Atti hard at work

Tomorrow’s the big day. My brave little guy is going in for surgery. I really haven’t been that concerned about it, honestly. In fact I’ve been so far from concerned that I actually missed his first pre-op appointment and sent our whole schedule into a tailspin that we haven’t fully recovered from. It’s just his eyes, he’s not sick…But now that it’s here, well, who could help but freak out?

Atti in the walking harness
His physical therapist is really gung-ho, and I love it. As soon as we started coming to see her, she just skipped all the stuff in between and said, “We’re going to get this kid walking.” Atti adores her, and he adores his time on the treadmill. The PT sits behind him and moves his legs in the walking motion. He laughs hysterically, and she tells me that he’s doing more and more of the work himself every time.

Learning to Cruise
He works so hard. When I see him around other kids his age it’s so easy to get caught up in what he can’t do. Or even to get caught up in the myopia of just what we’re working on, and to forget what a miracle he already is. It’s hard to stay in the moment when you’re working with everything you have to get him to a normal future.

I’ve been trying to remind myself of all this as I’ve been freaking out about his surgery. It was not that long ago that we were holding our breath to see if he was going to be blind. Since then we’ve faced so many new concerns and conquered so many other problems that we’re eons away from that initial terror, but I’m trying to remember it. So that I can tell myself that this terror will go away too.

I’m sure that in a year’s time I’ll be obsessing over his latest milestone, trying to remind myself of being freaked out about a minor surgery and how it turned out to just be one more thing that happened along his way. But no matter how brave I aspire to be, no matter how minor this procedure is, no matter how hard Atti works at what’s in front of him, he’s still my baby and I suppose it’s just part of the job description that I should worry.

2009 Year of Pleasures #24

A dream come true…

Dance Party

I’ve never been a baby person, and whenever I would talk with friends about having kids I always used to say that I wish they came out at three years old. That’s when they can talk, and color, and play, and until I had my snuggly little guy, I just never saw the appeal of them any younger.

I have since become a convert to babies, especially little baby necks that just beg for nuzzles, but I am in absolute heaven right now – still trailing the last of babyhood, accepting all my smothering kisses, and yet starting to communicate with the world, starting to play. This is really a spectacular age.

Atticus is just as music obsessed as ever, and the other day when a particularly bouncy song came on I just couldn’t help myself. We spun and bopped and danced around the living room together, Atti laughing like a madman the whole time.

Dancing

This motherhood stuff. It’s pretty great.

Atti’s on a roll

Look at him go!

Ladies and gentlemen, my son can now officially sit up on his own.

A new day has dawned. Now I can take him to Target and not face the struggle of carrying him in my arms while I push a cart, or trying to push a cart and a stroller at the same time, or trying to haul around a 20 lb car seat full of 20 lb kid.

No, no. Now I can sit him in the cart like a regular old kid. Now he can sit up, supporting himself, without any help. Now he’s getting closer and closer to independence.

Atticus can sit up!

I’m so proud of this guy I can barely stand it. He’s such a little champ.

Next step? He gets his eye operated on July 7th. It’s terrifying, but good. I’ve learned that every single thing is connected, and once he’s got those eyes fixed I’m sure that he’ll keep this streak alive and accomplish even more.

What a little wonder.

A Cure for the Blues

With as frequently as the sad days descend around here, I pride myself on how hard I work to avoid the pity parties. For every weak day I share with all of you, there are hundreds more weak moments that I force myself past with a stiff upper lip. And then when I just cave in and need a day to feel sad and worried, I never indulge myself too long. I know I need to feel my feelings, but I also don’t want to spend a lot of time on things that won’t solve any problems.

So, with that being my focus I set about kicking my gloom this weekend. I did my usual routine of indulging in things that bring me pleasure, I slept in, watched lots of lame movies, and then decided to tackle a smallish but nagging project so that I could feel like I had accomplished something. We picked up a bunch of plastic bins from Target, I busted out the good old P-Touch labelmaker, and I went through everything in Atti’s closet to see what still fit and what could be packed away.

As I was folding all those tiny clothes, I couldn’t help but get nostalgic about where he’s been. All the preemie clothes that we dressed him in in the hospital, threaded over tubes and wires; the clothes we were given from friends and marveled at, thinking he would never fit; the clothes that were permanently stained with spitup from the months and months we tried to get him to eat and keep it down despite the acid reflux. All those things that terrified me last year, are no longer an issue. He’s faced all those early threats and tackled them, I have no doubt that he’ll just keep right on going.

And then, if I needed another reason to kick off the self-pity, yesterday Atti decided to crawl:

Maybe he realized he was starting to freak Mama out and it was time to stop playing around.

Another Funky Day

If you’ve been reading along with me for any length of time, I’m sure that you’ve picked up on the roller coaster of emotions I’m on trying to parent my sweet little guy. Sometimes I wonder how different this would be from parenting any other child. Maybe I would still have days like today where I’m sad from all the pressure and worry I feel trying to help him meet his full potential. Maybe it’s just part of parenthood. Maybe it’s all hitting me harder because right now the stakes are so high for him.

Atti and his piano

As of yesterday Atti is 16 months old. His adjusted age, what he would be performing at if everything was perfect, is 13 months old. But he still can’t sit up independently, he can’t hold a bottle, he doesn’t crawl or walk. He struggles to eat mushy carrots.

I know I’ve written this post before. This is part of going through therapy. He has fallow periods. There are long stretches where it seems like he’s doing nothing, and then one day I’ll wake up and all of a sudden he’s got a new skill conquered. Those fallow periods are integral to therapy. He’s slowly building muscles, gaining size and strength, conquering all those infinitesimal steps along the way to achievement that I can recognize. I know that in a few weeks I’ll be in a new place, with new skills we’re working on. But the bigger he gets, the more these fallow periods wear on me.

This weekend we went to cousin Micah’s birthday party. 20 six year olds were running around having a wild rumpus while I sat on the couch with Atti just watching. I held the 7 month old baby of Bear’s cousin and I was absolutely shocked at the difference. The baby offered resistance. He stood on my lap like a ship captain. He sat up without my help. It was probably the first time I’d held anything other than a newborn in Atti’s life and the difference was heartbreaking. You tell yourself that he’s not that far behind. He’s not that different, he’ll just catch up. And then to feel it for yourself…it’s kind of hard to stay in your denial bubble after that.

So I gave the baby back, took Atti off his grandma’s hands, went back to watching the other kids run around, and thought about Atti’s future. He’s now 25 pounds of dead weight. What not too long ago was a delightfully snuggly little feature, is now serious work to carry around. His grandma is 5’2″ and already struggles to manage his little body. We are not far away from addressing using a stroller like a wheelchair, everywhere we go. And that would mean a whole lot more sitting on the sidelines and watching as all the other kids ran around and played.

Then on Monday we went to the birthday party of a friend of ours. They took over a little pizza place and we all got together to have a nosh. But we got there late so the place was really crowded and all the chairs were taken. We left the stroller in the car thinking that it would just be hard to manage and in the way, and we’d be fine once we were sitting, but then there was no where to sit. So we ended up standing against the wall trying to juggle Atti, the big diaper bag, and two plates of food. Then Atti choked on a noodle and barfed all over Bear, so we threw up our hands, apologized to our friends, went home and I’ve been despondent ever since.

There’s just such a steep learning curve to parenting this kid. He wants to move so badly. He gets so mad, he throws tantrums, he bangs his head against the floor. His tests say that he’s advanced in a lot of the emotional/intellectual aspects, so my little guy is already entering his terrible two’s, exacerbated by the fact that he cannot do what all the kids his age are doing. He gets mad, my heart breaks even more, and I can’t help but think about what our lives will be like if he never gets more mobility.

Atti in the Exersaucer
I keep trying to remind myself of that parenting mantra – Everything will pass. For good or for bad, everything will pass. During these fallow periods it’s so tempting to think that things will always be like this. That from here on out, this is what my life will look like. But it won’t. He may be going slower than other kids, but he hasn’t stopped yet. So I just have to find a way to hang in there.

The Big Day

Cooking School Homework

For nearly a year now I’ve been going to a community college culinary school, and tonight is my very last class. Every Thursday since last August I’ve been dropping Atti off at Bear’s office, donning my chef’s whites, and going off to chop and boil to my hearts content. I have a fantastic team of students I work with, and tonight we face our big exam – an iron chef style make something up on the spot challenge.

The biggest thing I learned in culinary school was just how much I already knew. There were definitely lots of “better ways” I learned, but on the whole nothing was new to me. I’ve been making veloute for years, I just always called it gravy.

This experience has really taught me a lot about how I approach life. I worked so hard for my education, and I have such a respect for it, that when I think about something I want to get really good at, I often think about going back to school for some intense study. Especially in art and writing. Those are two fields that I love, and two areas I feel intensely self conscious about because I so badly want to be good at them. For years and years I’ve thought about getting a MFA in creative writing, but the time was never right so I waited and waited, and never picked up the pen. But maybe I know more than I think I know. Maybe I can’t diagram a three act structure for you, but maybe I can still get my point across, just using a different name.

If the opportunity comes along that I can take some art classes, I’ll jump on it, because I can certainly learn the better way to do things. But maybe I need to stop waiting for that opportunity and just experiment my way along just like I’ve done with cooking. Because I’ve been making spaghetti space just fine for years without ever realizing that it was a tomato coulis.

Now, I have to go memorize some sauce recipes, just in case I’m called upon to bust out a Hollandaise at a moments notice.

Is Special Needs such a bad thing?

Tuckered Out

Among many Mormon women, Mother’s Day is secretly not a day of joy. We tend to have such high standards for ourselves that most of us feel constantly lacking and view Mother’s Day as a day to face up to just how far short we’re falling. Please don’t think there’s anything doctrinal about that, it just seems to be a common occurrence. I wonder, do the rest of you feel that tension? Do the rest of you feel guilty instead of celebrated?

During all those long years of infertility, Mother’s Day was thought of as “Hide the Razors Day” in my house. I’d skip church to avoid hearing the talks of how divine motherhood was and what angels were walking among us, angels that did not include me. And after years of discussions with my friends with kids, I fully expected to continue hating the day once Atti got here. But I don’t. I don’t feel this tremendous depressive guilt. I don’t feel like I’m lacking in all kinds of disgraceful ways. I feel so proud of what I’m accomplishing every day when the challenges I’m facing are so great.

Story Time

I think the trick is the whole letting go of expectations thing I’ve been forced to do. Once I accepted the fact that Atti had special needs, once I accepted that his growth was never going to match up with a neat little pediatrician’s chart, I let go of expectations for him and all the expectations I had for myself just went right along with them. It’s like all the regular mommy judgments don’t apply to me because we have a big asterisk on us over here.

How could I carry guilt for not breastfeeding when it was because Atti had special needs? How could I beat myself up about not using cloth diapers when it was because Atti had special needs? How could I feel bad for not holding him more, letting him watch television, exposing him to plastic, blah blah blah, when it was all because he had special needs?

Special Buddies

By no means do I feel like the perfect mother. And I can’t claim to be 100% guilt free. Like anybody else I worry about not exposing him to books enough, not doing his exercises enough, not getting his feedings right, scheduling him too much/not enough, whatever. But I can say that I am guilt reduced. Guilt reduced enough to take a day to sit back and be proud of what I’m accomplishing.

Through the months of therapy, I’ve learned to recognize every tiny feat Atti manages. We clap when he pushes up on his arms, we cheer when he picks up a cheerio, and we rejoice when he poops. I understand now what a miracle it is when he can coordinate the hundreds of muscles it takes to eat his food. Changing the way I view my child seems to have changed the way I view life. It’s like I changed the lens I view the world through to macro.

Kissing

I can’t really explain the pride I feel in myself when I can solve the little mystery of my child and give him what he needs. If I take care of my son all day and just manage to vacuum the rugs, I feel productive and virtuous. I can’t help but celebrate all the tiny little milestones in my own life as well. Today everyone got a bath. Yeah me! Today I made dinner and cleaned the kitchen afterwards. Whoo Hoo! Today I only spent two hours online. Hooray!! Understanding what Atti and I are fighting against makes me feel downright heroic just making it through the day.

Kissing Back

The thing is, every one of us has some kind of special needs, don’t we? A child with a challenging temperament, a husband with a demanding and time consuming job, maybe no husband at all, health problems, mental health problems, financial problems, lack of support systems, more than one young child, poor parenting examples, lack of education, you get the idea.

I don’t think that we should just sit back and make excuses, but maybe we all deserve a day a year to sit back, appreciate the special needs we’re overcoming, and feel proud of ourselves. Day by day we’re all struggling along the best we can, we all are striving for more. We’re accomplishing a mighty work here, shaping these young lives and creating sanctuaries of love and peace. Every day of the year we push ourselves towards better and demand the most of ourselves. I plan on spending Mother’s Day taking a deep breath, looking at my life and feeling proud of myself for doing what I’m doing despite everything working against me.

Hands

I hope you will too. I hope you’ll take a day to recognize your worth. I hope you’ll look around at everything that is blossoming under your care and appreciate just how often you’re succeeding, and how much you are treasured for your efforts.

Happy Mother’s Day

Busy busy busy

My healer quilt is in the wash, the therapist comes in two hours and I have two days to make a second quilt for the church auction, when I’ll be gone most of today. I’m frantically working my fingers off, so I figured you’d all forgive me as long as I post baby pictures.

Big boy
This picture terrifies me. Where’d my baby go? Who’s this small child?

Toothy Grin
Who’s this small child with six pointy teeth?

Playing outside
I keep wanting to spend as much time outside as possible before the hot weather moves in, but since Atticus is still immobile, that gets to be a little tricky. I finally pulled out the Pack n Play, tossed him inside with half the contents of his toybox and let him have himself a little toy orgy in there.

Partners in Crime
Since this picture was taken Atti has decided that he is so over the whole patching thing, and hasn’t let us patch him for weeks. We go back to the doctor on Monday where we’ll get special drops to put in his eyes to use instead.

Lobo and Atti are still best of friends. In fact, I just had Atti laying across my lap taking a bottle, and Lobo jumped on the desk, wound through the mess of glasses and papers, crawled down on top of him, and laid down for a snuggle. It’s like I have the dog babysitter from Peter Pan.

OK, I’ve got to get back to the sewing machine. I probably would have been done with this by now if I hadn’t had the bright idea of doing another big embroidery piece. Oy. Sometimes I need a good shaking.

The sun came out…

About a month ago, I was complaining about being deep in the motherhood trenches. Caught in a stagnant stretch where things seemed far too difficult and taxing than I had the resources for.

I’m now safely free of it.

I’ve always heard mothers say, “Oh it just seemed like he [fillintheblank] overnight!” And I always laughed politely because that’s the kind of thing that every mother everywhere says like it’s the most profound statement in the world, But I never really thought they meant literally overnight.

A week ago Thursday Atticus went to bed the same little kid he’s been for months. Still not sitting up, not crawling, not eating, communicating with a system of claps and giggles, and then he woke up Friday morning a kid with a whole new set of skills.

For months we’ve been working on his eating skills. The cerebral palsy makes controlling his tongue and mouth movements difficult, so it’s been interesting to learn just how much work goes into something that comes so naturally for most of us. He’s 14 months old and he still gets all of his nutrition from a bottle because he just doesn’t have the control to make the food do what it’s supposed to do. Until Friday morning. When he suddenly started eating his food from a spoon three times a day, and chewing up little pieces of Cheerios or cooked peas. For a solid week now he only uses his bottle for drinks and eats everything else like a real boy.

Lobo with the interception
Lobo is less than thrilled at Atti’s newfound skill with the spoon. He has to work a lot harder to mooch now.

He’s starting to respond with actual words, he’ll sit up in his high chair for an hour at a time, he’s starting to get a knee underneath him when he’s on his tummy. The other day Bear fed him a dinner of nectarines and green beans and made the mistake of giving the nectarines first. Atti spit out the green beans, clammed his little mouth shut, tossed his head all around, until I finally caved. I didn’t want to start fighting over food when he was just now starting to be positive about it. No sooner did the words, “Fine, let’s give him some more nectarines.” exit my mouth than he started grinning and let out a chuckle of self-satisfaction so perfectly timed that it seemed like a sitcom. Maybe tomorrow he’ll work on developing a poker face.

His therapists are overjoyed, we hugged and cried together, just amazed at the iron will of this little guy. He’s taking his own time about things, but he’s doing it.

Atti’s Playlists

Last week when I posted that video about Atti’s obsession with music, I got a couple questions about what he listens to, so I thought I’d share our favorites and hopefully hear about a few of yours.

His go to music that never fails is anything by Elizabeth Mitchell. She’s amazing. She can turn anything – folk songs, punk, reggae, – into music for babies by her simple guitar and clear voice. So far she’s released You Are My Little Bird, You Are My Flower, and You Are My Sunshine, and I’m waiting with baited breath hoping she’ll release something else soon. I think Atti likes her the best because she sounds like a mama singing.

We’ve started listening to a lot of classical music and opera – especially when I need a peaceful moment – and we listen to a lot of world music, but especially Ladysmith Black Mambazo. Bear lived in South Africa for a couple of years and came back totally hooked. It didn’t take me long to become infected as well. I’d play Shosholoza to my belly and feel Atti start wiggling around to the music. You can’t be sad when this comes on.

I also really love Kites are Fun by The Free Design. I have no idea what the story is on these guys. They kind of sound like the people who sang that song Afternoon Delight, but instead of singing about nookie they’re singing about bubbles and kites and running through the grass. I don’t know if it was intended as music for kids or what, I only found out about them because one of my favorite podcasts uses the music for their intro, but it is thoroughly delightful.

They Might Be Giants is also crazy awesome for kids now, and while I don’t have their ABC or 123 collections, I have been a subscriber to their podcast where they share the songs and animated clips. Atti just stares at the computer screen transfixed whenever I put them on.

I kind of have an aversion to a lot of music that’s made for kids, so I’m always looking for music he likes, but that I can listen to without wanting to jump off a cliff. We listen to a lot of bluegrass together – he really loves Gillian Welch, but what really made my life easier was when I ended up making a bunch of playlists for Atti that are made up of normal adult music, that also happens to be appropriate for him. He’s got a Beatles playlist, an Elvis playlist, a Motown playlist (every kid should know Marvin Gaye’s Pride and Joy), but my favorite is the playlist I put together of lullabies.

Lullaby – Dixie Chicks
Close to You – the Carpenters
Danny’s Song – Loggins and Messina
Alright for Now – Tom Petty and the Heartbreakers (closest version I could find)
Like a Star – Corrine Bailey Rae
Morning Has Broken – Cat Williams
Shower the People – James Taylor
I’ll Take Care of You – Dixie Chicks (the video to this one is hilarious, but the music is what I was looking for)
Somewhere Over the Rainbow – Israel Kamakawiwo’ole
You’ve Got a Friend – James Taylor and Carole King
To Make You Feel My Love – Bob Dylan (this is a cover by Adele – who I love – but I also really love Dylan’s original version on Time Out of Mind)
New Soul – Yael Naim
The One Who Knows – Dar Williams

That last song is OUR song. That’s the one I sang to Atti every day in the hospital. That’s the one I whisper to him when he’s at his most distressed. That’s the one that I can never get through without welling up. Gosh it’s beautiful.

Do you guys have any good recommendations?