We got a van!

Coverted Van
Meet Bertha. Big Blue Bertha if you’re feeling formal. She is finally, finally, after years of research and agencies and appointments and doctor referrals and funding negotiations and refusals and more meetings and two separate bids and test drives and waiting on forms and waiting on funding and waiting on more forms that weren’t filled out correctly the first time, and so much more waiting and red tape, she is ours.

This is actually the first new car I have ever owned in my life. And it’s the first car that is even in my name. I come from nothing and even the car that I lived in was a straight from the junkyard special with two kinds of paint and frame damage that made it so that if you opened the passenger side door you’d never get it closed again. For most of our married life we’ve made due with one car, or one car and something that had been passed through every one of Bear’s siblings. As our salary increased we’d get more recently used cars, but until this year we could only have made a new car work if we were willing to make major sacrifices and neither of us give a crap about cars, so we only cared about reliability.

But even once our finances stopped being so precarious, we couldn’t get a car that would suit Atti’s needs. The amount of work it takes to put in a lift or a ramp is mindboggling. The entire car needs to be changed to support the additional weight, seats and interior reconfigured, and that’s before you even get to the expense of the equipment itself. They are so expensive and they stay expensive because it is really really hard to find one on the used market. We’ve been making due with a van and my muscles.

Every time Atti has to go somewhere, I lift his lovable little 50 pound sack of potato self and put him in his car seat. Then I lift his equally heavy wheelchair into the back of the van. We drive to where we need to go, and then I lift the heavy wheelchair out of the back, bring it around to the side, lift him out of his wheelchair and get him all buckled in. Only after all that exercise do we get to actually run the errand we set out for. I don’t shop for fun. I never have days where I run errands. If I have to run two errands back to back that means I have to lift that damn wheelchair in or out of the car 8 times. If I buy something and it turns out to be wrong somehow, it usually just sits by the front door. Returns are more trouble than they’re worth. Amazon Prime is a gift sent straight from God.

But as I’ve thoroughly documented over the years, I am not a healthy person. I had major abdominal surgery in December. I have endometriosis and a host of other health problems and while I’m used to being in pain pretty much daily, the amount of pain I’ve been experiencing, when we just got the endo handled, has been alarming. I’ll write about this in more detail later, but I’ve gotten some new information about just how broken this dang body of mine is and one of the latest discoveries is that my neck is totally jacked. It’s so out of whack my spine is bent the wrong way. I bought a new bed, we changed my computer desk, and I’ve got some follow up to do, but carting a wheelchair around all the time was right at the top of the list for things to avoid if I want to keep from screaming.

LUCKILY! We were already well into the bureaucratic nightmare that is getting anything done with state agencies. So by the time we discovered my neck issue, I only had to wait about a month before the van was ready! And now here we are with my very first new car, with a ramp and special seatbelts, so I’ll almost never have to lift that wheelchair again.

We are so grateful to have such amazing people in Atti’s entourage to help us with this kind of thing. Until Betsy, our case worker at Alta Regional Center, we had no idea there were even agencies and vendors that would help us with this! We are overjoyed, and Atti is thrilled to be out of a booster seat and in charge of getting in and out of the car by himself. We are so lucky to live in California where programs like this exist and we have so much privilege to navigate those programs successfully. But even being white and native english speakers and upper class can only get you so far. I mention this not to be ungrateful, but because I want people who don’t have to navigate this world to know. There are so so many obstacles for the disabled that even all that privilege can’t get through it. For many people, buying a car is an exciting process. They dream about what kind of car they’ll get, what color, all the bells and whistles. For us, even with the agencies and programs that exist to help us, it is a ton of work. It took us nearly a year to get this van. We picked a make from a very short list of cars that would work. We picked a model and hoped for availability. Because we ended up working with a vendor that had a lot of resources we got the model we wanted but had to take the color they had on hand or pay for a different one to be shipped and pay a $1500 transportation fee. We decided the blue would be just fine.

We are so happy and so grateful, but it is never lost on me that this world is not built for people with disabilities. We are the lucky ones, with education and access and language and money to smooth the way, and the way is still so far from smooth.

But today was a win. So I’m going to try and ignore the bigotry and injustice that is a part of your life if you are disabled, I’m going to smile as Atti pushes his chair up that ramp, I’m going to strap him in, sit behind that wheel, and drive.

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Being Brave

Trepidation
Atti started 3rd Grade last week. It’s a big jump into big kid territory, and he has to do it with a new teacher for the first time since Kindergarten. A new teacher who doesn’t know him and all the sensory things that poke his brain, who won’t understand that there is a powerful brain inside that uncompliant body, who might not share his goals and belief in his abilities. He has to start from scratch with getting someone to see him. And it’s scary.

We spent time talking about the changes that a new teacher might bring and we talked about ways we could help her understand. We thought up ways for him to be brave and perform for the teacher until she saw his smarts for herself. I sent her video clips of Atticus, I wrote a big email explaining Atti’s behaviors and goals and how ready we were to contribute. I read that email to Atti and he bounced on my lap and strangle hugged me, but until he got into the classroom, nothing was going to be settled for him. He was still terrified he was going to get another teacher who refused to teach him, or a professional who would once again tell him he was too intellectually disabled to learn.

The more I learn to speak Atti’s language, the more I appreciate in new and profound ways how the discrimination he experiences keeps him from progressing. Ableism is disabling. When you have trained experts telling you things about yourself, how are you not supposed to believe them? I struggle with this as a grown ass woman, how is a small boy supposed to dismiss the ignorance he faces every day? I’ve learned that my role as his mother is not just to drill therapy into him and expect that to get him to the peak of his abilities, it’s to help him see his abilities for himself and help him believe he can get there.

First Day
Atti asked me to drive him to school for his first day. We rolled into the classroom and Atti asked me to stay. I took a seat in the back of the classroom to let his teachers do their jobs and they reliably rallied around him to make him feel welcome and cared for. Ms. Baker had been waiting for him and came armed with Beatles music she put on just for him. They started by discussing the days of the week and Atti answered every question first until Ms. Baker brought the month flashcards over and he read every one to her. Despite his anxiety, despite how hard it is for him to perform, and how much work it takes to get the words out, he was going to show her what he could do.

It was time for me to go so I went to tell him and as soon as he saw my face he busted out “I love my school!”

It’s so hard when the resources are so limited. When the teachers have so much they are responsible for and so little reward. I’ve had many professionals suggest that I homeschool Atti to give him one on one attention. They’re not wrong, if I were a homeschool mom and taught him myself one on one he probably would be performing better according to one set of measurements. Unfortunately, I am not a homeschool mom and I know that that road would lead to sacrifices that would not be for either of our optimal health. And I have a considerable amount of working mom/disabled mom angst around that. But then I think about how much more there is to learn than addition and the alphabet.

This world is brutal for people with disabilities. I know that for myself. But my disability is invisible and when I can move through the world, I don’t have the additional barriers that Atti does. Curbs and broken sidewalks and stairs don’t tell me every day that I am not welcome in society. People don’t stare and point at me whenever I leave the house. I have never had a teacher tell me that they wouldn’t teach me because they couldn’t understand how I was expressing myself. These are experiences I would give anything to take away from my son, but I can’t. The best I can do is teach him how to operate in it. I can teach him to prepare himself for reactions. I can teach him to perform to his best ability until people cannot deny what he’s capable of. And I can teach him to be brave, give people a chance, and recognize that someone who plays you Beatles music is worth knowing.

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Father’s Day Sensation

I’m perpetually behind these days, but in case you didn’t see it, here’s my boys being famous. I have watched these commercials dozens of times because they legitimately make me that happy even if my own family wasn’t in it.

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Finding Dory Review – from a kid who knows…

Finding Dory Reaction
I know it’s already been a couple weeks since Finding Dory opened in theaters, and by now, I bet most of the people who wanted to see it have seen it. But I still have a lot of feelings about it that I have to get out. This movie is IMPORTANT, y’all. And I need you to see the message clearly and teach it to your children.

Finding Nemo came out before I was a mom, so I didn’t pay it a ton of attention. I saw it like everyone, but I didn’t examine it.

Now that I have Atti, I’m suddenly aware in a whole new way that Nemo has a disability. Nemo has a “lucky fin” from a birth injury, and the whole movie is about him learning how much he’s capable of and his dad learning how to stop protecting him so much he can’t try. That’s a powerful and beautiful message for a kid like mine, and it’s one we believe. Early in his childhood we worked with a PT that drilled it into me: I had to let him fall. I had to remember that he wasn’t made of glass and that toddlers fall hundreds of times a day. That’s how they learn to use their bodies, and mine was no different. So that’s what we do. I smirk as other moms give me sideeye while I make my kid get out of his wheelchair by himself to play on the ground. When his wheelchair tips over and he falls on his face, the hardest part is dealing with other people’s reactions, not Atti’s. Between our family? We’re nailing the “let your kid do their thing” thing. It’s the rest of the world that makes that hard.

Finding Dory picks up immediately after the events of Finding Nemo, with Dory happily settled down with a reunited Nemo and his dad, when she realizes that she has no idea where her own family is, and her short term memory problems make finding them seem impossible. Dory is nothing if not optimistic, though, so instead of listening to the naysayers and the people who mock her for her disability, she sets off to find them, and of course, after going on a series of adventures, she does.

There are so many beautiful, tender, heart exploding moments in this movie. From my twin positions of someone living with disability and parenting a disabled kid, I could write a thesis about it. But what is most important to me about all of it, is how Atti reacted to it.

There are so few times in his life that he sees ANYONE like him on television as anything other than “The Magical Burden,” that seeing an athlete with an insulin pump on American Ninja Warrior has me dragging him out of bed to make him watch. Disabled people never get to win. They get to teach lessons and die.

But in this movie, not only do you have Dory with her short term memory problem, and Nemo with his lucky fin, you have a blind whale shark, a beluga whale with a head injury, and an octopus who lost a limb and seems to suffer from PTSD. This world is a brutal place for any disability, and each one comes with their own challenges and benefits. I LOVED LOVED LOVED getting to see an array of characters with diverse disabilities, including a bunch of cognitive disabilities, work together, discover their strengths, and be the heroes.

Because of Atti’s cerebral palsy, he doesn’t walk and uses a wheelchair. And that can be real tough. But he also has speech aphasia and struggles to communicate, and that is what causes the heartbreak. People treat him like he’s in a coma. As if he has the thinking skills of a beloved pet. He’s had teachers say to his face that he was retarded and that his reading skills were a fluke. He’s had family members, while he played at their feet, say that it was a shame he would never get married or ask if he liked watching The Simpsons for the colors.

But I know how to speak his language and I know just how much brilliance and insight and heart and bravery is in there, and I won’t rest until the whole world sees it. I will build paths of seashells across the whole of the internet until people see the magic in my kid is not a burden, but the joy of my life.

If you’ve never watched another video I’ve ever made, please watch this one. Show it to your kids. And tell them that there are so many people like Dory out there. And the world is lucky for it.

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Year of Pleasures: Therapy Animal Collector Cards

Animal Therapy Cards

Atti had his hip surgery at Shriners Hospital here in Sacramento, and I thank my lucky stars every day we live so close to them. Shriners is the very best place to be for a kid like Atti, and they also do exceptional work for kids who have survived horrific burns, paying for many kids from developing nations to travel in and receive treatment.

Having a whole hospital geared to the needs of kids is such a tremendous gift for us. There’s a whole floor filled with toys and books and games, flooded with sunlight and pop music and art projects, each kid is greeted with a sack of presents, and my favorite, therapy animals make rounds.

This trip I learned that not only do therapy animals make rounds, but each therapy animal has a collectors card made up. So the kids can have a memento of the great visit they had.

In my utopian fantasies, teachers will be celebrities and instead of cards for professional athletes, kids will spend hours lovingly collecting and trading the cards of adorable service animals. That world would be so much happier.

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Please Don’t See Me Before You

You Before Me
Me Before You is opening next weekend, and I’m begging you to ignore it. It’s a real shame because the actors are lovely and I’m sure everyone behind the production is good people, but this movie is dangerous.

Spoilers ahoy:
The beautiful man is a successful dude with everything going for him and then gets hit by a car and is paralyzed. He believes there is nothing for him but death, so his family helps him to work towards physician assisted suicide. Meanwhile, his parents hire a beautiful Manic Pixie Dream Girl to teach him how to live. But! TWIST! Instead of Manic Pixieing her way into his edification, he Magical Burden’s his way into hers. He kills himself anyway after teaching her how to reach for her dreams.

I am actually highly in favor of physician assisted suicide. I live with both mental illness and chronic pain. I understand that there is some pain that is both unrecoverable and unlivable. My problem is not that a man wanted to kill himself. If this was a documentary or a biopic or a film based on a memoir I would bring more nuance to this. But it’s not. It’s a fictionalized love story that relies solely on tropes that are harmful to humans. It sends a message that not having motor skills is to render a person a burden not worthy of life.

The character in this movie would rather be dead than disabled. I posted a link to this essay on my facebook wall and someone came back with their own experiences of facing a similar tragedy and wanting to die so as not to be a burden on their loved ones. People really do feel this way. They are out there and those are their real feelings, but what put those feelings there?

Society. Media. Every message we ever get that says we are only worth anything if we are thin enough or pretty enough or white enough or rich enough. Because all of society makes it so. It is internalized ableism. There are black people who hate black people, women who hate women, gay people who hate gay people. This is what happens when you live in a bigoted world and you are from an oppressed group. You get the same messages as everyone else, and some people believe them. People who would rather be dead than disabled believe the lie that they are a burden not worthy of life. This is what oppression looks like.

So here I am, trying to raise this beautiful brilliant boy. This boy who most days doesn’t want to leave the house because people look at him funny. Who has been invited to two birthday parties in his whole eight year old life. Who is constantly being ignored and talked down to, spoken about as if he’s not in the room while adults guess at what his future will look like. “He’ll be lucky if anyone ever marries him.” they say. Or “You should be happy if he can ever learn to make change.” Who has a handful of people in his life he can count on to treat him like a human being. And THE ONLY TIME he ever sees anyone like him in his entertainment, is when they exist to make other people around them be better people, and then they die.

I’ve written and spoken about this phenomenon, calling it the Magical Burden. (Based on Spike Lee’s idea of the Magical Negro).

Whether it’s Cuba Gooding Junior in Radio teaching a football coach how to feel or Walt Jr. in Breaking Bad giving his father motivation to get money, you won’t see a disabled character actually having their own story, and they’re almost never played by a character with a disability (Breaking Bad did get that part right). They are played by actors chasing prestige and Oscars. These characters only exist to teach lessons and give people without disabilities some perspective. And that perspective is always “It could be worse! You could have a disability!” In the case of this movie, the perspective is “Better live life to the fullest! You could get hit by a bus tomorrow and be crippled forever which is a fate literally worse than death!”

What I need you all to understand is that that attitude hurts my son.

It actually compounds disability. I’m trying to teach Atti to have faith in himself, in the world, that it’s all worth the effort required for him to engage. I’m trying to coax him out of his shell and keep him motivated and every time he turns around all he hears is “Why try? It’s better to be dead than disabled.”

Please think about that. Think about what that would do to you. If every message you got was that it was preferable to be dead than to live the way you live. How could you find the motivation to keep going? As an eight year old child? As a parent, how would you feel if you knew your most important job was to keep your child from believing in the worthlessness the whole world tries to sell him?

This movie is not about a man who wants to die with dignity and control his fate. It’s about a man who believes it’s better to be dead than disabled and a family who agrees with him. It’s about the ugliness in our society that believes self-sufficiency and contributions to the economy are the highest virtues a person can attain. That belittles the soul and the heart and the humanity of people who function differently from the norm.

Please don’t see this movie. Watch Atti on my YouTube channel as he fights to be seen. Watch Zach Anner or Becoming Bulletproof or Josh Blue. Make a friend who uses a wheelchair or crutches. Fight to make sure that all your spaces are accessible. Invite a kid who moves differently to a birthday party.

There is something worse than being disabled. It’s believing that the whole world only sees you as a burden. Do something to prove that’s not true.

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My Mother’s Day Gift

Mother's Day

Atti has gone back to school. Finally. He still has a whole lot of recovery ahead of him – he can’t scoot yet or sit up unassisted – but he’s back in his red wheelchair which is what we needed for him to be able to get back to his routine. Lucky for me, it was right in time for him to make me a Mother’s Day present.

It came home with him from school wrapped up with a card and a ribbon and I asked him if I could open it then or if I needed to wait. With a smirk he told me I had to wait until Mother’s Day morning, so we set it on top of the fireplace.

Atti’s been sleeping in our bed for weeks now. Being strapped to a pillow to keep his new hip joints in position and then put in a hospital bed too far off the ground for him to get down from even if he could move just proved to be too much anxiety for one boy to take, so he’s spent every night in between me and Bear, his giant leg wedge pushing us so far apart we high 5 to say goodnight. But on Mother’s Day morning I woke up to his arms around my neck and him kissing me awake, no matter how hard I tried to sleep in. He was more excited for this than Christmas.

We went out to the living room for some breakfast and he told me I could open my present. I unrolled a reusable grocery bag decorated with his little handprints in the shape of a sun, and a handpainted card that read, in his own wobbly handwriting, “To Mom: I love you. Love Atticus.”

This is what I looked like:

As I was weeping, Atti just looked at me with a sly little grin on his face. He was so proud of himself. Usually when he brings things home from school they don’t stick around long. I don’t bother saving the work of his teachers, who are usually the ones behind the art projects, but this one was different. From how he made me wait, to his little face when I opened it, to how he was so excited and proud of himself that he couldn’t stop jumping long enough for me to take this picture, it was clear he was behind every part of this. And he felt so good that he was able to give something instead of always being the one in need of giving.

This was the Mother’s Day that I had been dreaming about for years. Full of messy art projects and adorable expressions of love. This was the first year that Atti was really able to express himself. Unless you watch him closely and really take the time to understand his expressions, he seems disinterested in so much of what goes on. But really, it’s not disinterest. It’s counting on people to look past him and not wanting to put in the effort to change their assumptions. But I know how to speak Atticus, so he showed me. He held that damn pencil and he struggled over those letters. He planned a surprise for my special day. He reached way outside himself and he did it to express his love for me. It’s just too beautiful to bear.

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Year of Pleasures: Seeing Atti’s Future

At 8 years old, Atti is starting to cross over from the little kid phase to the big kid phase. And with that comes all the development that starts to freak parents out. All the development that will eventually wind up in independent adulthood, but right now is just kind of scary. And for a kid with significant motor disabilities, it’s even scarier. While many parents are worried about what dating might look like for their kids in a few years, parents of kids with disabilities worry if their kids will even have friendships, let alone dates. I worry that as his body continues to grow that I’ll be able to meet the demands of caretaking. I worry about his struggles in school and what that might mean for his future. If he’ll be able to live independently, be hired at a job, study at college. I know Atti is capable of everyone of those things, but I worry if the world will let him in to try.

Lately I’ve come across a couple of exceptional pieces of media that have rendered me crying in the fetal position, not out of fear, but out of gratitude I could barely contain.

I stumbled across the documentary Becoming Bulletproof while I was flipping through my cable channels and I watched the whole thing with Atticus, despite there being some frank sexuality talk that he might have been too young for. But then again, maybe not.

The documentary is a behind the scenes story of a group of actors making a movie. Only most of the actors have disabilities. You watch as the able bodied crew is constantly surprised at the abilities of the actors – making interesting choices, playing to their strengths, falling in love with someone else on set, having dreams for their futures. You see the intense emotional cost of having to live in a world that doesn’t see you as human. And how that emotional cost actually exacerbates the limitations of the disabilities these people have. You see disabled adults actually expressing adult emotions and experiences in a way that is NEVER done in media.

One of the actors is a man named AJ who has cerebral palsy and I kept stopping the movie to make sure Atti was paying attention to someone on the screen that was just like him. Someone just like him who always had this secret dream of being an actor, but knew he couldn’t make it happen on his own in his current circumstances. But at this camp, a camp for actors with disabilities to go to and make one movie a summer, he could. And you watch him overcome his physical limitations, overcome his hard won insecurities, and deliver a performance. You see how much it means to him to contribute, to have people depend on him, to live his dreams. And I sobbed and I sobbed and then I found him on twitter so I could fall at his feet in gratitude that I had this movie to use to mentor my son through his own limitations and insecurities.

I want every single person who loves Atticus to find this movie and watch it.

I’ve been a fan of Zach Anner’s since I saw him on Oprah Winfrey’s reality show where she was giving away an OWN television show. He was funny and charming and above the usual reality show squabbles because he was really trying to do something more than just be on a reality show. He has an awesome Youtube channel and has just published his first book If At Birth You Don’t Succeed.

Zach also has cerebral palsy and uses a wheelchair to get around, just like Atti, just like AJ. He is funny and winning and vulnerable and in both his Youtube videos and his book he discusses his disability with humor and charm. No self pity, but also no apologies. A lot of the book revolves around his romantic life which I found to be so wonderful. It was full of relatable humor – everyone knows what it’s like to be clueless and fumbling while longing for love – but also really examined the barriers the world puts up for anyone who doesn’t function in the one particular way that most often occurs. He jokes about all the times a curb keeps him from shopping, how his wheelchair breaking down causes no end of problems, how his eyes make reading and school challenging, and all the times he had to find a work around for those barriers or give up. And with his ingenuity and humor he found enough work arounds to accomplish more than most people.

Watch this movie. Read this book. Think what your life would be like if you had different barriers in your life, but the same brain in your head. How it feels to be denied opportunity. And then help me make the world bigger for Atticus.

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Welcome to Bummertown

Most depressing picture ever

My life has always been relentless. But this is ridiculous.

Everybody suffers in this life, and I really really dislike it when people stay stuck in their pain and treasure it. When they insist that their pain is THE MOST SPECIAL PAIN. When they refuse to gain empathy or perspective and just canker. I’m not one of those people that falls for the “someone always has it worse so you don’t get to be sad” trap, but I am someone who believes that pain is not an exclusive club and you are never alone in your grief. Which is why I blog.

I’m not a war refugee or a torture survivor. I’ve never been incarcerated for something I didn’t do. But that’s pretty much how far I have to go to find someone who has had it worse than me, and in a way that reveals either my total brokenness or my health and resilience, I can never decide which, I find that somehow comforting. And hilarious.

It’s hilarious because I have a twisted sense of humor and an appreciation for the absurd. It’s comforting because this world does not know how to deal with pain. Every negative emotion is a problem. And if you are a religious person, it’s of the devil. We’re supposed to fake it till we make it and look on the bright side and have a positive attitude. And those things are all fine if you’re grumpy over daylight savings time or frustrated with the people you have to share a living space with. It does not work for tragedy. And it DOES NOT work for mental illness. But that’s what we get anyway. One size fits all advice even when it binds us.

Because of that, we often need permission to feel those feelings. We need someone to say, “That is really hard. It must make you sad.” or “That would make me feel really angry.” Most of the work I see happening in group therapy or among friends or in my role as a peer counselor is validation. “I see that. It would make me feel frustrated too,” feels like salve on a burn. “You are right to feel that way,” is like an incantation. We spend our lives either hiding and ignoring our feelings, or fighting for the right to have them.

So when I am *this* sad, and *this* weary, it actually feels perversely comforting to look at the facts and go, “Yeah. You should be sad. The only thing that would be worse is if you were trying to escape Syria right now.”

Atti’s surgery went really really well, but his recovery has been super rough. He had to stay twice as long in the hospital as he was expected to because a body with Cerebral Palsy is like a beautiful 150 year old house. Even in the renovations you’re going to run into problems. Atti’s bladder refused to work, so he had to be catheterized for far longer than expected. And the catheter kept clogging leaving him writhing in agony and screaming “I’m Sorry! I’m sorry!” over and over again, but unable to tell us where it hurt or what the problem was. His spastic body ramped up with fear and pain until his whole body was tied up with cramps, and every treatment for one thing caused a new problem somewhere else. He was in such turmoil that he could only be calmed if one of us stood at his bedside petting his hair and playing his special lullaby over and over and over again. For seven straight days.

And in the middle of all this, I started bleeding.

For two years we’ve aggressively been pursuing fertility treatments. Treatments that forced me into a mental hospital and major surgery. And, because, of course, when all the conditions were finally right for embryo transfer, Atti was about to go in for the surgery we’ve been waiting for for a year. Of course. And while he was in this painful recovery process, that’s when it became obvious the procedure failed.

It’s hard to know what to call this. It wasn’t that I just got my period – this was a rejection and far more physically involved, but since I wasn’t technically pregnant it’s not exactly a miscarriage either. But those embryos meant something to us. To Bear they were babies. To me they were possibility. And either way, they’re gone.

And we just had to keep putting one foot in front of the other to be there for our boy.

We took Atti home a few days after that and it’s still been harrowing. His catheter got caught on the wheelchair when we were trying to load him into the car and broke and partially pulled out. Atti was screaming, I thought we’d have to be readmitted, and there was a moment where I honestly began to collapse and prayed for death to claim me there and then in the hospital parking lot.

His pain has been so intense we’ve had to keep him medicated around the clock, which meant we were waking up every four hours to screams of pain and had to soothe him back to sleep for another hour, like we had a newborn that couldn’t be removed from their crib. His catheter clogged again, only, not being a medical professional, I didn’t realize what I was looking at and thought it was opioid constipation, so he screamed all day until a nurse friend came over to help us. Then it happened again the next morning and we had to take him back in to the hospital and spend the whole day there while they tried to see if he was ready to leave the catheter behind.

Atti in recovery

Today he is outside in the sunshine playing on his ipad. He has left the pain medications behind and is now soothed by music and attention. He’s still strapped into all his immobilizers and can’t sit up, but it’s only boredom we have to fight now, not pain. Which means that all that grief I’ve been shoving away is sneaking back up on me now. So I tell Atti I have to work and go into the bathroom for a 5 minute break down. Or I’ll cry at his bedside and tell him that I’m sad we don’t get to have more babies in our family right now because I think it’s important to show him how to cope with hard emotions.

I’ve been hiding in work – work I haven’t announced here yet because there was too much hard stuff in the way, but I’m developing a media startup, complete with keeping startup hours – but over the last couple of days I’ve been blocked. Completely blocked over the dumbest stuff. I need to work on our social media campaign and just write a bunch of FB statuses, and I can’t do it. I’m staring at cursors and debilitated by depression. Because now that the crisis is over, it’s time to process. And I don’t want to.

But that’s another thing about having a life as hard as mine. You only have two choices for survival: 1) ignore and deny it all and let it corrupt your soul, or 2) deal with your shit. So I’m dealing.

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Full Circle Moment

Sesame Tweet

This is what I woke up to this morning. I’m going to try and explain how this is a sea change for me. It’s going to be a total bummer of a story, but hang in there. There’s a happy ending.

I’ve written and spoken pretty extensively about my abusive childhood, but I rarely tell the stories. I have a selection of stories that I think are hilarious in their downer-hood, and some stories that are only hilarious to me while the rest of the room gapes in open mouthed horror, but I rarely give out the gorey details. This is purposeful and I have a lot of reasons for it, but I’m going to break that rule so I can explain just how important this tweet is in my life.

My childhood was abusive and neglectful. A lot of people have sadness and trauma in their childhood and part of the reason I don’t tell my stories is so that they can’t be ranked. I am not interested in playing a game of “Who Had it Worst!?” (Boy, would that be some weird theme music.)

Many people experience abuse and trauma. But my parents? Were experts. They went to creative and innovative lengths. It’s like, if everybody eats, some people really really enjoy food, and my parents were foodies. My parents were the foodies of abuse.

I have a specific memory. We lived in a house in Broomfield Colorado, and my younger sister and I were too young to start school. Which meant that I was 3 or 4 years old. We lived in the basement and my dad worked days while my mom worked nights and my two older siblings went to school. So I was home alone with my younger sister until my mom came home from work, and then we had to be quiet while she slept after her shift. And kept sleeping until everyone got home. So my sister and I would stay in the basement by ourselves until my siblings came home from school. Sometimes my mom would call down the stairs and hand us a bag of donuts on her way off to bed, but most of the times we would fend for ourselves.

I was three or four years old and I was climbing down the stairs with a bowl of cold cereal, trying to balance it carefully so I didn’t spill the milk on the stairs and face trouble. I’d set us up in front of the TV and we’d watch Sesame Street and Mr. Rogers Neighborhood and that was the only happy part of my childhood.

I learned to read at 3 years old because of Sesame Street. I had friends who I felt cared about me. I saw happy families and people and muppets work through conflict with understanding. I would pray that Maria and Luis would adopt me and that Grover and I could be friends.

I grew up and I learned to keep secrets. I learned how to hide and let people believe what they wanted to believe. And like most abuse survivors, I believed that I was intrinsically damaged and dangerous. I believed that there was something so wrong in me that my parents couldn’t help but abuse me. It was easier to accept blame than it was to face that the people who were supposed to protect me were dangerous. And as I hit my teenage years and began to think about my future, I knew in my bones that children could not be a part of it. I *knew* that I was a Nitrogen bomb and that when the day came – and of course it would come – that I exploded, everyone in my path would be charred. I was a 16 year old high school drop out who lived in my car. I was a street rat. The life lessons I had to pass on were how to spot trouble, how to dodge, how to hide, and how to climb through a vent to get to the locked up food. Nothing a happy child should have to know. I knew that the best way I could protect my potential children was by not having them.

As the years went on, that shame became a secret too. In our society having kids is still pretty much a given, and for a girl in a religious environment it’s all but a fact. All of those feelings became a burden that inspired reinvention and denial. As I kept getting older and faced the years of infertility, I was nearly crushed under the conflict of an honest desire for children to love and a secret relief that they weren’t coming.

I worked really really hard at addressing that. I have always been diligent about getting emotionally healthy and this was one area that I dove deep into. People tell me a lot that I’m brave because of what I talk about publicly, but it doesn’t feel brave to me, it’s just how I’m wired. If I’m going to claim any bravery for myself it’s in staring the ugly right in the face and dealing with it. Whatever success I have as a mother is because I did that. I opened that door and I looked in the dark corners and I faced it all down so that my children wouldn’t have to.

Getting that tweet from Sesame Street brought me right back to that 3 year old me. It brought me right back to that loneliness and longing and that hope that someday someone would love me. And it made me realize, again, in a way that 3 year old me could understand, that I did it.

I took all the ugly that I was handed and I transfigured it into love. And because I did that my child will never know that world. He will be untouched by the Nitrogen bomb because I spent years defusing it and turning it into fertilizer that nourishes the soil and creates beauty.

That tweet was a pat on the back from a beloved family member, telling me that they were proud of what I’ve done. I don’t have parents or grandparents to tell me they’re proud of me. I only communicate with two siblings who live far away. No cousins. No aunts or uncles. No family friends or old teachers or church elders. There is no one in my life who could have offered that and had it mean anything like this. This was a gift that I will treasure forever.

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