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I’ve got your Down syndrome Awareness RIGHT HERE.

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.

Down syndrome beauty

 

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.

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So it’s not just me then?

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:

(www.loadingartist.com click on image to see more great art!)
(www.loadingartist.com click on image to see more great art!)

That’s all I got. Love you guys.

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Desperate times.

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.

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People of Target for the Win.

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.

Abby at Target

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.

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In her silence, she is golden.

“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.

Her Silence Is Golden

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.

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Age Appropriate Social Skills, Nope. Ducks.

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…

badelynge of advice ducks

 

downloadI 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.

2620132107128

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.

 

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Resolve.

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.

Ellie in the sun from Disney-Pixar's Up

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.

Ellie and Carl

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.

 

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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.

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When I don’t write.

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.

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Home?

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.

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Getting good at starting over.

For the third time in 2 years we’re packing up to move across too many miles to a new home in a new location. When we left Port Orchard two years ago, I was ready. I didn’t want to tell people I was okay with leaving, as if doing so would say that I didn’t want to be around them. For the most part (oh my gosh those four words are so passive aggressive it hurts. Someone call me a whore.), that was completely false. I loved the Port Orchard friends, and I hated leaving knowing that the Navy would upset any hope at good friends being there when we got back. But I was ready. I had felt something more than our financial situation pulling us on the trip. I felt like I HAD to go, that things would change. Miracles would happen. I was ready. I was tired beyond anything I could ever write adequately in words, but ready.

Leaving Washington DC was different. I was sad to be leaving the school that had changed Casey’s world so completely. But I could not wait to get the heck out of there. I had never felt so displaced in my entire life. I went from being in a place where people could care less what you looked like (Think of your stereotypical Seattlite. Tell me you didn’t see someone just a little grungy?) to a place where looks, status, and all of that stuff MATTERED. No one there speaks sarcasm. It’s the only language I’m fluent in.

Today I faced leaving again. As with every prior move, every last inch of my body has ached from the stress of being too cheap to call movers or people to clean for me (Like I could afford that crap anyways). This morning it felt as though my insides were protesting in a way that my outsides longed to, but where entirely too fatigued to do on their own. They kicked, screamed and punched at me as I tried to swallow the bile that rose up sharply when I thought about something being the ‘last time’. My soul longs to settle. I just wish it was here.  I have felt at home here. The people here can come across a little harsh until you realize that it’s quite wonderful to just have people tell you like it is. To strip away pretense, to set fire to the fluff that surrounds too many conversations in other places I’ve been. While it sometimes sucks to have someone tell you ‘no’, I’d much rather have a straight ‘no’ than a wishy washy, I’m-going-to-begrudge-this-later ‘yes’. I love that people would confront me when I had screwed up so we could talk it out and then move on. There is no passive aggression here. It is what it is. I love that.

I picked Abby up from her preschool summer program and cranked up Foo Fighters and rolled the windows down as we pulled out of the parking lot. As I sung along, I was grateful for a passing moment for Abby’s hearing loss. I have a truly terrible voice. The words hung in the air, “Getting good at starting over…where do I begin?” There it was. In my effort to hold back the tears, I did that weird little breathing thing that forces all of the air out of your nose (You know the one, like when you’re in church and your husband leans over and uses the term ‘hard no’ to describe tupperware parties and you have to hold in your laughter and you make a weird little grunting noise through your nose? Is there a word for that thing? It happens to me a lot) and straight up snotted. With that awesome display of maturity, I pulled over and leaned my forehead against the steering wheel and began the first of today’s many ugly cries.  I thought about my friends. My kids’ friends. The hurricane. The snowy winter. The beach. I cried harder as the crappy New England drivers rushed by. I love their terrible driving!  I leaned back in my seat and used the closest Taco Bell napkin to wipe off my face and looked in the rear view mirror at my daughter.

My daughter.

It was her mounting medical bills that forced us to take the position in DC. It was my fear of ever going through that kind of financial desperation again that pushed us to take this position here in Rhode Island.  Her little life has forced me to grow in ways I have never imagined. For our entire family to grow. It wasn’t just me that has gotten good at starting over. In fact, I’m still quite terrible at it,. Better than before, but still sub-par. My boys are great at it. They have been such troopers through all of this. They are great at starting over, but it doesn’t lesson the pain we are all feeling at what we are leaving behind.

As I pulled back onto the road I glanced back as the wind began to blow on Abby’s face. The light from the open sun roof shined right on her, giving her an angelic quality that seemed to embody the way she feels when I hold her. She closed her eyes as tiny tendrils of hair danced across her face. A new, quieter, song gathered around us as we drove by the green pastures that welcomed us to the state just a year ago. The kicking and screaming of my insides slowed down to a manageable tantrum and I was able to allow a little bit of gratitude in.  Grateful for the chance to fall in love with this tiniest of states. Grateful for all of the hardships that forced us down a path we would have never taken on our own. A harder path. A better path. And grateful a little to be going home to a new soggy west coast home and the next round of life.

The moment of gratitude soon passed. I haven’t stopped whining since. Moving blows so much.

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Jinx.

My supertalent is eating my words. Which is super duper great because I have to eat my words all of the damn time. I have love handles from words eaten.

Last week I wrote a post about how awesome I am because my boys don’t whine. I clicked post and Karma was all “Ahahahahahah! She didn’t, did she?! Oh my gosh she did! GET HER!” Immediately my boys began to whine and have not stopped since.

I deserved that.

It’s tempting for me to see what else I can jinx. I talked to my Jinxism mentor, Greta the Amazing, the other night. I told her that I should say that I’m really awesome at being poor so I could get Jinxed and be rich. She’s very wise and came back with, “No. You would have to say “I’m so happy I’m poor.” Any word that indicates a positive emotion of peace and joy is your ticket. Especially when it comes to your children. In your sentence “I’m really great at being poor” will end up at you not being great at being poor. Thus, you will STILL be poor and completely suck at it. You’re welcome.”

I’m really happy I’m poor. I’m really happy I’m poor. I’m really happy I’m poor.

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Let my sons see your boobs!

My oldest was born 6 weeks premature. He was on a ventilator and then oxygen at first and spent the first few weeks of his life in intensive care. During that time, I pumped breastmilk the prescribed 8 times a day in preparation for when I’d be able to nurse. I marveled at this new thing my body could do. That I could provide all of the nourishment my son needed right there in my two, now freakishly enormous, breasts.  I hated pumping. I was excited for when he got home and I could just nurse him. Turns out, I hated nursing too. After about a month I just couldn’t do it anymore. When my second son was born, I gave it a try again thinking that I’d love it if I didn’t have a sick baby. I hated it even more. I really really loved bottle feeding my babies. I loved that Dad got to help. It was the right choice for me and my family.

Many didn’t and still don’t feel that way.  I had people CRY when I told them I had quit nursing. I had people tell me that formula was poison and later, someone even went so far as to imply that Casey’s autism was a result of the formula. Because that’s what every new mom needs, right? People to dump all over her for the choices she makes? This whole debate cuts both ways though. Every week it seems like I hear another horror story of a woman being told to cover up while she nurses or leave the establishment she’s in.  If I’m being honest, I’ve been one to say that women who are nursing in public should do it discreetly because I don’t want my boys to see THAT.  I was very wrong. Just as I needed support for my decision to not nurse, nursing mothers need support and acceptance of their choice TO nurse.

I didn’t want my boys to see someone’s boob, even if there was a baby’s head covering most of it. I thought it was wrong. It’s not wrong. Breasts are not bad. If I teach my boys that they are something only to be used for sexual purposes, that’s the only way they will see them.  If I can teach my children that it is natural, beautiful and necessary for women to feed their children this way, I hope that’s what they will come away with.

So I’m asking you, let my sons see your boobs. Okay, so maybe I’m being a little tongue in cheek here. I just never want a woman to feel badly about having to feed their child in front of my boys. I want this to be a normal, natural thing for them. They didn’t get that from me because I chose not to nurse.  Feeding your baby is a bonding time. Along with being held close they need to be able to LOOK at you and to hear your voice.  Mothers who choose to nurse should be celebrated for this, not discouraged.

In the end, what matters most to me is that women get the support they need and deserve in whatever choice they make that is best for their whole family.

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I need your help again.

Hi. This isn’t a real post. I wish I had more time to do this up right, but I don’t have time- because they don’t have time.

Last year while living in Virginia I got to meet two remarkable people. They were in the process of trying to adopt a child from Russia. The little girl’s name is Charolette and her parents could not wait to get her. Adopting from Europe is crazy expensive. It takes multiple trips to the country, and you have to spend varying amounts of time there.  Charlotte was in a great “baby house” (orphanage), but it wouldn’t have been long before she got transferred to an institution. You see, Charlotte has Down syndrome. In Russia and many other Eastern European countries children with Down syndrome are put up for adoption more often than not. These kids “age out” of the orphanages around five, and then are sent to live in adult mental institutions. Many of those institutions are lacking in medical care, adequate staffing and worse.  Much worse.

I don’t want to get into much more of that. It makes me hurt to even think about a child like Abby going through that.  Anyways, I met the Dirke’s after I posted about wanting to adopt a child with Down syndrome. A little girl named Elizabeth. She lives in Russia and I could not stop thinking about her.  I spoke with Kelly about this right before she went to get Charlotte. She came to find out that the gorgeous girl that I had dreamed about was in the very same baby house as her daughter.  It was nothing short of unbelievable. It was good to find out that Elizabeth was in good hands for the time being. We started to explore adopting her and quickly came to the conclusion for many reasons that it was just not something we could do. I was heartbroken.  A few weeks later after much stress and fundraising, the Dirke’s brought home Charlotte. When I first met her she was tiny and shy. Within a month she was a different kid completely. She’s going to school and loves cats as much as I do. The Dirke’s became a family with her adoption.

charlotte-and-mama-7-19-12

 

I told Kelly about how sad I was that we wouldn’t be able to adopt Elizabeth to which she replied, “Then I will.” They quickly made plans to go back to Russia and adopt not one but two more children.

Then that retched Vladamir Putin made that impossible.

We ALL were devastated. I cried hard for her, and still think about her a lot.

I can’t imagine the Dirke’s grief. I simply cannot fathom it. They were just months away from adding two more girls to their family.  I spoke with Kelly and we held out hope that the law would change.  The people of Russia flooded the streets in protest. But it was not to be. For now, all we can do is help with the efforts to educate the Russian people about children with disabilities. I have friends who go in and help reform the education system there and push for inclusion for children with special needs. Hopefully the right’s movement there will take hold as it has here. It’s up to the people of Russia now.

The Dirke’s were back to square one. With broken hearts, they realized that though they couldn’t get their girls in Russia, there were many more children waiting. They found Louisa, a baby born with Down Syndrome and living in Eastern Europe. They’ve been fundraising for a while now and leave to go meet her next week. I’ve been so out of touch with the world that I didn’t realize the time was coming so soon, nor did I know that they were at a loss for funds until today.

Today I came across this picture:

1002881_10201565283324254_1318904899_nI thought, “Oh my gosh that is a beautiful ring…” then I clicked on the image to see that it was my friend Kelly’s, along with this message:

“Six years ago, on my 24th birthday, my now husband knelt down in front of me and asked me to marry him. Ever since that night, I’ve proudly worn the ring that he picked out for me. It (and my wedding band) are the only pieces of jewelry that I wear.

And I hate to see it go.

But we’re up against a fundraising deadline. We leave in SEVEN days–we need funding in THREE so the money has time to transfer. Funding that we were anticipating has not come through for us.

It’s just jewelry. Louisa’s life is more important than a ring.

For every $20 donation you make to our FIG grant with Project Hopeful or our FSP with Reece’s Rainbow, you will receive one chance to win the ring. Sharing this post on FB or Twitter gives you a free chance to win. We need 500 donations of $20 to reach our fundraising goal.

Donation receipts can be emailed to ringforlouisa@gmail.com.

Our FIG fund with Project Hopeful: http://projecthopeful.org/matched-families-2/ (scroll all the way to the bottom to Louisa’s family)

Our FSP with Reece’s Rainbow: http://reecesrainbow.org/?s=Stori

You guys, she’s willing to give away her WEDDING RING to go get this girl.  She’s willing to give everything it takes to save this child’s life. And though she’d never in a million years say it, she’s a hero. She’s my hero. I didn’t choose to have two kids with special needs. She is. She’s choosing to take on children others would not. And she’s giving everything she has for the opportunity.

We can’t let her do that, can we? Can we show her that she can keep her wedding ring and fill the empty seat at her dinner table? Can we  help her bring home a baby sister for Charlotte? We can’t all go and adopt waiting children, but we can help the people who are. Please please help me. If you can’t donate,  you can still share. You can still pray, send good vibes, whatever you believe in for this family. For those of you who saw my status on my Facebook page and donated or shared already, thank you so much. I cried when I saw how many people had said they helped out.

To learn more about this family visit their blog: In Mama’s Heart

To see some adorable pictures of Charlotte taken by my friend Megan visit: My Stubborn Little Miss

*This is not a forum to call into question why they would choose to adopt internationally rather than from the US. All children deserve a home. Period.

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Home

In a few weeks we’ll have moved for the third time in two years, over 7,000 miles between the moves. As we’ve bounced around, I found myself fighting to make a home out of an impermanent placement. It’s been tough, but wonderful.  In these last two years of upheaval, I’ve found that home isn’t so much a physical place made of bricks and beams, but a feeling. I’ve found home in the most surprising of places.

I found that my home will always be first in my husband’s arms. There is no other place that I feel so at peace.

I found home in the giggle of my 3 year old daughter but also in the late nights spent watching her sleep, thankful for every rise and fall of her tiny chest.

I found home in a tiny beach cottage in Connecticut with people I had never met, but within minutes felt like kin.

I found home on the internet with a family of individuals who knew every last bit of me, and have still loved me just the same.

I found home in the contact with my Aussie friend, as she checked in on me, her intuition ALWAYS being right about me and my emotions.

I found home in books.

I found home in a crowded assembly room in the Rhode Island State Senate.

I found home stretched out on the beach in the sun as I watched my three boys throw themselves into the ocean with the same joy that I always have.

I found home under the waves in the warm Bahamanian waters.

I found home in my own house here, as fifteen children clambered loudly about me and four friends who I had met through the autism community. Four women who I have watched as they bravely face the challenges of raising kids on the spectrum, but do so with a smile on their face and joy and compassion in their being.

I found home in a beautiful library in Providence as I marveled at the diversity of experiences that surround being a mother.

I found home in early morning cuddles with Casey, late night talks with Carter and in the constant singing of Peyton.

I found home in a conference for adults with Down syndrome as they taught me to expect only wonderful things for my daughter.

And I found home as I have awkwardly plunked out clumsy words and feelings too deep to express on this blog. In the comments of support, of direction and of laughter. Thank you for sticking around with me through these last two years. This blog has grounded me in areas that I needed to take hold, and set me free in areas that were weighing me down. Thank you for your letters, your friendship and as always, for sharing. Thank you for helping me to see that I can do some good with this dumb blog, and for making me feel like the time I spend here typing out insides is worthwhile. Thank you for being my home.