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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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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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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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 […]

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More in Viral Adventures

Atti and Dad

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 […]

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Atti Goes Viral

Snuggly Atticus

The last couple of days have been wild, but I think that I should really just start accepting that as understood when I start writing my posts. I just don’t seem to run optimally unless I’m surrounded by chaos. I took what was supposed to be a super quick road trip (bookmark that story for […]

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BB8 Sugar Cookies

BB8 Cookies 1

Over my Christmas break, aside from the surgery and recovery, the family time and holidays, two other important things happened. 1) While laid up in bed trying not to cough or laugh, I got totally hooked on watching Youtube videos about decorating sugar cookies with royal icing. 2) I saw Force Awakens. I think I […]

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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 […]

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Christmas FAIL

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