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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The secret to quality healthcare

Tramadol

In December I had major abdominal surgery to treat my endometriosis. My stomach was expanded with air to a truly alarming size and then each of my internal organs was lasered clean. Including all whatever long feet of my intestines. You might imagine this kind of surgery would require a minute to rebound from, and you’d be right. Digesting is still a trick I haven’t remastered, and my abdominal muscles are shredded wheat.

And then just over a month later Atti had double hip reconstruction, rendering him completely immobile for 8 weeks. Getting him home was so horrible I was *thisclose* to laying down in the parking lot and waiting for a hospital van to run over me. Bathing, feeding, changing diapers, all had to be done without moving his hips. He was a 50 pound sack of potatoes that screamed when you carried him.

So with only shredded wheat abs to rely on, it was only a matter of time before I hurt my back. Luckily I managed to get through the worst of Atti’s recovery and now he’s back at school for most of the day, but for the past several weeks I’ve been doing everything I can to avoid anything heavier than my cats and trying not to scream every time I had to shift my weight.

I went to the doctor, bracing myself for another round of “Pat Tresa on the Head” as another invisible complaint rendered me unbelievable. But I had an entirely different experience. My doctor shot my back up with Lidocaine and then handed me a GIANT bottle of Tramadol since I refused her offer of Oxy.

All I have to do is mention that I’m taking care of a kid with cerebral palsy and the prescription pads come flying out. I have more drugs at my disposal than at any point in my entire career of sickness. There was one point when a gynecologist was prescribing me one pill at a time and insisted that he would not treat me until I went to a therapist. When I start giving my history to a GP, I can feel them pushing me off to the side the more I talk.

But now I know. All I have to do to get pain medication is not chalk it up to a lady disease.

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Building our Family

Family

When I imagined my family, I always had this image. I was standing at the head of a Thanksgiving table loaded with food, raising a glass to offer a toast of gratitude. I look around at every seat filled with someone I love, and I see the love they have for me reflected back. I’ve had plenty of dinner parties and events with full tables, but the image was distinct because of the depth of feeling. These were not guests, they were family. They were connected to me forever. And every failed procedure or adoption pushed that dream of mine further and further away.

Having Atticus made that dream complicated, because I had to admit, from very early on, that his future was unscripted. The fact is that every person’s future is unscripted – there are no guarantees of marriage or children or health or even good relationships – but most parents don’t have to admit that until their children become independent. I had to face it from the very beginning. So, while there is still every possibility that Atticus will grow up and get married and have children, I knew from early on that I couldn’t count on it. And I was not willing to let go of counting on it.

When I’m honest with myself, that’s a huge part of the pain behind infertility to me. I want the illusion of planning a future. I want to be able to believe that I could have a child that would meet every milestone, that would happily and uncomplicatedly grow up, fall in love, have more children, and surround me with my dream. Intellectually I know that is not only impossible to guarantee, but inappropriate to put on a kid whose only obligation should be to walk their own path and not mine. But that is a wicked hard cultural norm to fight against. Not only do most people expect no less, they feel entitled to no less. If you’re a real glutton for punishment, go into some parenting group and suggest that some of those precious snowflakes will end up a disappointment. You’ll be lucky if you leave with your eyeballs in tact.

Even during our pre-Atti infertile years, I wanted to love the concept of Family Is What You Make It, but I usually just found it disappointing. We moved so much that any friendships we assembled would fail under long distance pressure, differences in life phases would take their toll, and people would usually have different expectations out of the relationship than I did. Most people don’t go through life family shopping after all. So my heart would just break, over and over again.

Last July I met up with my niece Holly for the first time in years and years. We went to lunch and told each other our life stories and laughed and laughed and when things stopped going her way where she was living we invited her to come live with us. She moved in back in November, just in time for my abdominal surgery, and then the whole rest of the shitstorm we’ve been living through.

In February my friend Jenn had a similar situation. Things stopped going her way where she was. She’s working on a startup that will result in refugees and immigrants getting access to legal aid and I believe in her and I believe in her project so I invited her to come and stay with us too. Just in time for Atti’s surgery and the whole rest of the shitstorm we’ve been living through.

In one sense it seems like the timing couldn’t have been worse. There were times that were really challenging to manage. Holly moved in not having a drivers license and needing a job and for a while there it was complicated getting her everywhere she needed to get. Jenn now works alongside me every day, her on her laptop working on her projects and me at my desk working on mine, and some days we spend all our time talking when we each had deadlines we were supposed to be meeting. There’s two more adults eating and sleeping and hanging out and that has changed the dynamic of our simple little threesome right when everything was so so so hard.

But I don’t know that I could’ve gotten through it all otherwise. For all the complications and negotiations, I also have so much more support and so much more love. When I’m having a pain day I have people who will tuck me in and bring me platters of snacks. I have more people that will talk with me through all the big decisions I have to make, who will love Atti ferociously, who will validate hard things in my past, who will make me appreciate who I am and where I’ve been, who will let me love them.

When we’ve gone through hard things before, Bear and I will tackle them like partners. One of us on house stuff, one of us on Atti stuff. Or one of us on work stuff and one of us on family stuff. We’ve had to divide and conquer. But now, we’re a squad. And when we’re all together hanging out and watching a movie together, I just want to explode with happiness, even in the midst of the hardness. I just love my team so much.

I think I’ll get my dream. Maybe just not in the timeframe I imagined for myself, but that seems to track with how my life works. All the things I have tried to claim for myself have blown up spectacularly, but the things that are brought to me are the things that last. It’s so unsatisfying that I can’t just make what I what happen when I want it and how I think I want it, but I think God likes surprises. And likes the struggle.

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One foot in front of the other

Snuggle Party

If you’ve ever experienced deep grief, you know this. If you’ve mourned a parent or spouse or child, been intimately involved with the care of someone fighting cancer, survived an attack, had a sick kid, dealt with some kind of grief that came out of nowhere and upended your whole world, you’ve seen that there’s a whole other world right along side the one everybody accepts as reality.

Right along side of all the mundane trips to the grocery store and Facebook political arguments, there are people walking around like shadows, confused as to how the whole world is going along like nothing has changed when their world will never be the same.

It’s not the same as being depressed. That’s a different shadow world. Most of the time I’m not even sad, although there’s plenty of times when it sneaks up on me and I need to respect it and give the sadness the attention it requires so it will move on without me. Most of the time I’m just feeling kind of melancholy as I keep moving to get the job done. Meals need to be cooked, then fed, then cleaned up. Then Atti needs to be cleaned up because eating every meal in bed makes a gross mess even if you have full use of your motor functions. He needs to be entertained, and moved from room to room, and kept calm and hopeful, and I have stolen moments here and there until Bear gets home from work.

Meanwhile I check in on Facebook and see people going about like normal. And it’s just confusing. People have been so kind and supportive, I have no complaints about my friends, it’s just…weird.

One time I watched an episode of Law and Order that was particularly haunting to me. It was the one where they did a take on the Michael Jackson molestation scandal and in the L&O universe, the parents knew what was going on and allowed it to happen so they could have money to pay off medical bills. I found the whole thing so shocking, and possible, that I dreamt about it all night. And then when I woke up, in that early morning grogginess, I remember waking up and checking my phone and wondering why it wasn’t every lead story in the news.

That’s how my life feels right now.

I see something silly in my twitter feed and I think, “Seriously? THIS is what you’re thinking about right now? When calamity is so close to all of us at any moment? When tragedy has moved in and made themselves at home?” And then I have to remind myself, every time, that it’s my tragedy. Not the world’s tragedy. It is only this big to me.

I’m sad, but I’m not, I don’t know, in danger. This is different. I almost feel taken up. Inducted. Transfigured. It’s like trying to describe an altered state or a religious experience. It’s ineffable. It’s hard, it’s sad, but it doesn’t always feel as simple as that. It’s deep. It’s profound. It’s heavy.

This probably sounds like one of the most depressing things I’ve ever written, but I don’t feel that way about it. Well, sometimes I do. I’m not a rock. I am definitely skirting around depression and using all of my strategies to keep it at bay. But I almost have a sense of awe about it all.
Like when an astronaut does a space walk and gets a glimpse of their place in all of creation. Like I’ve gone so far down I’ve come all the way back around and I’m looking at the backside of enlightenment. I’m astounded that in spite of all my sorrow, the world keeps turning. And somehow, in my dark way, I find that hopeful.

When I was 15 I had foot surgery and very much like Atti right now, I spent 6 weeks mostly in bed. I got to move around on crutches, but that was extremely hard for a clutzy girl on the slick streets of the Pacific Northwest. I didn’t have anyone to take care of me so I had to crawl up the stairs to get myself some food and find my own way to keep myself entertained in the pre-Internet pre-iPad days. I spent most of my time cross stitching a sampler that said “This too shall pass.” I tried to believe that and tried to let that be enough. But for 15 year old me 6 weeks was an eternity. It wasn’t enough. I finished that sampler and I stuffed it in a drawer. But now, with a fully developed prefrontal cortex and some life experience behind me, it might be.

That I think is the lesson of this shadow grief space. It all passes. Life passes. Loved ones pass. Possibility passes. Grief passes. The rain is pouring down outside as I type. The local dam opened a spillway for the first time after drought plagued years. The morning glories are spreading across the redwood bark in the yard. Kids come home from school and splash in the puddles. The squirrels and the birds are fighting over the birdfeeder. Odds are that I will never have another baby. Parents get older. Friends get sick. It all passes.

It’s all only unfair if you believe you have a right to expect something different. But you don’t. It all passes. None of us have the right to break the laws of nature. It all passes.

I’m not a fan of one size fits all self help approaches. I don’t believe that suffering makes you a better person. I think that most people allow suffering to pickle them and then they punish the world for their experiences. I don’t believe that Atti was given to us because we’re such exceptional parents and could therefore handle his disabilities. Foster care is so full of special needs kids there is no safe place for them all.

What I believe is that empathy makes you a better person. And anytime we experience suffering, we can choose to let it expand our empathy or shrink our souls. In this shadow grief space, I see how densely populated it is. How many people are walking with hurts that the rest of the world refuses to acknowledge. How healing it is to have your grief witnessed.

It will pass, but I hope that I can remember this.

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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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More in Viral Adventures

Skater Atti
So, in case you’re not following along on the FB page, Atti’s viral moment is only picking up steam. We’re now in the “local news picks it up” segment of the journey and heading straight for “national news begins to pay attention.” I’ve had to set all my other responsibilities aside as I became his accidental full time momager and suddenly developed a tiny shred of empathy towards Kris Jenner. Just a shred.

We’ve reached the point where I can’t keep track of all the views. So many outlets have shared it on their pages that I don’t know how to even find them all. At last count we had crossed the 20 million mark. Upworthy, Buzzfeed, Ask Men, LittleThings.com, a TV show called Right This Minute, the front page of reddit, trending worldwide on Facebook, and that’s when the local news came calling.

Atti and Dad
First there was the ABC affiliate. And then there was the Fox affiliate. Each news outlet did their own version and I think each story is worth watching because my child is so gorgeous and lovable, but your mileage may vary. Then USA Today picked up the ABC affiliate story and had it on their front page for a minute. AOL.com ran the story.

Atti on CBS
This is a still from my favorite news story so far. The local CBS reporter just got us and Atti put on a full scale charm offensive. He is turning into such a little ham. But mainly it showed me that all the viral notoriety is worth it for my baby to go on the news and tell the world how he loved my kisses. I will never be the same.

Then CBS.com – the national news – picked up the local affiliate story. So did FoxNews.com. And all week my phone has been ringing with other offers, more conversations, more attention. And Atti is just so happy that the whole world is seeing him as a cool kid and not an afterthought or a burden.

I know there are lots of new readers with all this attention, so let me give you the Clif’s Notes. Below is a playlist of all of Atti’s videos on my Youtube channel. And here is a collection of all my best Atti stories. He is not only a great kid, but the best person I know. I’m so proud that the world is getting to see what I’ve always known.

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So. What’s new with you?

IMG_2142

Hey pals.

So. Last we spoke I was calling “uncle” during the run up to Christmas. Turns out that major abdominal surgery during the holidays tends to throw a monkey wrench in your productivity plans. The recovery was pretty brutal. Six weeks, so, technically, I’m STILL recovering. But today I got Atticus on the bus all by myself, and then went for a two mile walk around the lake. That feels like a benchmark.

During my post-op appointment my surgeon told me all about what he found, and like surgeons often do, he made it sound like it wasn’t that out of the ordinary. And for him, maybe it wasn’t. All he does is look at endometriosis ridden bodies, after all. But when my fertility clinic saw it they all lost their minds. My nurse Sue called me up saying “Oh my gosh!! We had no idea it was so involved! How were you walking?!” Which, I won’t lie, felt pretty great. Some people compete in triathlons, I just get through my day with my innards all attached to each other.

There was scarring and adhesions and fibroids just EVERYWHERE. On my intestines, blocking my uterus, attaching my ovaries to the inside of my pelvic wall like they were one of those fraternity pranks where someone is plastered to the wall with duct tape. My bladder was “fused” (that was the actual word the surgeon used) to my uterus. And of course scar tissue from the emergency C-section that saved me and Atti. It was a crime scene in there.

Recovery has been super hard – give thanks for your abdominal muscles next time you need to cough or poop – but I’m feeling so much better. It’s been years since I had this much energy and motivation. Since I had…hope? That I wouldn’t always need to apologize for backing out? Or begging off? Or asking for help? That maybe, if I’m lucky, I’ll be able to just..do..all the things that so many people take for granted.

Including having a baby. We’re in the middle of our latest attempt at a cycle right now. Just yesterday I climbed up into those stirrups that I should really just start paying rent for at this point, and had another ultrasound. From my many years of tracking my ovulation, I know that I tend to go pretty late in my cycle, which is a bit of a problem when you’re trying to control so many variables. My reproductive system is just too punk rock to be controlled, though. It’s all “Go ahead and pump all the medicine you want in me. I won’t be rushed. I do what I want. You might call me uterus, but I say it’s uterMe.” And then it puts on some aviator shades as a screaming YEOOOOOWWW echoes behind it.

If my dang body will just play along already, then we’re hoping for a transfer in a couple of weeks. Just in time for yet another December birthday in the family.

My niece is still living with us and that is going awesome. I have a whole lot I want to say about that, but I can’t do it today. Or maybe ever. Dang grown people with their own idea about what they want spread on the internet. It has been a big adjustment but a wonderful one. And maybe one of these days I’ll convince her to let me put her on the blog. She is so incredibly gorgeous and talented, and maybe the only person I’ve ever known who didn’t want to share that with the Internet.

There is still so much more to talk about. Atti’s new wheelchair and his big breakthroughs, my own big endeavors, my plans to make all my dreams come true, and how Force Awakens blew my mind. But I’m trying to learn to pace myself. I am still recovering after all.

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Christmas FAIL

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Show You Care

Happy love

This neverending fertility journey I’m on has been horrific. I got some more bad news this week, but I’ll get into that another day. Right now I’m deep into self-care mode with lots of puzzle doing, cat snuggling, and playing with Atti to get me through the hard stuff.

As I’ve been wading through all my tender feelings, it’s really hard to not sink into a place of desperation or loneliness. It’s really really easy to succumb to all the magical thinking that tells you there’s a reason you can’t have kids, and that it’s because there is something wrong with you. This infertility stuff, I tell you, it gets right down to the core of your identity and the love you have to give and long to receive.

But one beautiful bright spot in all this darkness is how people have shown up for me.

When I go through a hard time, I cocoon. I don’t leave the house, I don’t reach out for help, I hide in a safe space until I feel strong enough to re-engage with the world. Of course, this coping mechanism comes with some significant drawbacks. Namely, when the hard time is your own body and mind, a cocoon isn’t always a safe place. And often, hiding by yourself just intensifies the loneliness. But what is a person to do when they need support but don’t have the energy or courage to ask? You ask in whatever way you can bring yourself to. Sometimes that’s just squeaking out “help” to a trusted friend, sometimes it’s attending a meeting, sometimes it’s even vaguebooking.

Over the last few days the texts and PM’s and emails have been flying my way from all sides. Some who recognize what it means when I post about having a “bummer day” while in the midst of fertility treatments. Some responding to a more detailed call for help, and some just following an impulse inspired by whatever you want to call the human connection we all share. I call it God.

As I’ve been lost in the fog of my own problems, I’m constantly amazed at the goodness of people, putting aside their own problems to care about mine. To take the time to send a text while they’re racing around with all their own responsibilities. Who forgive me when I need to take some time to respond from the well I’m at the bottom of. Who never ignore that impulse to offer kindness.

When I’m more myself, I tend to wander through life with a big goofy grin on my face and my unmistakable cackle announcing my arrival. My laugh is something I’ve been self-conscious of forever – it is loud and omnipresent, but I know that if you ask people who love me what they love about me, my laugh comes to the top of the list. And even strangers have told me that my laugh cheered them up. How silly that something so small as a laugh is all it takes to spread a little joy. When something as untaxing as a high five can turn a day around. From my current vantage point under the covers, a text is hope. A friendly nod can overcome so much sorrow.

SoulPancake, home of Kitten Therapy and Kid President, has launched their latest viral campaign to put some goodness into the world by challenging people to show they care. This video totally made me cry at how beautiful the world is. From the high-fiving baby to the gentleman on the phone spelling out plainly exactly what the person on the other end meant to them, it’s a lovely reminder to step outside ourselves and our fear of rejection and prove how much love is in the world.

Because there is always more love than loneliness. And it takes so little to remind us of that. So do it today. #showyoucare

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Atti Update

Baclofen pump

Atti stayed home from school today. We’re all recovering from the flu, but that’s not really what did it. It was his screaming and tears when we tried to get him up and ready this morning. This is not the first time either. It only started a week and a half ago and he’s already begged and cried his way out of three days of school.

This actually doesn’t have anything to do with school. He loves riding the bus so much he cries when he gets home. He loves his teachers, he loves the routine, he loves learning, but ever since his surgery my anxious little guy has ramped up into a kid who never wants to leave the house.

We tempt him with movies or his favorite foods or trips to special places like the zoo. Bear even took him to a water park and he begged to go home after minutes. Even with a rash guard covering his belly.

When he’s at home he’s happy as can be. As I type he’s making up songs and playing with his Kindle at my feet. He needs a lot more assurance than pre-surgery, but since that basically just means more snuggles, I’m not mad at that. I just worry about my little guy and his relationship to the big wide world.

Shortly after I married Bear, I went through a period of agoraphobia. I would shake and cry at the thought of leaving the house. I failed my last semester of college, I lost a job, the thought of leaving that front door caused me physical pain. Now I know it’s all part of the OCD/anxiety broth my brain is stewing in, but the conditions I was living in – not having the tools to be open and vulnerable to my spouse without letting all the pain of the world overwhelm me – took my typical level of compulsion to a place that made sunshine seem dangerous.

I think that’s what’s going on with Atticus. He has had a major, major, change to his body. Imagine how self-conscious you feel when you’ve put on a little weight. Remember how it kept you from applying for a job, or reaching out to someone you wanted to know. Now compound that by medical necessity, disability, and the fact that there is a giant medical appliance jutting out from his tummy instead of just a little normal extra weight. This poor kid is already so different in so many ways, but he also knows how beautiful he is. This threatens that. This is another threat to his ability to fit in.

He will get used to it. It’s amazing what you can learn to accept. And we have all the right people involved. I’m just trying to be very carefully tuned in to him. Most days I would just tell him “Tough beans. You’re going to school.” But there are some days when that would make everything so much worse. Days like today when he just needs to feel safe and tackling the world comes after that. It would all be so much easier if he could speak fluently enough to go to therapy, or tell me how to help. But he doesn’t, so we’re both stumbling through trying to figure this all out together. All I know is that my first job is to make him know that he is loved. So back to the work of snuggling, and pushing, and eventually he’ll get through this.

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