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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More in Viral Adventures

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

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

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

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

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

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

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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 another day) and yadda yadda yadda didn’t get home until two days later then expected. Then my activism stuff kicked into high gear as my church issued a press release that was super super problematic around issues of abuse. Writing about that turned one eye of the internet towards me as I started getting hit with some ugliness that comes with attention.

But then. On the very same day I’m dealing with the underbelly of humanity by advocating around child abuse, Atti’s skate park video gets published on Upworthy and suddenly the other eye of the internet turns toward me. But this time with effusive love and support. This time I was hearing about how great we are and how amazing my little hero is and suddenly I feel like human beings are worth fighting for.

And then I started reading the comments to Atticus.

(I left out all the ones chastising us for not using a helmet because, Guess what folks? If your child can’t walk you don’t buy them a helmet. This was not a matter of being too lazy to put one on, this was a matter of not having reason to believe he would ever need one. We had no idea he would love this like he did. Plus he’s on five wheels, not two. He’s way more stable than a skateboard. He has a helmet now. Shush with your able bodied privilege.)

Atti is an EXTREMELY shy kid. Sometimes we’ve met people who know him from videos and he hides behind me or closes his eyes and covers his ears. But he is always wanting me to show him the videos I’ve made of him. There he can see himself as who he really is. And seeing how many people were watching that video? And cheering him on? Made such an amazing difference to him. He went to bed giggling. He was hugging and kissing me all night. I kept saying “Look at all these people who believe in you!” And as we put him to bed we went to read him stories, but last night? He read them to us. He gathered up his courage to try reading out loud. To risk sounding “funny” as he struggled to make the words with his mouth and to show us just what that sweet little brain could do. You all gave him faith in himself.

If you don’t have a disability, imagine the hardest thing you’ve ever had to do. Maybe it was a sport and you had a coach who really pushed you to do your best. Maybe you struggled with math or reading. Maybe your parents really wanted to play an instrument and you hated every second of it. Imagine whatever that thing is. Remember how discouraged you got? Remember how bad you felt about yourself? Maybe you even said “I’m so stupid!” when you got a bad grade. And how all those bad feelings about yourself kept you from trying. Maybe you gave up on that instrument. Or quit that sport. Or are still telling yourself “I just can’t do math.”

Now imagine that all of those feelings you have, instead of being around math or sports or the piano, was about talking. Imagine it was about walking. Imagine that every single human encounter you had required you to do a complicated math problem. That’s the world my Atticus lives in.

My job as his mom is to protect that sweet brave spirit. To make sure that he never gets discouraged enough to give up. I need to be his coach and tell him that Rome wasn’t built in a day and that It’s better to have tried and failed than never tried and that Winners never quit and quitters never win. All day long I’m trying to make up for how hard the whole rest of the world is by telling him how much I believe in him.

I wish you all could have seen his face when I told him that a million other people believe in him too.

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Farmer Atticus

Tomato Picking

Since losing my little dreamhouse on Courage Street back in 2010, we’ve been renters. In the last five years we’ve lived in three houses that were pretty great, all things considered. And because we’ve had such good luck I haven’t been in a rush to re-enter the market. Plus, to be honest, I wasn’t ready to love again. I am such a home body – like, a literal agoraphobe – and a home is such an important symbol to me of the roots I long to put down and the safe place I long to create, that losing my first home of my own left a mark on me. (And of course there was the whole destroyed credit and no down payment thing that comes with having a foreclosure on your record. Curse you financial meltdown!!)

Our current house is just ridiculously gorgeous and great for us. We have amazing neighbors, Atti can use his wheelchair to get anywhere in the house, and this backyard. I mean. But it’s not ours. And I’m feeling those hunger pains again.

We went looking at a property last week and it was PERFECT. I can’t stop thinking about it. But they were asking A LOT because there were three houses on the parcel, and yet they were all trailers. To do what we’d want to do we’d have to tear everything down and build again, which would be great, except for the land being way too expensive for that to make any sense. But this land. I dream about it. Views of the mountains on one side, the valley on the other. Acres of rolling hills only ten minutes from Bear’s work. If only.

It might take us a whole other year to really get what we want because as God is my witness I’m never moving again. Bear keeps wanting to play conservative because he doesn’t want to be house poor again, I keep saying I don’t care if we’re house poor for a few years if it means that I never have to pack another box in my life. And I have my heart set on lots and lots of land. In part because I have big plans for a group home for gay kids who can work the farm to prepare for their future and save for college, but also just for Atticus. This kid is an outdoor kid.

When you spend your whole childhood in physical and occupational therapy, you get what they call “therapized.” He’s so used to being bossed around, picked up and lifted into position, told to do simple tasks that have no context, and eventually he’s gotten rebellious. At therapy he pretends he can’t stand or take steps, but at home, if there is a box of Cheerios on the counter out of his reach, he can suddenly master his body in ways I can hardly believe. It’s a constant battle to provide a reward or context that makes enough sense to him to keep doing the work it takes to move his body. And these days, it’s really hard to teach a kid to work.

But! If we had a farm! For a kid who loves playing outside so much every piece of clothing that goes on his lower body is ripped up from dragging against the concrete, whose back is as bronzed as the face of a cowboy but with a belly as pale as a lizard’s, who has callouses on his knees and his toes from the unique way he travels, on a farm, he would work.

Last night I told him that I would take him outside to pick tomatoes with me and we could send them to school for his teachers. He got so excited he jumped on my belly and giggled and refused to go to sleep. First thing this morning I got him dressed in his outside clothes as we sang about Little Atticus had a Farm and all the animals he would have and the tomatoes he would grow with a pick pick here and a pick pick there. We went to my little backyard patch and Atti – who you have to bribe to eat anything not carb based – ate every tomato that hit the bottom of the bowl. And then got entranced by “the little green ones” and picked tomatoes until he counted to 100.

He told me that the first animal he wants to get is a goat. And then a chicken so he can eat the eggs for breakfast. I want to get him a donkey he can ride around or pull him in a wagon. If we had a little donkey, he could take it hiking. Seeing how the world could open up for him in these old fashioned ways, I get teary eyed just thinking about it.

So for now we’ll have to make do with little tomatoes and wrangling cats. Because I am not settling for another house. When I move again, it will be for our Dreamfarm.

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Atti Update

Baclofen pump

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

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

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

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

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

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

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

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Atti gets his Baclofen Pump

Kid in Hospital Bed
After a year stuck in red tape hell, we FINALLY got all the approvals necessary for my little guy to get his next surgery. I kept thinking of this one as a quicky on the road to the two major hip reconstructions we have coming up, but boy was I wrong. This one was HARD. And totally sucked. For all of us.

Atti had a Baclofen pump implanted in his abdomen. The pump is full of medicine and releases it directly into the spine, where it can bypass all the side effects of taking something orally. In this case, Baclofen is a muscle relaxant which, if you’ve ever taken a muscle relaxant you know, makes you stoned. Sleepy and silly and incoherent is no way to go through life. So by having this pump he gets all the medicine he needs but he still gets to keep his clarity.

I didn’t realize until our pre-op appointment that he was going to be in the hospital for a week. Or that he’d require at least two weeks of recovery at home afterward. With all of Atti’s surgeries he’s bounced right back almost even before we left the hospital. This one was different.

Dad and Sick Kid

This time, we couldn’t keep his pain under control. He’s so stoic that he never cried, he just writhed around in bed with the pain written all over his face. The worst was when he’d wake up in the middle of the night begging for help. I will hear that little voice in my nightmares until the end of time.

I stayed with him in the hospital the whole time, and since it was Shriners we were spoiled rotten. I got a roll out bed next to him so I didn’t have to sleep in pushed together chairs or a windowsill like I’ve had to in the past. There was a day room playing music he liked and a cafeteria with decent enough food. But still, it was the hardest time I’ve ever had as a parent of a kid with medical needs. This hurt him so bad. The pain has been intense and bewildering. And it’s hurt how he feels about himself. And there’s nothing I can do but hold him and love him and try to save my tears for the bathroom, or at least where it’s too dark for him to see.

We’ve been home now for a couple of weeks and Atti is crawling around like nothing happened to his little body. The spasms in his legs are way down, we can get his legs open enough to easily change diapers, I think this is going to make a massive massive difference for my little hero.

But we still have some healing to do. Both of us.

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Newsflash: In Vitro is hard!

Fertility Meds

Every time I think I’ve got the hard stuff of this year behind me and I’m ready to get back on the horse of regular life, the next thing comes along and knocks me flat again. We’re now at a year and a half of health garbage taking over my life – when it wasn’t outright threatening it – all with the hope of having another baby. This kid better be dang cute, that’s all I have to say. And, of course, it better exist.

I have gotten through the egg retrieval phase of IVF, which really really sucked. Like, bad. Over the years I’ve known hundreds of people who have done IVF and everyone said it was hard, but nobody really prepared me for exactly how hard it is. Granted, I am a medical marvel that will find every possible complication, but still. I had to put every single other thing in my life on the back burner and just do this. While Bear got Atti on the bus and raced home from work to pick him up, I laid on the couch watching old episodes of the Bachelor and moaning.

Every ounce of energy that wasn’t necessary for breathing was draining into my ovaries. I slept and slept and slept and I was still exhausted as my egg factories were kicked into hyperdrive, reacting to the oodles of medication I was taking every day. My belly was so swollen I looked like a waterbed, and I was covered from hip to belly button in giant bruises and puncture marks.

Since I’m one of those women who has pain during ovulation, and here I was hyper ovulating, it was not only exhausting, but PAINFUL. And even taking advil freaked me out, panicked I’d be causing harm to the eggs or risking the whole process. I used a heating pad to try and get a little relief but even then I was too worried about making hard boiled eggs to have it help much.

But all of that investment in energy paid off when we got news that there were over 30 eggs waiting to be retrieved. I went in for a quick procedure where they sedated me and then used a needle to aspirate up each of those little eggs. By the time I woke up they were already at the lab being joined by a sperm that had been individually chosen as the best candidate. I had visions of embryologists looking through their microscopes at a little sperm beauty pageant, the winner crowned and injected directly into the egg. Then we just had to wait and let nature take its course.

Of course, since I am, once again, a medical oddity, I had complications even from this little procedure. I had some bleeding that they couldn’t get stopped easily, which resulted in bleeding into my abdominal cavity. Apparently, I’ve learned the hard way, there is a major nerve that runs underneath the diaphragm and sends the impulse to move up and down to breathe. This nerve gets aggressively irritated by blood. So for nearly three weeks this nerve was driving me to distraction. The first night I felt like I was drowning, it felt like I couldn’t get my lungs to fill. Then as my body slowly, slowly, slowly absorbed the blood that was causing all the problems, I began to breathe easier, but I still had intense shooting nerve pain up into my shoulder. After a month of exhaustion making the eggs, I had another month of pain just trying to heal from getting them.

It was disheartening to watch the numbers go down at each stage of development – 30+ eggs retrieved, 16 fertilized, 12 grew to day 2, 8 made it to “blast stage” and on and on. I kept trying to remind myself that it didn’t matter how many embryos we had as long as we got a baby at the end, but it was terrifying to think of everything I’d put in to this process and know that it could all still go wrong at so many different points.

Just before we were ready to proceed to the implantation stage – where they put the embryos into my uterus and wait to see if a pregnancy is achieved – we got yet another twist thanks to my dang malfunctioning body. My hormone levels were out of whack and they felt it was best to wait before trying to get pregnant. So they took our little embryos and popped them in the freezer until I could get everything all cozy for them. I admit, I was crushed. This just felt one too far. After all the pain and exhaustion and sacrifice, to still not have it work out for us, I just about lost it. But once I could calm down and think it all through, I was kind of glad to have a little time to heal before launching into a pregnancy (knock on wood). This whole process has been so rough, it ended up being a good thing to be able to get myself back together before dealing with pregnancy symptoms on top of all the pain and exhaustion I’d just gotten through.

We’ve got four little embryos waiting for us in the freezer, and now we’re just waiting until I can dedicate another month to shots and daily office visits to see if all of this suffering of the last year and a half will prove fruitful. Hopefully August will be a lucky month. Hopefully those four little popsicle babies will actually make it into this world. And hopefully they’ll all be just like Atticus.

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Atti’s Introvert Friendly Birthday Party

Birthday Party
For Atti’s whole life, any mention of a birthday party was met with screams and tears. Even attending other kids birthday parties were too much for him to take as he was humiliated by proxy with all the attention on the birthday kid. Even hearing Happy Birthday in a restaurant was enough to send him into redfaced earcovered dripping wet tears. And for a kid as introverted as mine? A birthday party really would be torture. All that special attention is great for an extrovert, but with my guy being too shy to speak, I can’t imagine a greater hell than opening presents while everyone watched.

So we did things just the three of us. I’d make a special cake, or he’d pick out a special present, but it really couldn’t get lower key. Until this year. Atti finally said he wanted a birthday party. We were so shocked I kept asking him over and over again. “Really? A birthday party? Do you want your friends from school to come? And church friends? Really?” But he kept saying yes, so I jumped on the chance to go absolutely crazy.

And I did. Special invitations, so so so much food (that will be coming later this week), lots of decorations, but I also kept one eye on Atti the whole time, making sure that I had built in some safeguards for my gentle little boy.

So if you have an introverted kid, here’s some tips I’ve tested out for you.

Dance Party
Don’t make your child play host. I made a music playlist and had it going on the computer so as people arrived I’d hand the kids a balloon to blow up or play with (as age appropriate) and told them we were having a dance party. We built the chaos of those early minutes into the party so I never had to ask Atti to go and take a kid to play. We were all just playing from the moment they walked in the door.

Cow Kiss
Create a safe space. For our activity we rented a petting zoo (hashtag country living privilege) but the point of it was to have something Atti could hide in while the other kids could still be entertained. If things got too overwhelming – which they did – he could hang back and make friends with a special calf while all the other kids ran around the backyard doing whatever they wanted. In a pinch a safe space could be a bedroom, or even your lap, but it helps to have a place your child knows they can check in for a few deep breaths to ward off the big overwhelming feelings.

Alpaca
Hit the invitation sweet spot. It might seem counter intuitive, but if you’re not having a party with a couple close friends, than the answer is to throw a rager. We invited a LOT of people. And we told everyone to bring their siblings and parents. We basically had an open door policy. What you’re looking for is reaching peak crowd. If you have enough people that you can’t all sit around and talk in one large group? You did it right. A crowd allows people to break off into smaller groups, people can disappear for a minute if necessary, your child isn’t the source of entertainment, and they can hang back as much as they need in order to be comfortable without anyone being worried or changing the fun of the party.

Goat
Throw out the program. It was really important to me that if we were going to throw a party, I wasn’t going to neglect Atti to entertain a bunch of other kids. Free form activities allowed me to make sure Atti was having a special time, but if the other kids were bored with the dance party, they could play with stickers set out on the table. Or pet the animals, or go crazy in the backyard, or play in Atti’s room. There were enough adults around to make sure nothing got broken, but otherwise I encouraged the kids to just play and let go of any plans of moving orderly from one activity to the other. Any kind of an activity that came with an expert to take charge would be great too, as long as they were warned not to single out the birthday kid.

Calf
Have a buffet style spread. I made so much food for this party. Partly because it was so much fun for me, but also because I thought of the food as another activity that could provide a distraction as necessary. I spent plenty of time around the snack table as a teenager, and I hang with so many introverted internet types that I know the punch bowl is a perennial comfort zone. So keeping with the motive of not having to control or lead anything, I had all the food out on the table and made it up for grabs through the whole party. Including the birthday cake. We didn’t sing happy birthday, I didn’t walk in with lit candles, we just had it on the table and about halfway through the party I started cutting it up and putting it on plates.

Cowboy
Make One on One time. When a stressed out overstimulated introverted kid starts getting overwhelmed, the LAST thing they want is attention drawn to that fact. If you can make some activities that require one on one time, you can release some of that pressure without anybody being the wiser. For us it was taking turns on the pony rides, but it could be facepainting, or a turn on the trampoline, or special cupcake decorating time, anything that lets the kid chill out on their own for a minute.

Horseriding
Forget the presents. This will not only save your introvert some unwanted attention, but it will make you a hero among parents.
Buying presents for kids parties is the worst! Who knows what some kid at school wants? You’re left spending money you don’t want to spend on plastic crap the kid might not even want. Boo. Instead we took Atti shopping and let him pick out his own presents, and then we had a couple other things – like his Big Boy Bed – that were surprises. If your kid really really has their heart set on presents, then maybe you could stash them in a back room somewhere so you don’t have to open them while people are at the party.

Family
Throwing this party was a total dream come true for me. I’ve been waiting to go Pinterest crazy with a birthday party for Atti’s entire life! But one of my core values as a parent is not to make Atti’s childhood all about me. It has to be what he enjoys, in a way that he wants to celebrate, no matter how many adorable paper goods I’ve had to pass by. I think with this party we managed to make both of our dreams come true.

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Year of Pleasures – Love Note

Love Note

Atti has a lot of trouble with fine motor skills. Those darn fingers of his won’t listen to do much more than follow the pointer finger around. So a lot of the therapy he does involves art so he can practice working with little pieces and give those other fingers a job. He’s still obsessed with the alphabet, so his OT gives him a lot of foam stickers to work with – it’s something he cares enough about to keep at while he’s frustrated trying to get the backing off the sticky part.

I visited him the other day and his OT helped him cut out a heart shape with special scissors, then asked what they should spell. I admit, this was my suggestion, but Atti got all excited and spelled it out himself. He was so proud of what he made he could have busted wide open, and so was I.

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Atti’s Big Boy Bed

Big Boy Bed
The last month has been stuffed full of celebrations. So many that it’s going to take me weeks to share them all, which just feels heavenly. After the gauntlet of last year, this feels like full circle, surrounded with love and good news.

At least, bittersweet news. Atti turned 7 at the beginning of February. 7. Six felt like a big deal – going into first grade, looking so big – but with some of Atti’s delays I could still play at having my baby. Not anymore. He is big. He’s losing teeth all over the place, he’s got an adorable jack o’ lantern grin, he gets mad whenever I call him my baby, and he even changed the lyrics to one of our silly made up songs. He told me I can’t sing “he’s my sweetest little baby boy.” Now I have to sing “he’s my sweetest little super guy.” SUPER GUY! I mean, 1) How amazing is it that that’s the title he picked for himself, and then 2) MY BABY!! WAHHHHHHH!

New Bed
For this big boy birthday we figured it was time to give him a big boy present, so we hauled out the convertible crib/daybed/pile of rubble he’d been using his whole life and got him an actual twin bed. With a real mattress and not the plastic covered brick that babies need to sleep on since they’re too little for pillows. He is obsessed with it.

Every day he comes home from school and asks to play with his kindle in his bed. He sits in it and reads books, he leans over from it and plays with his cars on the floor. He jumps up and down so much that we have to readjust the rug every morning. There is so much victory in this moment. I keep thinking of him in the NICU, in his little isolette covered in wires, and I wish that I could go back and give myself a glimpse of this. That someday he’d be so healthy and happy and big. That despite all my fears for his future and his disability, I would still know what he needs, and even what he wants. I’d be able to communicate with him even without a lot of words and know that his deepest hearts desire is to be big, to grow up, to be independent, to be seen as his own little self. To be seen as the little super guy he knows he is.

I want him to be my baby forever, and he will be, but I never imagined how amazing it would be to get to be the mom of a superhero.

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