5 years old

Dapper

5 years old. 5 of them. 5 entire years.

I’ve been struggling all day to come up with something to say to mark the occasion, and I’m coming up completely blank. How have there been five years with this little guy? I’m still calling him a toddler!

I know every good parent thinks their child hung the moon, but I think mine might just have done it. We’ve got it bad for this kid. Jaws dropped, gasping, hands clasped, bad for this kid. He’ll be playing with his toys and we’ll be on the couch just watching him, marveling, until one of us says, “isn’t he the best kid?” We’re constantly amazed at how his little mind works, his tender little heart, his musical talent, his crazy smart brain, and his world flattening will.

That will is both his greatest blessing and his greatest curse. It’s that will that keeps him working and working and working to climb onto the couch, pushing himself onto his knees, stretching to grab on to the cushion, pushing up on his toes to try and stand, balancing precariously while he hoists himself up with his arms, pulling his torso further up until he can use the couch as a fulcrum to tip his uncooperative legs up behind him. I never had any idea how much physicality is required to exist in the world until I became his mom, and now every day I watch as he overcomes pain and isolation and biology to do things that rarely even merit a mention in the life of another kid. He is my hero.

But that will also makes him pretty dang uncooperative sometimes. When something is his idea, there is no force on earth that can stop him from doing it. But when it’s not his idea, there is no force on earth that can make him. As we start thinking about kindergarten, the big thing that would hold him back is his ability to follow directions. His speech therapists have begged and bribed him to say one little “b” word, but he just put his head down on his desk until it was time for them to leave. I never wanted to use discipline when it came to something that might be affected by his disability, but knowing what a smart little kid I have and what is at stake if he didn’t cooperate, I started laying the hammer down. Overnight he went from not being willing to say ‘hello’ to saying ‘Can I have a cookie, please?’ He’s such a little stinker and when I’m ready to wring his neck I have to sit back and remind myself that it’s that stubborn will that is going to get him walking. Walking, and through school, and on to college and an independent life. Nothing will stop him.

Having a kid like this, a kid faced with so many challenges and who so stubbornly attacks them, changes you totally. Being even a mediocre parent to a kid like this earns you shame. A kid like this requires you to rise up and meet him. And because of that, my experience in motherhood hasn’t at all been what I’ve expected. I feel far more proud of my efforts than guilt about what is left to be done. I don’t find the drudgery in motherhood to be a problem, because I’ve seen that drudgery is how great things happen. You push and you stretch and you stand and you balance and you pull and it all looks like a lot of effort for naught, but that’s what it takes to accomplish even the smallest tasks.

Laundry is never ending and the floor is always dirty and there is always some person you are neglecting or deadline you are missing, but all of those tasks add up to create something pretty damn powerful – nurturing. Most of us take for granted how many muscles have to cooperate and obey for us to stand up and walk to the kitchen. But Atti doesn’t. And I don’t. And most of us take for granted how many little attentions have to be paid to nurture a child, a relationship, an environment, but I don’t. Not anymore.

Atti has shown me how to see all the little dots in between where I am and where I want to be. So every day I move forward a couple of dots at a time and I don’t feel guilty for not being at the end yet, I keep my eye on where I’m headed and the life I want to create for my family and I keep moving. And that means that I’m going to be the mom that Atti needs and push and pull and balance and fight to help him make his way.

This kid of mine got that world flattening will from me.

Head Injuries! Wheeee!

Big Boy

Just when I was starting to feel like I was getting my feet back underneath me, I had to drop everything and run to the ER for a cat scan for Atticus. With all my time in the hospital, this was actually my first time as a parent in the ER. That’s a little silver lining in the disability. No accidents when you can’t run around! Or so I would have thought.

Atti was sitting on the bed in our guest room, jabbering and singing with me while I typed, and as we played the front door opened and in walked Bear. Atti got so excited he forgot himself, lost his balance, and plummeted off the bed and onto the edge of the bookshelf. He didn’t bleed, he didn’t throw up or lose consciousness or any of the other scary things that happen with a bonk on the noggin, so we just tried to calm him down and make him feel better while we tried not to laugh. A pissed off four year old is hilarious, especially when he’s blaming his dad for the fall. In between screams Atti would literally shake his fists and say “Oh daddy! Daddy! :unintelligible grumbles: Daddy!” and then to make certain we were getting his point he did a pitch perfect impression of me saying “JARE-ed! JARE-ed!” as he rubbed his head. If his dad hadn’t come home and gotten him all excited, Atti never would have fallen off the bed! Dang daddies.

Other than totally pissed off, Atti seemed fine and didn’t even complain the rest of the night. It wasn’t until nearly a full week later that I was combing his hair and felt a softness. It was so subtle I had to stop and ask myself if it was always there. I told the nervous mother in my head to chill out, but the next morning it was worse so I freaked out and took appropriate steps to get him treated.

One of those steps was getting Bear to come home from work. All I had to do was say ER and there was a Bear shaped cloud of dust left behind his desk. I might have freaked out, but he FAH-REAKED out, and like all good partnerships we recognize that when one of us is FAH-REAKING, the other has to rally and hold things together. I talked to doctors and filled out paperwork and kept Atti calm while Bear just tried to keep from clasping Atti to his chest and sprinting into the sunset.

But then it was time for the cat scan. And I just happened to be in that window of my cycle when if the odds are ever going to work out for us to have another baby, I had to take some precautions. Precautions that turned out to be unnecessary since I’m yet again not pregnant, but that’s another load of crazy making for another day. Bear had to go in without me and keep Atti still while he faced down a giant robot. And since we have a good partnership he switched off the freak out switch and came through like a champ while I was in the other room taking my turn to freak.

Head injuries are so dramatic. They’re like the teenage girls of injuries. Atti turned out to be just fine. The swelling is a hematoma which is just a little bleed in between the skull and the skin of the head. It’s totally nothing, but with a head injury, and a head injury of a disabled boy with brittler than average bones, you don’t mess around. It all just makes me very very grateful that we don’t have to do this regularly. Next time I see a mom with a really active boy I’m going to cock my head to the side, furrow my brow, put a gentle hand on her arm and say, “I just don’t know how you do it. You must be so strong.”

Hospital Food

Hospital Food

I spent today back in the hospital with Atticus, but this was a relatively easy one. As these things go anyway. Any time you have to see your child sedated it’s far from easy.

This time he just had to get an MRI. No cutting, no pain, and no overnight stay. All great things. He’s got another surgery on the horizon (more on that another day) and this was just in preparation so the surgeon knows what they’ll be dealing with once they go in there.

But still I don’t think anybody would choose a day in the hospital if they had somewhere else to be.

My little guy has had more than his share of hospital visits, and I worry he’s going to develop a huge anxiety complex, but he only seems to get braver. Today he started breathing hard once they pulled out the blood pressure cuff, but he just gripped my hand and soldiered through. They took his arm to start the IV and he knew exactly what was coming, pulling his arm away and rolling into a ball. I stroked his hair and explained what was going to happen, that it was going to hurt but only for a minute, and in a little while he would go to sleep. So he gripped my hand harder, let out a little whimper as the needle went in, and then took a big breath and went back to playing with my iphone.

He is so much calmer about these things than I am. He faded off to sleep while I tried to force some bad hospital food down my throat and tried not to pace too much knowing that he just had to sleep while inside a big tube. When they called me back to the recovery room they told me that they had to give him a lot more anesthesia than they expected. When he’s sleeping his spasticity really becomes obvious and they had to get him good and under before his legs stopped twitching. He was only getting a little more rest, but there is little in this world that freaks me out more than seeing him anesthetized. His limp little body and immobile sleep is the stuff of my nightmares.

His big surgery promises some pretty amazing developments, but also a lot of hard work. I have to work on getting over those nightmares.

Play date guilt

Atti on his own

I hardly ever do play dates. Like, Atti’s maybe had five in his whole life. And I often carry a large amount of guilt over that. I feel like I should be a mom that’s more fun, that I should be more proactive about making him make friends, that I should be teaching him how to socialize. So then I plan a play date, it’s kind of a disaster, and I remember why I don’t do them more often.

On Friday we met a little girl from Atti’s class and her mom at a pumpkin patch. The two of them were delightful and adorable and when I’m courageous enough to do another play date, they’ll totally be the ones I call. The little girl has Down’s Syndrome and doesn’t talk much yet, but she loves to talk to Atticus. Meanwhile, Atti doesn’t talk much but he’ll spell her name out to the tune of B-I-N-G-O. They are so adorable together, and being able to spend time with another mom of a special needs kid is like balm for my soul. Just being able to look at someone and know they have all the same fears and hopes and stresses that you do? A gift.

When I imagine a play date in my head, I see a couple of cute moms, chatting on a bench, relaxing with a coffee or something, while their kids play without them. I imagine a break, a little adult conversation, a chance for the kids to play without total supervision. Yeah, that’s not how it works for me.

Since 4 year olds don’t really tend to sit down and discuss current events, the mobility thing becomes an issue in a hurry. Atti’s little friend wanted to run around, climb on tires, ride a tricycle, and Atti couldn’t do any of those things. They had fun riding in a wagon for a little bit, and they played in a pit of corn kernels, but for everything else, I had to be his legs. Which is freaking exhausting. I had to climb onto the bounce platform and bounce him up and down since he can’t jump, I had to drag the wagon across paths covered in bark since his wheelchair couldn’t roll on the chunks of wood, I had to lift him and hold him as we ran across the tires, or got onto swings, or went down a slide, which is all wonderful, I don’t mean to sound like I’m complaining about those things, but it is EXHAUSTING.

So then I came home and crashed on the couch and I didn’t move for hours. And I promised myself I would stop feeling guilty about the lack of play dates in this guys life. He has plenty of time to catch up on play dates! I tell myself. Plenty of time when the only object of play isn’t running around. When he can actually play with his friends in a way that makes sense for him.

But then, as is always the case with parenthood, you start to fret that your balance is out of whack again and you start telling yourself that he’ll be that weird kid that will only meow when the teacher calls on him because he doesn’t know how to talk to people.

Some days I feel like I’ve got this parenting thing down so hard I should get a talk show, and other days I feel like I have no idea what I’m doing. I know that Atti knows he is loved, so I guess the rest of my angst will just sort itself out one day.

Year of Pleasures: Reading

Atti playing with ipad

Atti can read you guys. I mean, I don’t know when exactly you can start counting, he obviously can’t read everything. But his sight skills are amazing and my teacher friend tells me he’s a “decoder.” Not being a teacher myself, that doesn’t mean anything, but she was impressed so I’m bragging about it. We downloaded a couple of sight word flashcard apps for Bear’s iPad and Atti begs us, seriously, BEGS us to let him play with it all the time. We can use flashcard time as a better bribe than dessert. Music and books are his greatest loves. It makes my heart sing.

End of Summer

Playing outside
So it turns out I am all too human. I mean, this is something that I rarely forget. I’m gentle with myself in relationships, in my needs, in how I care for myself and others, and yet the thing I have a big fat superhuman blind spot to is my productivity. And it all comes from inside myself. I’m not one of those women who needs to please others or meet the demands of a busy husband and children. All my demands are on myself. What I want to accomplish, what I *have to find a way* to accomplish is sometimes very very different from what I actually can accomplish.

Hit!
This whole summer Atti’s been doing ever more adorable things, wanting to play outside and swing, crawl around in the grass, snuggle and sing, and I’ve been putting him off. Begging for a few more minutes to work, promising I’d get around to it later. Bear’s been playing in a softball league and I only made it to the championship game. I haven’t cooked in weeks, I haven’t exercised in weeks, there is so so much I want to write about that I haven’t had the time to dedicate. And it’s all Mitt Romney’s fault. (kidding Republican friends! Keep reading.)

My dear dear friend Joanna wrote a fabulous, touching, hilarious book and nobody wanted to publish it. Because it was about Mormons and who cares about Mormons? So she self-published because she believed in telling the Mormon story and it was wildly successful and got picked up by a big publisher and now she’s in Target and on the Daily Show. Everybody cares about Mormons right now. Thanks to Mitt everyone is either supportive or curious or skeptical, but everybody cares.

Bear on deck
So since I’ve had this novel in my head for the last three years, I knew that this was my chance. If I can’t get it published now, I probably can’t ever get something published. I’ve been working and working and working. Working like I’ve never worked before. Pushing out first 1000 words a day, then as the year started growing short I bumped it up to 2500 words a day. I was hoping to have it done at the end of August so I could go on my family vacation free and clear.

But then we had to move unexpectedly – more on that later – and Atti was out of school, and I had this fantastic opportunity to work with Maker Studios that I couldn’t pass up, and before I knew it I was the primary caregiver for a disabled child, with all the work that entails, writing two blogs, producing a web series, moving, taking fertility drugs, and writing a book.

I crashed. I crashed hard. I mean, is it any wonder?

I tried to give myself a bit of a safety net by calling in friends as guest posts, but that actually ended up being just as much work as writing the dang thing myself. So I just had to do what I could do.

I’m about 80% done with the book. I think I’ll easily finish it before the election, but I do worry that every day longer I take is less time to sell it. The ticking clock over my head is relentless. I thought I’d spend the family vacation doing rewrites, but instead I slept. I slept like Jenny in Forrest Gump. Slept like I hadn’t slept in years. I was at a beach house right on the water and I barely left our bedroom for two days. My own energy level is beating back against that ticking clock like a rock in a stream.

Bear on deck
So what can I do? I want to treasure these fleeting moments of parenthood, but I want to treasure the moments he’s five and six and seventeen too. So unless I want to put all my own endeavors on hold until….when exactly?….I have to find a way to cram it in. I want to celebrate summer and my family and spend time nurturing my relationships, but I can’t just be the grasshopper. Sometimes I have to be the ant. And this summer has been full on ant mode. If I can do it I’ll make all my dreams come true. Isn’t that worth an intense amount of work?

My friend Kelly was saying that one of the hardest things about being a modern woman is that you have to fit your life around the lives of everyone else. If you want to have goals of your own, you have to make them fit in the slivers of time in between everyone else’s needs. I think that is so true. The other day I finally had to tell Jared to stop calling for help when he gave Atti a bath. He figured that since we’re both home the job would be easier with more hands. I had to spell it out for him: the only way I get anything done is in 15 minute increments while nobody needs something from me. So while I finish this book I need you to try and need me less.

Watching the game
I am an ambitious woman with big goals. Who adores her family and a simple treasured life. That tension is a good thing I think. It’s how everything gets appreciated, how moments get cherished, how opportunities get grasped. But it also means that sometimes you have to say, “Give mama a minute to finish work.” And then other times you have to say, “Screw it. I’ll miss the deadline. I’m going to go play outside.”

Moving Day

Big Boy Bed
As if things weren’t already crazy enough around here, what with the book I have to finish in a week and the fertility drugs and the new youtube channel, we also had to move. Luckily it’s only a couple of miles away so we could get by doing most of it in the van and unpacking as we went. No weeks of living in and out of boxes, no hunting down the boxes, no living without things until the day the truck came and then living without anything until it came back and hoping everything came with it. As moves go this one was about as simple as it could get. But as timing goes, it was just about the worst.

We got pushed into it though and it couldn’t be helped. We have been having landlord troubles the whole time we lived here, but we hoped that if we kept our heads down, paid our rent, ignored the occasional crazy email and didn’t ask for anything, then we could get by. But that proved untenable. Yadda yadda yadda, don’t want to get too far into it for many reasons but mainly because I don’t want my blog to show up in yet another deposition if she decides to be as awful as she possibly can be, it was time to go. Now.

This is going to be a great change for us. The internet brought me yet more bounty as it led me to a fabulous house on Craigslist, that came with landlords as ready made friends. The house ended up being owned by a friend I made at the yarn shop a couple years ago, whose husband runs a company remodeling kitchens. There’s a garden in the back with basil and tomatoes, and crown molding on every surface. I’ll show you around tomorrow.

Kicking back
Since we had to take the crib apart in the move, we decided to face the fact that our baby is now a preschooler and we were long past time to let him have a big boy bed. We bought a crib that would convert to a day bed, but until very recently Atti still would have fallen out of it, so we left things alone, content to milk those baby years as long as possible. Now my heart is breaking. Don’t these kids know how much it hurts us when they grow?

Being able to get out of chairs and down off beds has been a huge milestone for Atti. He’s climbing up a few stairs at at time, he’s wiggling out of wherever I put him, and I no longer have to rush to catch him when he rolls off my bed. Now he gets a focused look on his face like a rock climber scaling a particularly treacherous cliff, and lowers himself to the ground. Sometimes his landings aren’t so graceful. Sometimes I have to come behind him and remind him to bend his knees, but he’s strong enough now that he can do it without getting hurt. Which is thrilling, but like every time your child hits a milestone, so bittersweet. It is both a relief and a heartbreak to watch your children develop and need you less and less.

Atti in his new bed
When I had my baby shower – all held after Atti was born since nobody throws a baby shower in the seventh month – one of my Mother-in-laws friends bought me a little baby outfit and a pair of overalls in 2T. I remember looking at the preemie clothes and those overalls and thinking to myself, “He’ll never get that big!”

But they do. Today I’m feeling sentimental about leaving his crib behind, tomorrow I’ll be watching him drive and thinking back to how small he looked in his first big boy bed.

UNCLE!!

Atti reading

Last night Bear was getting Atti ready for bed and asked him, “Are you going to go to school tomorrow?”

Atti sighed heavily and said, “Yeah, Mama’s tired.”

Boy oh boy does he have my number. I am tired. Clomid is kicking my butt from one end of my life to the other, my two blogs are always needing me, and I am currently working on two other enormous projects, one launching a youtube channel, and the other this novel I’ve been working on all year. I knew going in that this year was going to be crazy, which it’s definitely turned out to be, but not in the way I expected. The major problem I’ve been having is not a Mormon writer in a Mormon moment, but my own abundance of creativity. I’m inspired in so many ways and with such an energy that my poor body is having trouble keeping up.

So I’m calling in the troops. Over the next few weeks I’ll be peppering in some guest posts from my bloggy friends. They come from all over the blogging map. Mom bloggers, lifestyle bloggers, craft bloggers, personal bloggers, and I asked them all to write about the power of creativity in their lives.

My novel is over half finished and I know exactly where I’m going with the rest of it. My goal is to crank this out by the end of the month so that I can send it off to publishers while people are still interested in a Mormon story. But to make that goal I have to write 2500 words a day. I’m having a one woman NaNoWriMo.

People who don’t have my frantic creative energy often shake their heads at me, mystified by what I’m attempting to accomplish. I’ll write more on the specifics of that another day, but for now I’m just going to focus on showing, not telling. In my writing, and in my life.

Year of Pleasures: Atti’s got wheels

Atti goes exploring

We drove over to the church Sunday night to snap a few pictures for Foxy Like A Crafter, and we let Atti go nuts in the empty parking lot. It was like unleashing him into the wild. He zoomed all over the place, wheeled up to flowers to give them a tug, did spins and hockey stops, the freedom was exhilarating. For him, and for us.

Year of Pleasures: State Fair

On top of the ferris wheel

Atti and I got to go to the fair just the two of us while Bear was at work. They ran a Special Needs day where special needs families got in free and got to ride all the rides they wanted until noon. We took full advantage of it, eating cotton candy and banana shakes and riding the carousel and ferris wheel over and over again. Each ride we went on became Atti’s favorite and I couldn’t get him off of it. I’m just glad I wasn’t paying. This kid has expensive tastes.

There was also entertainment by a group of adults with mental disabilities who sang their favorite covers. We sat and grooved to it while we watched a bunch of other adults dance around together and flirt and enjoy each other’s company. I had a grin on my face and a warm spot in my heart the whole time.

Before I had Atti I couldn’t imagine ever enjoying having a child with special needs. Now I not only enjoy it, I’m grateful to be part of the club.