My bishop in our new Rhode Island ward (congregation in Mormon-speak) accosted me in the foyer and asked if I had a minute to talk to him.  I nervously answered ‘yes’ and we walked back to his office. He sat on the edge of his desk and spoke kindly to me. “We have a calling for you…” I cut him off  “before you do…there’s something you should know.”

I waited for my anxiety level to rise, but it did not. I simply squared my shoulders and said, “I no longer believe.”  He leaned back, and crossed his arms over his chest. His eyes seemed to tear up a little as he gently asked me why.  I told him a little of my story. He asked questions and just listened. He didn’t judge. He just wanted to understand.  I told him that I wanted to attend because my husband still believes, but that I would not pretend to be something I am not.

I braced myself for what he’d say next. I had heard horror stories of bishop’s condemnation from people who will never set  foot back into the church.  Tears flowed as he said, “While I hope you will come back to a testimony of this church and of the Book of Mormon, I want you to know that we just want you here, no matter what. The church needs more people like you, people who think for themselves.”  Crying now too, I shook his hand and walked out.

What he did was invite me to stay in the church as I am. What he did was show compassion over condemnation. He could have given the apologetic responses I’ve heard for my issues, and we could have had a lively talk about church doctrine. We could have fought over feelings and history. He could have told me the things I had heard from others: “You’re under the influence of the devil.” “I feel so bad for you. Your family is going to pay for your choices. How could you do that to your family?” “You’d seriously give up the blessings of eternity over gay marriage?” and the like.  But that good bishop realized that those tactics do not work. Inflicting pain does not make a person want to stay in the place where the pain is felt.

This weekend was General Conference for the Church of Jesus Christ of Latter Day Saints. I still listen to all of the meetings. My husband believes, and I want him to feel that his beliefs are as welcome in our home as he has made my beliefs. Some of the talks given were beautiful and necessary. Some made me angry and sad to the point of tears. I wonder if the brethren know how much what they say does to the members who are on the edge or even members like me who are on the outside. Some talks were given with the same compassion as my bishop displayed that day. Some, while true to the doctrine the church believes, will push people away. It makes me sad.

Today, I’m most sad for the women who were turned away at the doors to the Priesthood Session of the conference. They are a group of faithful Mormon feminists who seek to have equal standing in the church as the men. Contrary to what was said in a certain talk, they do not seek to be just like men. They don’t seek sameness. They seek the ability to serve in positions equal to men. To have an equal voice. They want to do more in the church that they love. These women are better than me. I entertained the notion of agitating faithfully from within the church to change the things that I feel strongly about, but in the end, I could not do it. It was entirely too painful for me. These woman face that pain time and time again with great courage. They’re trying to stay in a gospel that they love and how they are treated in return will have an effect on their relationship with the gospel in the future.  I watched in real time as these women who had waiting in line for hours were pushed to the side so that the men in the line behind them could pass them and enter the meeting. Any man, whether a Priesthood holder or not, gained entrance to the meeting. And, unlike meetings specifically for women where men are allowed to attend, no woman was allowed in.  I watched as they each took their turn, one by one, and asked for entrance to the meeting. Each time being given a simple ‘no.’

What harm would it have done? Would letting these women in mean concession? No, it would have meant compassion. It would have been akin to my Rhode Island Bishop offering me a seat in the church just as I am and being grateful only that I was there. As these women walked away from a church building they were just one-by-one denied entry to,  a talk was being given inside…

 “So my brothers, it is your duty to reach out anyone who appears at the doors of your church buildings. Welcome them with gratitude and without prejudice.”

So…it’s October. It’s Down syndrome awareness month. Yeah, I know you think that happened in March, but that was just Down syndrome awareness DAY. I know people counted down to it the whole month, but still, October is our month. It’s also breast cancer awareness month, (I’m not capitalizing anything tonight, folks, because shifting sucks), it’s also bully awareness, cyber security awareness, and domestic violence awareness.

Which is interesting because it’s also Octoberfest.

I used to get in on the whole Down syndrome awareness shebang. It’s good stuff. There are great blogs to be read and much to learn. I just don’t have it in me right now. Maybe I will in a week or two, we’ll see. But for now, I’m not all that in love with Down syndrome.

{GASP! Did I just say that?! Yup.}

I feel like in the Down syndrome communities and elsewhere, that we constrain ourselves to only project a beauty, a joy, a love of all things Down syndrome. In our fight for acceptance, I feel like we’ve pushed the pendulum too far the other way. We’ve only spoken about how great Down syndrome is, and how great our kids are, and then get mad when people imply that our kids are all angels. We’ve perpetuated that myth and many others. The truth is, it’s not all fun and games. In fact, it’s really REALLY hard. I have a hard time feeling like I can only speak of Down syndrome in the brightest of lights. I have a hard time when people think I don’t love my daughter as much as my other kids, or as much as they love their child with Down syndrome, because I say it’s hard from time to time. Sugarcoating disability doesn’t help Abby get the services she needs. It doesn’t help people understand that she’s an individual with her own likes, loves, hates and rage.  And it certainly doesn’t help me come to terms with the reality that we’re faced with.

 

My reality with Abby’s Down syndrome is very different than the realities of other families with the same diagnosis.

I’m in no way saying that people who write positively about Down syndrome are lying or sugarcoating.  I’m saying that if I only wrote glowing reviews of that third chromosome, I would be leaving out the substance of our day to day lives.  I would be whitewashing the truth.

The truth is, having a child (or two) with a disability is hard. I can say that and know that it doesn’t negate for a second how much I love my children. I’d do it all again. In a heartbeat (that still has the most adorable murmur). Abby has taught me a new form of happiness. She’s brought a richness to my life- both in the good and the hard times. I hope to one day be like my friend, Holly. Her status today was this: “I haven’t said anything for Down Syndrome Awareness Month, because I have nothing to say. Brooke is just another member of our family who happens to need extra help on her life journey…we wouldn’t change her for the world.” That to me, is acceptance.

I’m super sensitive these days. Pretty damn depressed, too. It’s a shitty combination. It makes me yelly. And offendy.  This whole government shut down thing only makes me hate. There are too many people who can’t see past the noses on their own faces. Who think that because this government shutdown doesn’t hurt them (right now) it’s not that big of a deal. That it’s good that they don’t have to put up with Obamacare (a bill most have just decided they hated without even knowing what is really in it) and whatever means it takes to get rid of it are necessary.

That it’s totally okay for families like mine to take the brunt of this political charade.

That makes me hate.

But from what I’ve been reading on the internets today, I’m not the only one. Seems like we’re all going through something right now. Not just these shutdowns, or autism, or Down syndrome (oh my gosh you guys, it’s Down syndrome awareness month! YAY! grumble grumble grumble) but that there’s a major FUNK settling over us. And unfunking ourselves is not easily done.  So why not embrace it? I found this yesterday:

That’s all I got. Love you guys.

I took a long walk after dropping the kids off at school today. I looked at houses in my neighborhood and coveted. I thought about how great it would be if I could get a job and make enough money for us to afford a mortgage that would allow us to stay in the same school boundaries, hell, in the same school district. I thought about how nice it would be to have a house that wasn’t so crowded. Maybe one with a garage big enough to hold my car and a laundry room that I could walk into.

I got home and turned on my computer and checked the news. The government is shut down. My husband is a Department of Defense Employee. His project has funds to last a little while, but not long. A week or so at the most. The furloughs over the summer along with the expenses of the move, our medical expenses at the children’s hospital in Rhode Island I had worked so hard to get help with, and some just shitty issues we’re having now have chewed away our savings.  I’m not longer thinking about a bigger house with a normal sized garage. I’m thinking about survival.

I could go on and on about how mad I am at the Senate. How completely jacked up it is that they would let the whole country go to hell over Obamacare, but it doesn’t change anything. They weren’t thinking about people like me. People who cannot contribute to their campaigns because all of our money goes to pay for our kids’ care. They were doing what would make their donors and their party pat them on the backs. I want to change things. But I don’t have the time or the energy to.

I am depressed and I’m scared. We already live very frugally. I buy all of our clothes at Goodwill. We furnished our house from Craigslist. My car is 11 years old, and Lance’s car is worth less than Abby’s hearing aids. We’ve moved three times in the last two and a half  years to pay off our debts and to build savings. Just like that, all of the frugality, all of the moves, all of our savings. They see it as politics. I see it as shooting the hostages.

I’ve been wracking my brain for ways to earn an income.  I can’t work outside of the home because of Abby’s health issues and because I have to be able to drop everything at a moment’s notice for Casey. But I can work from home. I can write. You guys can see that, right? I can edit.  If you know of anyone that needs writers or content editors, please let me know. Shoot, if you know anyone that can use anything where I can work from home, please PLEASE let me know.

I’m also selling ad space. If you’re looking for a cheap way to have thousands of people see your ad for your etsy shop, your blog, whatever, let me know. The tab above that says “PR Welcome” has details, too.

In the coming days I will open an etsy shop. I make jewelry that is pretty damn cute. I’d wear it myself, but I’m not that kind of girl. Which is hilarious because of how much I love to make it. When I can get the right part for my vinyl machine, I’ll sell that crap too.

That’s all I got. Hug a government employee today. Or their wives.

I wrote about this on my facebook page the other day, but I thought I’d write out the whole story.

Things have been, eh, busy for us lately. Friday I spent the entire morning working on Abby’s medical crap so she could start school on Monday.  I went back and forth to the school, to her doctor’s, the pharmacy, etc. The Special Ed office in Rhode Island has yet to send Abby’s records (good thing I brought a copy of her IEP), and so all of the medical releases and the medical plan I had done there had to be redone here. That included getting her new prescriptions for her breathing meds because I couldn’t just send an inhaler, it has to actually be in the box with her name and prescription information on it.

Abby goes everywhere with me. It wreaks HAVOC on my body. She’s between being able to ride in a cart in stores that have them and being able to walk on her own without running away at every turn. Almost everywhere we go, I end up carrying her a lot of the time. We’re trying to encourage her to walk more, but her body tires out pretty quickly into it, too.  So after just a couple of hours running errands, I really start to feel it in my back and hips.  By the time we’d gotten to Target on Friday, I was in quite a bit of pain.  I forced Abby into the cart as she screamed in protest. I was tired and on the verge of tears. As I worked through the isles, I picked up a large container of cheese balls, which are Peyton’s absolute favorite treat. I never get them as I really really like not having a house covered in orange fingerprints.  But Peyton has been super good in spite of getting any attention for the last month, so I figured I’d surprise him with it. As soon as the can of orange death went into the cart, Abby FREAKED out.  She turned her body as far as she could go and grabbed the container.  She tried everything she could to get into it, eventually straight up gnawing at the corner of it. The yelling persisted.  Fully beaten down, I opened the container and shoved a handful into her tiny hands, and then threw the container back into the cart. Abby quickly started turning orange, and then figured that she could reach back into the cart, untwist the cap, and grab herself more. I didn’t stop her. I just wanted to get out of there and this was keeping her in the cart and calm.

In my fatigue, I almost willed someone to say something to me. I was so far at the end of the rope, that I knew I’d freak the hell out the minute someone said something like, “Well, I’d never feed that kind of poison to my child!”   I waited and worried as I worked to finish off my list. It didn’t happen. In fact, people were SO awesome about it. One employee came by and smiled and played with Abby and said, “You do what you gotta.” when they saw the open container of unpaid for cheese balls. Two women smiled as they walked by, the younger said, “She’s too cute, I couldn’t say ‘no’ to her either!”  Another lady asked me how old she was and said, “I just love that age…except at the store…the cheese balls are a good idea.”  When we got through the checkout, the lid to the cheese balls came off as the lady went to scan them. A bunch of cheese balls flew out. I apologized as I tried to clean up the mess and wrestle with Abby at the same time. The checkout lady helped me, all the while telling me how she understood the need to just get through the store, and that she was happy to help.

The tears that I had held back in my exhaustion earlier came as I trudged out of the store. This time though they came because people were nice. People didn’t judge me. They weren’t condescending. They were kind. They didn’t have to go too far out of their way, all they had to do was smile and nod. A quick sentence of understanding.  They had no idea how tired I was, or how hard these last couple of months have been. They didn’t know how much I needed their kindness, or how their simple actions would leave me crying in the parking lot, filled with gratitude for the goodness of people.

“Is there anything else the preschool teacher needs to be aware of?” I was on the phone with the Special Education director for preschools in our district. We’d been over Abby’s hearing and health, and are planning on her starting at the school this week. Hopefully. “Uhm, yes. I’m actually sitting in the parking lot of her pediatrician’s office. We just had another appointment. We think Abby might have autism too.”

Nailed it.

I congratulated myself for making it through that sentence without so much as my voice catching.  I did not cry. I stated it as it is: we don’t know, but probably.

“Are you okay?” Damn you. This question caught me off guard. My voice trembled as I began to watch my clinical matter-of-factness crumble. “Do I need to be? I mean…yes… I mean…no. No I’m not. I’m not okay with this. But I will be. Give me six or seven years…”   I think I took her back by being honest. By not spouting out the first platitude that came to me. I took myself back, too.

I feel like I shouldn’t be talking about this, that I shouldn’t be sad about this, that I shouldn’t even so much as be processing this until the diagnosis is written on the paper. I feel like I should suspend all of that ache until we have some concrete answers. It makes sense, right? I mean, there’s still the possibility that all of her ‘red flags’ can be explained away with something else.  I hope so. But I don’t think so.  Even if they are, we’re still dealing with the reality that my three year old is pretty much silent. She makes very little sounds.  My husband and I remarked once how we were jealous of our friend’s five month old baby. She babbled. She responded to talking with coos. Abby is like a portrait. As beautiful as anything I’ve ever seen, but silent. A world of wonder hidden under seemingly perfect brush strokes. We hear her voice the most when she cries. It’s the cutest little voice. It has the same tonal quality of her father’s, but expressed through the vocal chords of a little girl.  I long to hear that voice say “Mom” or even yell at me in protest. I ache to hear her say anything at all.

Maybe she will one day. Maybe she won’t. Either way, the process of understanding has started, and my grief is there no matter how I try to talk myself out of it. It’s preparatory.  We found out my father was going to pass away 8 weeks before he finally did. Those eight weeks felt as though we were suspended in our grief, that we couldn’t mourn the living. I did though. I cried myself to sleep a lot and tried to take in everything that I was seeing so my thirteen year old brain wouldn’t forget. When he did pass, it was hard. It was very hard. But nowhere near as hard as it would have been had we all not spent the prior two months processing. It didn’t have to come all at once.  It’s kind of like I’m doing now. Maybe she won’t be diagnosed with autism, maybe we’re dealing with something else entirely. Maybe it’s just the Down syndrome. Or maybe she’ll just give up the mime-act and start talking out of nowhere. At the very least, when I get to the point of knowing, I will be okay. I will have done the work beforehand to manage the weight of the day.

Or maybe I won’t be okay. That’s fine, too. It’s like I’ve said to countless other people but refuse to allow for myself: whatever you’re feeling is okay. It’s right. There is no right or wrong way to get through this. Allow yourself to feel it.

So I am. Is it dark and heavy all of the time? Of course not. I mean, have you seen Abby? She doesn’t give you a lot of space to be super sad. In her silence, she is golden. Her smile and a tap on her chin that means I will spend the next half hour singing songs while she mimes the actions. Her giggle that reminds me that her voice is in there. And the feelings that come when she’s in my arms- that even as a writer I am at a loss for words to describe. Sometimes, words just are inadequate.

Most of the time, really.

I got the greatest email the other day. In it, a lady told me of being at a park and seeing a teenager with Down syndrome run up to an especially obnoxious badelynge of ducks (I just found that word, it’s the correct word for a group of ducks on the ground. If you get nothing from my blog today, you have at the very least, learned a really cool new word) screamed “QUACK!!!” and then gave the ducks the bird.  Yes, folks, he flipped them off.

I laughed and laughed. That’s kind of what teenagers do, right?

So I was going to go on here about how sometimes the very things we don’t want our kids to be doing are the very things that they’re typical peers are doing but uh…. I found a ducks giving advice and well…

 

I didn’t say it was going to be good advice. Actually, this meme’s name is Malicious Mallard. You can google it. There’s a good advice duck, too. But that seems a bit shady as well.

I have so much more I want to say to you all, but I have now found a whole set of pictures of famous people and even Disney Princesses that have Nicolas Cage’s face on them. I MEAN I HAVE TO GO BE A PRODUCTIVE MEMBER OF SOCIETY.

 

The movie “Up” by Disney-Pixar tells the sweetest love story in just a couple of minutes. You watch this couple fall in love, get married, build a house, and then contemplate having children. You see them build a nursery and then in a doctor’s office, where Ellie is sobbing. It’s unclear whether or not she miscarried or if she was just told that they can’t have babies, but that is besides the point. The feeling is very clear. Her plan for her life has taken a sharp detour.  Then, in just mere seconds, a scene rolls by that has stuck with me since I first saw the movie.  In the next scene, you see Carl looking from a window down on his wife.

I’ve come back to this image in my mind a lot over the years. Right now, it’s the wallpaper on my phone. I love it so much because, to me, it’s a embodies one word: Resolve. Ellie, as she’s processing this life changing news, has stopped crying and started to cope. It doesn’t mean that  the tears won’t surface in time, and probably in the most random of places, but it does mean that she’s working on being okay. She’s building a resolve from within her. It doesn’t come all at once, but it comes. It doesn’t stay all of the time, but it’s there. The resolve.

The resolve to just make it through the day. To be okay with yourself and to work on being okay with your situation.

The resolve to find happiness and laughter even on the darkest of days.

The resolve to understand that sometimes the hardest of circumstances are what make us who we are, and can work to make us better. They encourage growth in a way that a life without soul-crushing pain will never build on it’s own.

The resolve to be a little better than you were yesterday, but to understand that life is a dance, and sometimes it’s more one step forward and three steps back.

The resolve to use hardships to better understand other people and the trials they face. Then use that understanding to serve.

The resolve that when life gets too hard to take, to go back there, to your place in the sun, and be quiet and wait.

The resolve to live life to the fullest- and that doesn’t mean only happy fluffy moments. It means feeling the depth of all emotions, both wonderful and hard. It’s a life less ordinary, but completely filled to the brim with experience.

Next in the film comes a moment I am too quick to forget. Carl comes down and kneels in front of his wife, and comforts her. I think about my husband. Last week he spent much time just holding me as I sobbed about Abby’s possible autism and then as I wailed after hearing the news about Kelli and Issy. He is strength to me.  Carl then places their adventure book on her lap and they begin a new adventure.  Lance did the same. For now, it’s a buying a home that is in need of some serious repair. It’s his encouragement for me to continue with my book. It’s his helping me to look for the adventure in every single day.

Life gets in the way of their plans to travel to Paradise Falls, but in the end, it was a better life than they could have planned.  And so far, the same is true of my own life. I did not plan it at all this way, and I’m glad. It’s better. It’s so much harder and it continues to force me out into the sun- to a place where I close my eyes and just breathe. Where I learn to build a little more resolve then I did the day before. I’m grateful for that.

 

They are going to vilify her.

I would have vilified her.

In the same way I vilified the mother of Alex Spourdalakis just a couple of months ago.

They are going to vilify my friend.

My friend who is now in the hospital after doing something so unthinkable that I feel like the whole world just crumbled beneath me.  She tried to kill her autistic daughter and herself.

There was a space between me and the mother of Alex. A space where I could believe that she was crazy. That she was evil. That she was a monster.

There is no space between me and Kelli. After speaking to her on the phone for hours one night several months ago I told my husband that the only difference between her daughter (who she had been fighting to stay in an autism residential treatment program) and my son was that the meds worked for my son’s aggression. That is all.

How does it get to this? Kelli is a fighter. She stopped at nothing to do what was right for her daughter. She fought. She fought. She fought. When did she stop fighting? How did it get to this point? Kelli is not an evil person. She’s not. How did it get so far? What do we do now to make sure that this never happens again for any of us? How do any of us know that we’re safe from that road? Something needs to happen. Parents need a safety net. WE NEED HELP.

The space between the good parents and the monsters is gone. This is too close.

What fragile strands of resolve I had left after spending the day coming to terms with Abby’s autism are frayed beyond words now.

My friend. My friend did this.

I could be wrong. What if I’m wrong? And worse, so much worse, what if they tell me I’m wrong?

I hear these words scream at me as I contemplate writing everything I feel in every moment. They are the words that stop my fingers from pounding out the keys on blog posts that I want to share, but am too afraid. Somewhere along the lines, I began to tell myself that I had to be right to write. I had to know my subject completely and it had to be free from error, even down to the punctuation. Those words I came to believe have stopped me from just telling the story- especially as it happens- for fear that in the future, or even in the present, someone is going to use my words against me. To prove that I was wrong. That I am wrong.

What happened to being wrong? When did it turn into something that was essential for development? When did I suppose that I needed to have the right answers even before the questions came? We all live life in the present. We all make mistakes. I make so many mistakes. I’ve made so many important decisions based on my “gut” emotion or faulty information. That’s life. That’s how we learn and grow. I hope I’m learning. I read what I wrote even a year ago and I roll my eyes at the idiocy. It’s easy to look back. It’s hard to know right now.

That being said, there are some of you who read this nonsense who are light years ahead of me in your development as a human. You roll your eyes at me and how little I understand. Which is so totally fine with me now. I’m learning. I’m not who I was even a year ago, and I don’t expect to be the same person in a year. That’s the magic of growing up.  Life would be boring for me if I knew everything from the beginning. It’s the journey.

So I’m going to write what I’m feeling in the present and I assure you, I will be wrong. I might be right. Either way, I’m desperate to get back to why I started this blog in the beginning- to write. To get it out on paper what I’m going through. When nobody read what I wrote, I didn’t give a damn. I want to not give a damn again. Maybe that kind of writing will take me back to not having anyone read, but my bottom line won’t change. I’ll still be the girl who’s just trying to make sense of the complete and utter nonsense that is her life.

I’m going to write.

We did it. We drove five hundred million miles and are in this new place I think we’ll be calling home.

I think.

It’s getting hard to feel like we will ever be settled. Lance did a great job picking out the house. It will… work… for now. Anything was going to be an adjustment after living in a fantasy land in a gigantic home on it’s own acre of land. In this house, well, I could jump from my rooftop to the neighbor’s without much effort. I might try it.

I will write about our whole trip. The fun we had. Add pictures and all of that stuff. For now though, I’m just checking in. I’m a crazy mix of emotions. Mostly just tired. We stopped by our old Port Orchard neighborhood yesterday and saw most of our neighbors. That was SO HARD. I didn’t realize how much it was going to suck to not go HOME to our house, our friends, etc. It’s like starting all over again. Casey cried and said, “It’s just like the good ol’ days!” And then we all cried.

For now, I have a ton of boxes that need to be unpacked and nowhere to put anything because we gave away most of our furniture before we moved. We cleaned out part of our storage shed here that held all of the stuff we didn’t want to take us on our original trip to DC. Holy hell I kept some stupid stuff. Seriously. Boxes and boxes of ugly dumb stuff I will eventually just hide in our crawl space here…which actually is HUGE. That’s exciting to me. A veritable graveyard of projects that I will never finish. Like a warped time capsule museum type thing. I will name it “ADHD.”

I still have no cat.

I miss you guys.

That is all.