the "and" in a child's life. Lora wants to make sure this vision can be realized by parents who might not be able to afford the full tuition. Click here to learn more.

What Science Could Not Tell Me

chro·mo·some

 noun \ˈkrō-mə-ˌsōm, -ˌzōm\ any of the rod-shaped or threadlike DNA-containing structures of cellular organisms that are located in the nucleus of eukaryotes, are usually ring-shaped in prokaryotes (as bacteria), and contain all or most of the genes of the organism

Today, I got a rather unexpected Mother's Day present. Below is the road map of Jude. When this map was

spelled out, she was a fetus in my womb, and I was at home, crying myself to sleep because I was afraid of that third squiggly line over the number 21.

I find myself a little awed as I look at this road map. Awed in a way that I couldn't imagine when the Dr. first called me. This is Jude in her most basic mapping. Science is a wonderful thing. Because of science, my doctor was able to stick a giant needle into my belly, draw out some fluid, send it to a lab where they tested 50 cells and found in them the most secret aspects of Jude's being. 

Knowing that my baby carried an extra chromosome in the 21st trisomy, told me a great deal. I knew about the health risks. I knew she'd be intellectually disabled. She might not be able to hear or see as well as other people. I knew that she might never be independent. And I was filled with fear. I already had four children. Two have minor disabilities. I feared what having another child with disabilities would do to my family. Would we be crushed beneath the burden of care? That third haunted me for many months because ultimately with all that science could tell there was much science could not tell me. It could not answer these questions.

Now as I approach my 13th mother's day as a mom, I am thinking of how I'm going to frame this piece of this paper as a reminder that this a map not a narrative. A blueprint as opposed to a house. I am glad I got to see this almost five months into my journey with Jude. Now when I look at this stark black and white page, I am reminded that in a narrative there is more to tell. 

What this map could not tell me was that Jude would be beloved by us all. She would be her father's delight as were all his children. H would  show me a side to him that I did not know even after 13 years together.

I did not know that her eyes would be filled with that look of old wisdom that all my babies seemed to possess. That when she was born, they would lay her on my chest and she would be the first of my five children to look up at me right from the beginning. And in that look she placed her faith and trust in me. 

I did not know that she would like a clone of her sister Piper. That her nose would be a delicious nub of adorable. 

I should have guessed that she would have an interesting and complicated relationship with her sister, Rowena. This is a story that is only beginning to be told, and I am sure that it will be as filled with beauty and anger and frustration as is the story of Camille and Piper.

No test could have predicted that Piper would find in Jude that dangerous and beautiful love that shakes your world and changes your being. In Piper, Jude will always have a champion, a cheerleader, a friend.

Science could not tell me that when Jude smiled her whole face would transform into a flash of joy. That her laugh would be a hard bark of sound that makes us dissolve into giggles which in turns feeds her laughs. 

There is no test that could predict that Jude has already mastered the sardonic beastie gaze that just drips with incredulity. "You want me to smile? Right now? I don't think so."

I did not know that Jude would show determination so early. That I would come to admire her sheer will to do. 

And mostly I did not know that Jude would reveal things about me that forced me to change. Jude has brought out in me a fierce side but also a hopeful side. I am outraged but I am filled with courage, hope, and the light of a battle worth fighting. Because I had thought such horrible things and had changed so I know others can change as well. Really all I needed to know was that Jude was as human as the rest of us.

On this Mother Day's, I am blessed to have seen the earliest road maps to one of my children. It is a thing of amazement. But the greatest gift, is the gift of narrative. I have been privileged enough to be allowed to participate in the narratives of five amazing human beings. I have chronicled their joys, fears, and frustrations. I have documented the changes that have shaped me over the last 13 years. I have confessed my failings as I failed them. And just as often I have shared in the triumphs that come from those moments of understanding and connection.

What I did not know when I mourned over that map was that Jude would bring her own gifts and struggles to our lives. With Jude, I have learned that sometimes you can not linger on the future. She has made aware of how sometimes living in the present, in this moment be it beautiful, or filled with vomit, poop, seizures, constant hand washings, sly tantrums, screaming, scratching, fighting, is the only way to be. To be alive with the wild abandon that living a life with no limits allows.