Lead Balloon

I've been collecting Willow Tree angels since I was 15. Back before they were sold in Hallmark and every other store imaginable, this little florist by me sold them. It was one of the few places where you could find them, and I just fell in love. I haven't gotten any new ones in the last year or so, due to budget and Shane never remembering which ones I need, but this little boy with the Hope balloon is one of my favorites. I bought him for myself ages ago and I bought him for Sara Joy on sweet Joel's first birthday.

I love him and his hope balloon, but lately, my balloon has felt a little deflated. Like the helium has all gone out and instead of holding it aloft, I'm just dragging it after me.

I'm trying. I'm really, really trying, but there are so many heartaches with work and I wish I could talk about them, but you know I can't, life, love, everything. The dumbest things hit me and hit me hard, like realizing that for the rest of Tommy's life with me, I'm going to have to write epilepsy on his medical forms. When he starts school, his teachers will get medical info from the nurse stating that he has epilepsy. I drag that little hope balloon behind me with wishes and prayers that he will outgrow them, but how it was burst and drug down a little further when he had another seizure Monday night. As I type this, he's sitting on the floor with shoes on his hands clapping them together and how can I feel anything but hope when he's so healthy, so normal all the time, but. When people ask how he's doing, I never know how to answer, shuffling my feet and words, because of course he's fine when they ask. Of course he's a normal, healthy one year old, but. The seizures and the images I can't get out of my mind, his blue lips, twisted in a silent scream. I hate it. I know that blue lips are normal for his seizures. I know that they don't mean that he isn't breathing, but my heart shuddered on Monday while his little body shook in my arms and thought, nononono, this is wrong, so wrong.

Someone once told me that you can't rank pain. If you're having a bad day, a really bad day, you can't allow yourself to brush it off and say, Oh well, at least I still have a house/job/family, unlike some people. And while you should of course remember to count your blessings, you can't brush off your pain because someone else's pain is worse. I've caught myself doing that, thinking that I have NO RIGHT to be sad or upset at everything, because it could be so much worse. I know this. I do. But in the here and now of my days, I roll the word epilepsy across my brain a million times a day and it makes my heart hurt because of all the I don't knows. Will he outgrow his seizures? Or will he learn someday to tell when he's going to have a seizure? My brain misfires, too, with migraines and sleep paralysis, are his misfires related? Is it my fault? Will he have another seizure tomorrow? Next week? Next month? Never?

When will my heart heal?

Burgers for Breakfast

I am a major stress eater. I wish I was one of those people who stress cleaned, but alas, I prefer to sit on the couch and stress eat. It should come as no surprise, then, that yesterday morning after a sleepless night following Tommy's last seizure, I ate this for breakfast.



Yeah. I ate that for breakfast. Lettuce, extra pickles, extra cheese, mustard, ketchup, and greasy fries. As far as breakfasts go? It was pretty AMAZING.

(Oh, and this morning, I ate two chocolate donuts. I am a disaster.)

12 Days of Wishmas

Tommy had another seizure last night and I guess I should talk about how that makes me feel (bad/mad/sad/angry/questioning), but when I couldn't sleep, I spent a lot of time online window shopping last night to try and calm myself down (and also watching Season 2 of Dexter, which is probably not the most calming show), so instead I'm just going to talk about the superficial today, k?
Once Shane and I had kids, we stopped splurging on each other for Christmas. Usually, we do get one or two things for each other, but this year, thanks to an ill-timed rise in insurance premiums and the deductible, we're on a pretty tight budget. And of course, there's never a good time for a raise in costs (especially when there's no salary raise to go along with it), but I think we can all agree that a rise in costs that corresponds with a month in which we spent more on medical costs than we would normally spend in the course of several years is just really, really bad timing. Still, despite the lack in Christmas gifting for one another, that doesn't mean that I can't imagine a world in which my true love will give me twelve days of Christmas gifts (no lords a leaping, though, thanks). Since most of my Christmas shopping has been on Etsy, it seems that I can't stop myself from favoriting things that I'd like to have too.

* How perfect is this Two are better than one canvas? It's such a simple statement, but means so much.
* Even though I just said that I was mostly shopping Etsy, I can't stop myself from drooling over various Matilda Jane pieces, especially the Burnie Tee and Honey Dew top. I love, LOVE basic items that can be a staple to both my professional and personal wardrobe.
* Shane and I both adore Julia Child and of course, this quote. I love the way it's presented on the canvas.
* Be Kind to Yourself. Who doesn't need this reminder?
* I've had a can of grey paint waiting for my bedroom FOREVER and when I finally do paint it (hey, maybe my imaginary Christmas list should include a house painter), I can envision this shelf on the wall. I love the napkin holder by the same seller. We use cloth napkins, so having a table organizer like this would be perfect.
* Love this chalkboard. I can picture it in our kitchen with grocery lists or sweet messages written on it.
* This Maya Angelou quote is how I want to greet each and every morning.
* I have one gock's frocks skirt and would like an entire wardrobe of them!
* I am in mad love with this upcycled Bloom sign. I've purchased from this seller before and the way he turns junk into art is so inspiring.
* This little birdie makes me think of my grandma and needs a place at my house.


What about you? What are you hoping your true love will bring?

Pieces of Me

I am forever amazed by the power of our hands. The hands that touch us, the things our hands do, the shapes we make with them, the way they can hurt, the way they can heal.

Before she died, Shane's aunt began a quilt for us. She didn't finish it. Last weekend, his uncle gave us the quilt, finished by her quilting circle of friends. So powerful it is to hold something touched by her hands, knowing that we'll never touch them again {this side of the veil} that although I'm a comforter person by nature, I laid the quilt on our bed this weekend.

As my hands smoothed out the wrinkles, wishing they could just as easily smooth out the wrinkles of my heart, it was that needed, quiet reminder that life is short but we leave behind impressions. Like patchwork pieces, we weave our lives through the wrinkled and smooth, hoping that we leave behind just enough squares to be remembered.


I don't know how to make anything with my hands. I know only how to wipe feverish brows, brush aside tears, hold hands, pull in tight for hugs, and gently, softly love. I hope that's enough.

All Things Known

We had a follow up visit with Tommy's neurologist on Friday. It was a lovely day to be in the city, with the weather cool but certainly warmer than normal. We arrived early and walked to a pizza place less than a mile away from the children's hospital and Tommy had his first Chicago style pizza. I'm pleased to say that he recognized the culinary delight that is deep dish pizza and at any given moment, had cheese dangling from his mouth and sauce covering his hands.


Still, these visits are tiring in that I never thought we'd be making them. But it's all good news and well, we like good. We're doing a few things to treat/manage his seizures and so far, they seem to be working. The doctor immediately said how we had much more color in our faces than last time and how some of the exhaustion has been washed away. It's so funny, you think you're maintaining and putting on a brave face, but sometimes you just can't. She said that last time, it was like we were at the top of the terror alert scale, but now we've gone down a color. And seriously, I wanted to hug her simply for sharing my love of analogies. His EKG was completely normal, as we'd suspected it would be. Eventually, we'll do a repeat EEG and then eventually, we'll just wait and count on our fingers the number of years that pass seizure free. I hope.

So, he is doing well and we are doing better every day, but truthfully, I am tired. Just very tired and wish I could sleep for maybe twenty hours or more.

Serenity Now

Serene: 1a: clear and free of storms or unpleasant change serene skies>
b: shining bright and steady serene in glory — Alexander Pope>



2: marked by or suggestive of utter calm and unruffled repose or quietude



{I took these with my phone because this week has been anything but serene}

The End of an Hair-A

Since Tommy's birth, his hair has been his thing. In the first few calm minutes after his birth, I remember looking down at the top of his head and thinking, Oh, he has way more hair than Luke. I think I spent the first 24 hours of Tommy's life with my nose and mouth buried in his hair.
After his baths, it would fluff up and be so delicious.

He never really went through the bald baby stage. Instead, he just lost some off the sides and had this totally rocking fauxhawk.

But of course, as he got older his hair got longer. But it's so cute! It's so Tommy! Except that, everyone started calling him a girl. And I mean EVERYONE, including the phlebotomist at the hospital who, hilariously, walked in, looked at his chart and said, "Oh, I think I'm in the wrong room." And I said, No, we're waiting a blood draw, to which she replied, "Oh, okay. Could you put your daughter Thomas on the bed?" Yes. She thought we'd named our girl THOMAS. So many people called him a girl on Halloween that I just stopped correcting them, figuring that as long as they were handing him (me) candy, I was okay with the gender confusion.
While I don't think girls need long hair and boys need short hair by ANY stretch of the imagination, I hated constantly correcting people and I hated the looks on their faces where they either a) felt bad for putting a foot in mouth, or b) looked at us like we were crazy dirty hippies for not cutting our kid's hair. Plus, it keeps getting in his eyes and tangling in the back and I kind of feel sorry for the poor kid. (But selfishly, I love his hair and still bury my mouth and nose in it every single night.)
Before we cut his hair, I had to bring back the fauxhawk one last time. Can you blame me? (And then, yes, I had to edit them in such a way that his hair is the focal point.)


(And then I cried for five minutes about how he won't look like my Tommy anymore and Shane stared at me like I had three heads.)
Not to be outdone by my tears, Tommy positively wailed through his first hair cut (unlike his brother, who smiled). At first, he was like, Hey! A sucker! This isn't so bad.

And then the reality set in, and he threw a fit that would've made any 14 year old girl proud. He screamed and cried the entire time, as if his world was ending. I don't usually take pictures of my kids crying, but SERIOUSLY? If I had the time and money to be getting my hair cut tonight, I would most certainly not waste it crying.


Afterward, we went out to dinner and I had to hold him the entire time, because putting him in a high chair resulted in frantic screaming as if he was certain someone was going to sneak up on him with a pair of flashing, silver scissors.

Oh, Tommy.

Snow Sweet

I do not like the snow. At all. So when I stumbled downstairs in the early hours of November 6th, to spot a snow plow zooming past and a generous covering of snow, well... let's just say that I was wishing I could hibernate until May.
But then Luke woke up and his excitement was almost contagious, as he could hardly wait to run outside and play in the snow. I bundled him up and he played until his cheeks were rosy and his body was covered in snow.

I have to admit, here, that I watched from the comfort of the kitchen table with my cup of coffee. I know. November 6th is just too early for ME to play in the snow.
Then I ushered him back inside with a cup of hot chocolate and a special snow day treat.

We snuggled on the couch, watch Toy Story 3, and when we were done? The snow was melted, which incidentally, is just how I like my snow.

Halloween Eve

I really, really love Halloween. REALLY. I loved it before having kids and actually trick-or-treated all the way through high school, because hey? It's free candy. I always wore a costume and was always polite, of course, so in case you're wondering (you weren't), I always give polite, costumed teenagers as much candy as I would a three year old.
ANYWAY, this year, we trick or treated two nights in a row. Saturday night, a nearby town was having trick or treating, so we stopped by the houses of our very good friends who live there. Since I already posted pictures from Halloween, I thought I'd share a few from the night before.
Tommy wasn't so sure about his costume at first, but it kept him warm and happy.

When the first trick or treaters came, Tommy raced to stand behind Shane's Uncle Joel (first stop on our list) to watch him pass out candy.

Luke decided he wanted to be a pirate almost a year ago and so he was THRILLED to finally put on his pirate costume Saturday night. Isn't he the best pirate ever?

Eight Counts

My first year of teaching, I coached the dance team. The dance season is eternal, beginning in August and ending in March, while you watch all other coaches start and end their seasons, you keep going. It was hard on a first year teacher, on a newlywed, not getting home until 8:30 every night my husband keeping dinner warm in the oven, falling into bed exhausted getting up and returning to school just eleven hours after I left. So immersed in it I was that I felt like I spent my entire day doing eight counts in my head (one and two and three and four). At this in my life, this time of constant eight counts, I realized that both sets of stairs in our house take exactly eight steps to get from top to bottom.

I know. I know you're wondering what any of this has to do with anything, but I hate that sickening lurch in your stomach when you're going down the stairs in the dark and you lower your foot expecting another step, only it crashes down through thin air before finally meeting the floor? Or worse when you think you're all out of steps but really there's one more and you stumble and fall and lurch? So I count steps. One and two and three and... well, you get the idea. I count steps because I hate that feeling, that lurch, that momentary uncertainty when your brain isn't quite sure what's happening.

That's how our life has felt since Tommy's seizures, and I feel like I've been doing a constant eight counts to find my way back to normal. Except that I'm realizing that our life is a new normal, a new brand of eight counts, finding normalcy in all the things I didn't know a month ago. I didn't know the sting that's felt when a doctor tells you your child was probably just having a temper tantrum, when you feel like you're being judged for making it up because he looks just fine now and you have to FIGHT and use words like "absence seizures" and "grand mal" and tell her how you saw him fall, how he was smiling at you and then BAM, just hit the ground like someone had turned him to stone to make her believe you. I didn't know that my calm parenting, the mom who never checked to see if her babies were breathing, would morph into someone who tiptoed into the nursery 1, 2, 3, 4, 5, 6, 7, 8 times a night to place an anxious hand on the rising-falling chest, counting breaths and heartbeats. I didn't know how my always calm, even-keeled husband's voice would reach a frantic level of panic when he thought something was horribly wrong with our child. I didn't know what it'd feel like later, in the quiet of our bedroom to admit that we both thought his blue lips meant he was dying and that in that moment, we both felt like our worlds had stopped and would never start again.
I also didn't know that November is National Epilepsy Month, but I know now. Because Tommy's seizures are inexplicable, he was diagnosed with epilepsy. I never knew this. I thought epilepsy meant having a seizure in reaction to flashing lights, but actually, it can mean so much more. I didn't know about the eight counts away from the last seizure (October 16), but I know that in our new normal, each seizure free day is more beautiful than the last.

This is the face of epilepsy.
He's in good company.

'Tis The Seasons {giveaway!}

Giveaway closed. Congratulations to Kristen, comment #4!
I know it's only November 2, but I also know that many of you are like me and you're probably already planning for those holiday cards, right? And if you're like me, you're also planning on ways to BUDGET this Christmas but how can you possibly budget out cute holiday cards? I know I can't. I get a kick out of mailing them and then of seeing them displayed on people's fridges, walls, and mantels.

So, of course, when I jumped at the chance to giveaway a $50 gift card to Photo Card Creations (oh, this is one of those giveaways I wish I could win myself!). I'm kind of swooning over their unique selections, especially the die cut shaped cards. The scalloped edges made my eyes happy at first, and then I read on that you can order them with a punched hole and silver string so that (this is seriously so fun) they can be used as ornaments. I am, unfortunately, not a very creative person, so making ornaments for people is out of the question, but I know that we have so many relatives who would love a photo ornament of the boys. I'm also a huge fan of the folded Christmas cards that leave room for more than one photo (you might remember that they made Tommy's thank you cards) and they have a great range of Hanukkah cards, as well.
They also have Happy New Year's cards, which is an idea that I love. Last year, we sent out happy new year's cards post-holidays and it's something I plan to do again. After the holiday rush of cards and presents in your mailbox every day, the mail feels a little lonely when January rolls around, so what perfect way to brighten up someone's day than a simple wish for a happy 2011? I like these, too, because they're non-denominational.

Take a few minutes, check out their website, and let me know what your favorite card is. Personally, I'm loving the simplicity of this card and I'm thinking it might just be perfect for our family this season. Comments will remain open until Friday, November 5th, when I'll choose a winner for the $50 gift card via random.org. Good luck!

Trick or Treat

The trick was getting my pirate and scarecrow to stand still for a photo.

I failed, but the treat was them, this excitement. Tommy didn't really understand what was going on, except that at each house someone put candy in his bucket and he thought there was nothing better than this, holding tight to his bucket and meticulously tucking in any candy that might be about to escape. We had to empty his little bucket ten times.
And somehow, someway, we made it through the night without the pirate maiming anyone with his sword. He said ARR more than he said trick-or-treat, but I suppose no one expects pirates to be polite.


I have so much to say and a giveaway for $50 toward holiday cards (I know, I want to win it myself), but also, I have a little boy just now stumbling out of bed in the midst of a candy hangover and another who has been up since 6AM (which is sleeping in for him) and the day off work, so how I can possibly fit in all of this online life when my real life is so beautifully full?