Sunday, November 20, 2011

{everyday turkey}

Tomorrow morning, we go pick up Avram's brand new braces.

When we went in for the fitting a few weeks ago, the orthotics people were very reassuring. He won't mind them at all, they said; he'll love the support he gets from them. They fit right over his socks, but under his shoes, and he only has to wear them during weight-bearing activities (so, his feet are free for long car rides or while swimming). And guess what? You can put whatever design you want on them!

How wonderful!

All my worries seemed to have been put to rest, except for one final question:

"How long do you think he will need to wear them?"

"Oh, probably til six or nine."

"Months? Six to nine months?"

"Oh, no, years. Until he is six to nine years old."


Months, I was prepared for. Even one year. But years.


Of course the reel instantly started turning in my head, imagining Avram on his first day of preschool, the first time another kid makes fun of him because he has weird things on his feet, learning how to strap on his braces before he knows how to tie his shoes.

As a new policy, I am trying to not to cry as much.

Not because I think it is wrong or soft to cry, but I know that Avram will soon pick up the hint that I get upset about things. Especially things concerning him. And those hints, those are the hints he will take as to how he should react to tough things, to unexpected news, to other people.

I don't want him to cry or get defensive every time someone asks him why he wears braces, or why he has a scar on his belly. I don't want him to be scared of new people or situations because he feels that he is...different. So I know that I need to start reacting to this kind of news in a way that lets him know that we can take it, that we have Peace in all situations, that just because we have extra challenges doesn't mean that he is any less capable, or smart, or loved.

As I have been watching Avram today, as I have been busy with Thanksgiving preparations and tidying up the house, I am trying my hardest to stay grateful as we head into tomorrow. I mean, we have gone four months without seizures. That's the longest we have gone since the first seizure last Christmas. And his original shunt is still going strong, revision-free for 19 months. That is miraculous. He is pulling up to standing, drinking out of cups, starting to crawl on all fours, doing all sorts of wonderful tricks with his fingers. We have so, so much to be grateful for.

But it seems like every tiny thing, every milestone, Avram has to work for. It took weeks of therapy for him to hold up his head, months for him to bear weight on his legs and arms. If you only knew how much work it took to get this child to feed himself. Every reach, every new skill, we practice and practice.

And practice.

Everything is a battle, behind each step is work, work, work.

I know it is making him tough. I know it is making us grateful: you will never see two people cheer so loudly for someone picking up their own food, or pulling up to standing for the first time, or figuring out how to throw a ball. All the work, the strain, the crossed-fingers, the patient waiting...we take nothing: no step, no "ba", no pincer grasp for granted.

You should have seen this place erupt in cheers when the buddy popped up on all fours for the first time last week. We have been working on that for months; you would have thought he had just solved a Rubix Cube.

Tomorrow morning, we start a new chapter in Avram's story. A few months from now, taking our braces on and off we just be old hat; by next Christmas we will probably think nothing of it.

Maybe someday, new skills will come easier for my little guy. Maybe one day, we won't need the extra help, the therapy. Maybe.

And maybe they won't. Maybe it will always be a battle, a long road of hard work.

And if it is, well, then we will keep on working, keep on cheering.

And if it is, then around here, every day will be Thanksgiving.

Tuesday, October 18, 2011

{all i want for christmas}

One year ago, we were picking up Avram's fancy new helment. Many people have asked me how long he ended up wearing it and if it helped since I did a poor job of reporting on it. He ended up wearing it for a little over three months, and then his seizures started. We just didn't feel comfortable putting it back on him after that. The doctors were confident that the helmet didn't start the seizures, but it made us feel better leaving it off nevertheless. Although, looking back over pictures from October through January of last year, I can tell what a huge difference it made. His head was looking pretty funky, and it's so beautifully round now.

But like I was saying. It was October last year that we were picking up Ave's helmet. We may need to rename this month Orthotics October or something like that, because I just finished scheduling a fitting for the buddy to get some ankle supporting-booties.

Since he started cruising a couple months ago, we noticed that his ankles turned in pretty significantly, which is actually not that uncommon in little tikes standing independently for the first time (especially kids with low muscle tone, like the buddy). But, unfortunately, Ave's ankles have not corrected themselves. We head in on Halloween morning for a fitting for a fancy pair of these.

(Think they'll mind if we come in costume?)

Good news is that he only has to wear them when he is awake (three cheers for not having to sleep in uncomfortable plastic junk, like that stupid helmet--hooray!). We actually get to pick out a cool pattern for his new shoes, too, which I'm pretty excited about since we didn't get to do that with his helmet. It's not a forever thing, just a strength building thing. And, probably the best news of all, is that these cool new shoes will help his balance and coordination so much.

Bad news is...well, actually, I don't think there is any bad news. I think I've come to terms with the fact that Avram is just going to need some things that other kids won't need, and I'm just done being upset about it. I've fought God on so many things he has needed: his surgery, therapy, his helmet, and it has all done nothing but helped him. So, I surrender.

At least for now.

So, back to his balance and coordination.

A couple weeks ago, Ave had a bad case of Extreme Vomiting. I don't know what else to call it, because he didn't have a fever or loss of appetite. Not even an ear infection.

Just...vomit. Lots of it.

(aren't you glad you read my blog today?)

Fearing it was something to do with his shunt, our pediatrician sent us over to Parkview for a CT Scan (which, by the way, holy cats, that place is GIGANTIC).

In many ways, Avram getting sick that week turned out to be a blessing in disguise. For one, it got us in the system at Parkview. So now, any time we need to go, they already have all the information on the buddy that they need. Secondly, it calmed my anxiety about moving hours away from Children's Memorial. I love Children's Memorial, but I had such a positive experience at Parkview North that week. They moved quickly, were super organized, went out of their way to make sure Ave was comfortable, and kept me posted on everything. Phew.

Lastly, and maybe most importantly, it let to a possible change of Avram's diagnosis.

This is going to sound a little strange.

After the CT, I was called back in to the Radiology Department to speak with a neurologist. He asked me what we had been told concerning Avram's diagnosis, and I gave him the whole story about all the ultrasounds and and MRIs and yada yada yada and how they finally said he had Hydrocephalus and Schizencephaly.

The doctor sat there for a minute, then told me that based on the scans it didn't appear that Avram had Schizencephaly, but Dandy Walker Variant.

This was pretty bizarre to me, of course, because that's what my doctor said at our 20 week ultrasound, but then was later told after the Fetal MRI that he didn't have. No one has ever mentioned Dandy Walker again.

As he began to tell me the symptoms of Dandy Walker Variant, it just seemed to fit Avram so much more than Schizencephaly. When I read about kids with Schiz, they don't sound like our buddy at all. They have breathing problems, many can't eat solid foods, never walk or crawl (and if you know our little guy, you know that eating is definitely not a problem for him).

There are three kinds of Dandy Walker: Dandy Walker, Dandy Walker Variant, and Mega Cisterna Magna. Avram appears to have Dandy Walker Variant, which is the mildest form of the three.The biggest problems kids with DWV have are balance and coordination (sound familiar?), especially with fine motor skills (totally our little buddy). They tend to have at least average intelligence and do really well overall. It just fits so much more.

It's like everything suddenly just made sense.

Before I didn't really think that a name or diagnosis mattered that much, because whatever challenges we had we were just going to face them. But putting a name on it has, oddly enough, brought some peace to this mama's heart.

All the grandparents have suddenly jumped into Christmas mode around here, asking for lists and ideas and most-wished-for toys. I have had a hard time coming up with a list for myself, of deciding what I want, because really the only thing in the world I could want or wish for is for Avram to walk. He is so close, and working so hard.

 I want him to fly, to take off, to experience his first rush of crazy independence.

I want to run him down in the grocery store and chase him around the house before bath time.

I want to be exhausted at the end of the day, to only be able to wear my gym shoes during the day just to keep up with him.

That's all I want for Christmas: so bring it on, little plastic shoes.

Bring. It. On.

Wednesday, October 12, 2011

{requests of my memory}

Most days I am anxious for Avram to move on to the next milestone, to achieve new things. I am ready for him to be just a little bit older, to be able to do just a little bit more.

But then, there are days like today, moments like this morning, when I wish I could just freeze him in time. Moments I pray that my mind will serve me well and manage to wholly preserve.

These mornings are filled with images I pray my memory will keep close by: The moment I pick Ave up out of bed in the morning, and he wraps those little arms around my neck so tight. The serious-browed, puckered-lipped face he makes as he decides which piece of banana has the honor of being the first bite of breakfast. The tiny grunts and focused, busy hands as he tries to figure out a toy, the shriek of joy when he finds himself in the pantry (Where the Cheddar Bunnies are, of course. Who wouldn't shriek for joy?). The giddy smile on his face when he sees his dad's picture on the refrigerator, the happy "ba's" and "blllppss" I hear on the monitor when he wakes up from a nap, the loving reflex of running his chubby little fingers through the hair at the nape of my neck, his uncontrollable giggles when Dad does something funny.

My only request of my mind, my memory, is that in it's hustle to move past the pain and frustrations and anxiety, that it remembers the good, the cuddles, the after-bath smell, the big sloppy kisses. So, someday, when he is walking and talking and graduating and shaving, I can call back not only all the bad times and hard work that it took to get us there, but all of the good times and happy days, too.

Wednesday, October 5, 2011

{the speed of ten thousand horses}

We are, finally, back in the swing of things. After mountains of paperwork and lots of phone calls and weeks of waiting around, we are back in therapy. Avram qualified for Physical, Occupational, and Speech Therapy through First Steps here in Fort Wayne, so he is back in full Baby Boot Camp mode.

The first therapy appointment always feels like a sort of blind date; this stranger comes to your house, meets your family, hears your story, asks personal questions. It's a bit awkward, not knowing what their sense of humor is, or if they will be super personable or a total drill sergeant. It's pretty anxiety-ridden: Will they do a good job? Will they be tough enough? Will they be patient? Will they think we're weird? Will Avram like her?

Every time the door bell rang last week Avram & I sort of looked at each other like, "Well, how do we look? Do we look ok? Please tell me you brushed your teeth."

So far, so good. All three of our therapists seem like incredibly gifted and compassionate professionals. I am always amazed at the suggestions they make, at how changing one tiny thing makes such a huge difference in Avram. Just one small adjustment in how he holds his leg, and all the sudden he's pulling up to standing. Just changing the placement of food on his highchair tray, and he's got the pincer grasp down like an old pro. It's blows my mind. It's freaking magic.

The funny part of it all is how much Avram has changed since our last therapy sessions in Chicago. He was still pretty dependent and generally immobile back then. It's amazing how much our new house has encouraged him to explore (Especially the carpet. Oh, wonderful, soft, fall-buffering carpet! It makes me forgive how industrial-looking you are.) and become independent. I set him down on the floor to play, and bam. He's gone. He's in a cabinet somewhere, or sliding down the hallway on his belly, or sitting at the front door looking at the window, or chatting it up with himself in a mirror somewhere. Just like that, he's all big and independent. I go check on him every few minutes and he always looks at me with surprise, like, "Oh, are you still here?"

Which is wonderful.

Except for during therapy.

Where Avram used to sit and (usually) happily comply with Baby Boot Camp, now he knows he can simply turn the other way and take off. "You want me to do that? No, no thank you. I'll see you later. Thanks for stopping by though. Nice seeing you, really."

Approximately half of our therapy time so far has consisted of me chasing him down and dragging him back to the therapist.

I tell you one thing, you have to have some solid self esteem for that job. Avram is a sweet guy, but when they say "bye bye," he claps.

"You're leaving? Oh thank God! Here, let me applaud you while you exit. I'm so happy this moment has come."

He's just started cruising, he's still army crawling. He hasn't said any words, he can't stack things or smash things together yet. He sends sippy cups soaring across the kitchen. But he's babbling, he's figuring out how to pull back a car and make it go, he's opening up cabinets. He's drinking out of cups (take that, stupid sippy cups). In reality, he's more like a 9-12 month old then a 17 month old.

To others it may seem that we are progressing at a snail's pace, that we are behind. "Delayed," as they're so fond of saying in the medical world. I see the look in people's eyes when we go out, wondering why this big guy isn't walking or doing the other things he looks old enough to be doing.

But in our little world, we are flying at the speed of ten thousand horses, stampeding through fields and woods, jumping over hurdles and roadblocks, running farther than anyone ever thought, or said, we could go.

The wind is at our back again, and the little buddy shall be victorious.

Monday, August 15, 2011

{a good place}

Well, here we are. Back home.

I can't believe it's already been over a month since we moved in. It feels more like, you know, last week. We have managed to get quite a lot done: boxes are gone, pictures are hung, stuff is painted, furniture is placed.  It's a little overwhelming to finally have a place to put everything; for so long we have been in compact-living mode. Having too many drawers to choose from is such a wonderful problem.

Jason started back to school today; he is teaching tenth grade English at Columbia City High School.  Avram is all enrolled in Early Intervention for Indiana and we find out this week how often he will have therapy. He is feeding himself now, like a big show off, and claps for himself after every bite. Needless to say eating a meal takes a bit longer now. He is still doing his funky army crawl all over the place ( he is fast) and loves to stand up by himself. The poor guy wants to get moving so bad, if only his body would just cooperate. He also figured out how to open cabinets this week. Lucky me.

Our life has grown both quieter and noisier all at once. We still aren't quite used to there not being footsteps over our heads, or cigarette smoke wafting through the airways, or hearing music blaring at 2am. No more loud train rides, or horns honking, or flights of stairs to carry groceries up. It is so quiet, so peaceful.

But on the other hand, we are now adjusting to actually seeing people. Like, in person. Regularly. In Chicago, especially after Avram was born, many weeks the only people I saw other than J & Ave were the people at church. Now, we have grandparents in and out, friends to meet up with, brothers and sisters to go visit. I guess I can't get away with wearing my pjs around the house as much as I used to.

Truth be told, I love our increased social activity, because Avram is blossoming in it. Over the last six weeks he has become this totally different baby. Well, I can't even really say baby anymore, because he is looking more and more like a little boy. He is exploring every inch of our new home, becoming so independent and confident in his Adventure Man skills. He is smiling and babbling and interacting so much more. It's like he's been pushed out on to the stage in front of all these people, and he's so excited to show off his best song and dance. He beams.

All that is so wonderful, but it is also so hard. Like I said, we hardly spent time with very many people in Chicago, let alone babies. Now we have been thrust in to the dang Baby Capitol of the Universe. I swear there are more babies here than grown people. Every where we go, babies. And not just babies, but Mega Babies. It seems like there are suddenly hundreds of babies around, doing all of these things that Avram can't do yet; all these babies running around and saying full sentences and climbing on playgrounds and performing scientific experiments. I have always been aware of Ave's delay, but it has felt a little my face.

My grandma frequently says, "What difference does it make when someone is 20 years old if they first walked when they were nine months old or eighteen months old?" I know there is a lot of wisdom there, and I know that he is going to do all of those things when he is ready to do them. Maybe because Chicago was so diverse, or because we spent so much time at Children's with other kids with big challenges, or because I was in denial, but it feels a little more like we stick out here, like other moms give us the "look" because our big buddy isn't walking yet (and he is BIG. Seriously, like bigger than some two-year olds.).

Despite my insecurities and fears being a little exposed over the last month, I have never been more excited and proud to be Jason's wife, to be Avram's mama. I've been hanging up a lot of pictures the last few weeks. Looking at some of our wedding pictures, I feel like I look so young, so naive, so blissfully unaware of the struggles and sorrows ahead. I hung some pictures from soon after Avram was born, and we look so tired, so fearful, so sad: our eyes give everything away. Then I started to hang up pictures from this summer, and I think I caught a glimpse of hope, of happiness, of peace in all our faces.

We are home,
we are together,
we are in a good place.

Photo by Betsy King

Monday, June 27, 2011

{the best of times, the worst of times}

And just like that, Moving Week is upon us.

Last week we found out we were moving back to Fort Wayne, just the other day we were celebrating Avram's first birthday, yesterday we were packing for vacation. Or so it seems. Was my last blog seriously in May? Where has June gone?

Just two more days of being Chicago residents. Two more days. We tried to make a list of things we wanted to do in the city before we made the big move back home, but we ended up simply shrugging our shoulders indifferently. We really have done everything we would want to do in the city: ate at great restaurants, went sailing on the lake, toured all the museums and zoos, shopped downtown, rode the bike trails.

As excited I am about moving back to our hometown, there are definitely things I will miss about the city. The lake (I need to live by water again at some point in my life), great stores (Whole Foods, Trader Joes...just to name a few), the world-class museums, all the gorgeous parks, the diversity, being able to walk almost everywhere I need to go, the good friends we've made here.

But there are things we will not miss. In any capacity. Ever.

Like the constant linger of cigarette smoke, having traffic as life's soundtrack, psychos dropping cement blocks off our apartment rooftop onto innocent cars below (true story), cars exploding into flames outside our front window (also, true story), seeing more airplanes than stars in the sky, having my husband trapped on Lake Shore Drive, paying 10.25% sales tax, sitting next to a guy smoking pot on the train...

I could go on, but I'll spare you. Also, I have more boxes to pack.

We had some tough times here, probably our toughest times, but I think I will always remember our time here fondly. This is where J & I became our own family, where we first lived together, where we had a baby, where we paid our own bills. This is where our "mines" became "ours" and our "I's" became "us."

And for that, I will always love Chicago.

Indiana, we'll be home soon.

Friday, May 27, 2011

{the mezuzah}

The boxes are really starting to pile up around here; it sort of feels like we're living in a giant refrigerator box. I can't believe it's been three years since I was packing up wedding presents in cardboard boxes, counting the days until our big move to Chicago. That seems like just yesterday.

With packing comes the task of pruning, of purging things we no longer use, or like, or want. Every last scrap of the apartment is put through the fire: "Have we ever even used this?" "Are you really ever going to read this book?" "Can we even fix that?" 

There is an entire closet full of things that didn't pass the test, and will soon be on their way to new homes (which, if you're interested, I have wine glasses, lamp shades, craft stuff, etc etc etc if you'd like to buy them on the cheap. Sorry, shameless plug.). As I've been shuffling through all the stuff and carrying loads of junk in and out of doors, I happened to catch a glimpse of this:

It's been on the post of our front door ever since we moved in. I always had it in the back of my mind that I would look up exactly what it was, but that's exactly where the idea the back of my mind. I decided today to ask my friend, Eric, if he knew what it was. And, being the good Messianic Jew that he is, he told me.

It's a mezuzah. In Jewish homes, the mezuzah is placed on the doorpost as a fulfillment of the Torah's commandment to inscribe the words of the schema "on the doorposts of your house" (Deut. 6:9). The mezuzah is a small case with a piece of parchment inside with the prayer Schima Yisrael written: "Hear, O Israel, the LORD our God, the LORD is one."

Pretty cool.

Then I started reading about how the mezuzah is placed at an angle, with the top pointing inside the door, signifying that the Lord's presence is entering the household. I looked up what the inscription on our case means in Hebrew: the writing, שדי, is an acronym for Shomer Daltot Yisrael, "Guardian of Israel's doors."

Sorry for the lesson in Jewish traditions, and I'm not trying to say I'm an honorary Jew or anything, but when I read that "Guardian of Israel's doors" has been posted on our door frame for the last year, well, it just...stopped me. 

The Lord is guarding our door. Nothing is allowed in or out without His permission. No sickness, no hurt, no blessing, no person comes through the door of our life unless He allows it. Even when I doubt Him, when I am angry with Him, when I do not sense Him near, the Lord is guarding our door. Even though it feels like pain is rushing in like a flood, He is, still, always, guarding our door.

Our year in this apartment has been chaotic, frustrating, scary. I thought I would always remember this place as The Apartment I Called 911 In, or The Place Avram Had Seizures, but I think now I will remember it as The Place The Lord Guarded. Because even before we found this apartment, He knew we would live here, He knew what this year would hold. 

He knew, and He guarded.

And He is One: He is the same today as He was yesterday, what He promised to do He will do. 

He is One, He is good, and He is guarding our door.

Thursday, May 26, 2011

{pieces of heaven}

We are one month seizure-free. Hospital-stay free. It has been the longest stretch of peace (well, medically at least) we have had since February. Let the earth rejoice.

Avram has started this new thing where he runs his fingers through the hair at the nape of my neck whenever I carry him. He is a lover. As soon as I pick him up, he starts to slowly run his chubby little fingers through strands of hair. Every once and awhile, he will turn, beam a big teethy smile, and wrap both of those chunky arms around my neck as tight as he can.

It is, undeniably, heaven on earth.

Tuesday, May 17, 2011

{ #30 }

Well, it has officially been an entire month without a blog post, and what a month it has been: spring break, colds, birthday parties. I haven't posted anything mainly because I've just been exhausted from all the "excitement" the last five months have held. But I also haven't posted because there's only been one thing I've wanted to write about that I haven't been able to until today.

We are moving back home.

Back home to Fort Wayne.

On June 30th.

Yep, that's right, we're checking #30 off the list.

Jason got a job teaching tenth grade English at Columbia City, so we're packing our boxes and heading home.

I never would have imagined that I would be so relieved and excited to move back to Fort Wayne. Well, mostly relieved. I'm a little nervous not having the Children's Hospital nearby, especially after our bad experience at one of the hospitals in Fort Wayne over Christmas break. I'm also a teeny bit nervous about living close to all our family again; after all, we've had a pretty minimal social life the last year and a half, so we'll have to get used to not being hermits and, you know, seeing people. Like, in person.

Despite my small worries, I am relieved. The past year has been the hardest, most exhausting year of my life, and I am just relieved we will have so many family members around to help us carry the weight of it all. There was so much prayer put into this decision that I can't help but be anything be at peace. And relieved.

Avram has started saying "mama" this week, and is trying so hard to pull himself up to standing. He can hold on to the edge of the couch and do this little booty-dance all by himself. He's got some moves, man. When I watch him, I know that the best thing for him is to be surrounded by people who love him. As important as the right doctors are, having a family-worth of love is even more important.

Part of me is a little sad that J & I's adventure out in the world, all by ourselves, feels a little like it's over. For two years we were young newlyweds, living in the big city, packing up and heading out west if we felt like it, taking the train everywhere and riding our bikes along the lake. We were so independent, and then all of a sudden we are....grown-ups. Grown-ups moving back home, close to our parents, down the street from where we went to high school. where we learned to drive a car.

I know we have a lifetime of adventures ahead of us: a lifetime of family vacations and new jobs and more beautiful babies (although, I mean, they just don't make them any more beautiful than the buddy). I know that moving back to Fort Wayne in no means dictates that we are going to live a small life; I know that surrounded by so much love we are going to be able to do even more. I know that all the challenges and tears and frustrations of this past year have to lead up to something good, something beautiful, something better than we could ever imagine.

So, Indiana, we're coming home.

Tuesday, April 19, 2011


Just around the time I got pregnant, I picked up knitting. I'm not sure how and when my fascination with knitting began, but I suddenly had this incredible urge to knit stuff.

It was quite a process getting started: many afternoons J would come home to find me tangled in a ball of yarn on the couch, determined to figure out a stitch. I watched videos, read books, solicited lessons from my mother-in-law.

I was amazed to learn that knitting is, essentially, the art of tying knots. A hand-knit scarf is just hundreds and hundreds of tiny knots strung together.

A week from today, Avram will celebrate his first birthday. How is that possible? In many ways, it seems like that magical day I saw him for the first time was actually decades, centuries ago. Another lifetime. But it also feels like it was just yesterday he was trying solid food for the first time, or starting therapy, or sitting up on his own. He has magically transformed from a little slug baby into this tiny person.

This has, hands down, been the best year of my life. How could I have possibly known how much love my heart could hold for a small, stinky baby? There are millions of moments from the past year that I wish I could have bottled up and stored away to have forever.

But at the same time, this has been the hardest year of my life. I have never cried so hard, worried so uncontrollably, feared so deeply, slept so little. We have become well acquainted with doctors, hospitals, health insurance customer service representatives, medicines...emergency rooms.

I am trying to believe that the worst is behind us, that there are good things before us, that this year has only left Avram stronger and his future brighter...his story richer.

I am choosing to believe that the hundreds of tiny knots, the twists and tangles, are being woven into something beautiful; that they are not the whole story. When a blanket is hand-knit, every inch of thread has to pass through the knitter's fingertips, and I am choosing to believe that not one second of this past year has fallen from the Knitter's hands.

It may seem like chaos and pain to us now, but I  am choosing to believe that He is taking all these knots, all this mess, and knitting us into something beautiful.

"If I go up to the heavens, you are there; if I make my bed in the depths, you are there.

If I rise on the wings of the dan, if I settle on the far side of the sea, even there Your hand will guide me, Your right hand will hold me fast.

If I say, 'Surely the darkness will hide me and the light become night around me,' even the darkness will not be dark to You; the night will shine like the day, for darkness is as light to You.

For You created my inmost being; You knit me together in my mother's womb. I praise You because I am fearfully and wonderfully made; Your works are wonderful, I know that full well."

Psalm 139:9-14

Thursday, April 7, 2011

{when it rains...} pours. And pours.

Avram had a two and a half hour seizure yesterday.

Two and a half hours.

It finally stopped right before the doctors had to give him the medicine that makes it difficult to breathe. They had the breathing tubes and suction and oxygen right by his bed...and then it stopped.

Thank God. It stopped.

Guess we got our scheduled monthly disaster in early for April.

I'm not such a big fan of 2011 so far.

We really, really need some of those May flowers after all these endless showers.

Endless showers.

Tuesday, March 29, 2011

{tiny red balloon}

Somewhere deep in my chest, in the center of my rib cage, in the space between my lungs, is a tiny red balloon.

Most of the time it is deflated: just hanging, empty, unnoticed.

But whenever Avram cries too hard, or is too quiet during breakfast, it puffs up just a little. When he is fussy or has a slight fever, it inflates a little more.

When I stupidly google information about his conditions, a little more air gets blown in. When he misses a milestone or doesn't want to do his exercises, the balloon gets bigger still.

When he has a seizure, the balloon sucks up all the air in my body and fills my chest.

Little by little the tiny puffs blow up the tiny red balloon, until I can't breathe, or think, or eat. It squeezes my lungs and makes my mind race and tightens up all the tiny muscles in my neck.

But then I have a good cry with God, and the balloon deflates a little. I read some Psalms, or the Book of John, and it deflates a little more.

I hug my husband and rest my head on his shoulder, and the balloon gets smaller still.

I see that baby smile, I hear him laugh, I watch him slide like a snake all over the apartment, I taste his apple juice-flavored cheeks, and I forget, once again, about the tiny balloon.

It's always there, and I doubt it ever won't be. I am learning that life is much more little-by-little than big leaps at a time. Little by little the tiny red balloon becomes tinier, and tinier.

Little by little.

Wednesday, March 23, 2011

{sitting, watching, waiting}

Well, here we are at the hospital again.

Tuesday morning I got up, happy that the little man had slept through the night after our recent battles with the evil Night Terrors. He was still quiet when I got up, so I made a quick phone call to my dad and mentioned that Avram was sleeping in late. As soon as I hung up the phone I started to worry, so I went in to check on him.

I walked in to find him covered in vomit, staring in to space.

I called 911.

He was responsive, but limp, and at my first-very-panicky-glance it looked like there was blood in his vomit. The firetruck and ambulance came screaming down our street, and before I knew it I was standing in my foyer, still dressed in pjs, crying, handing my baby over to three giant firemen.

I must have looked like a real nut job.

The paramedics checked out his throw-up and took Avram's vitals, meanwhile telling me to put some real clothes on and pack a diaper bag. They decided that his vitals were stable, the dark junk in his vomit was not blood, and that he was responsive, and told me that they would let J & I take him to the emergency room on our own if we wanted. J came home from work and we rushed him in to the children's hospital.

We spent the next nine hours in a closet-sized room in the ER while they took just about every possible fluid from Avram's poor body: blood, urine, snot, spinal fluid. After a CT scan and series of x-rays the neurosurgeon came in to tell us that Ave's shunt was fine, which was my biggest concern. Vomiting, fever, and irritability can be signs that his shunt is either malfunctioning or infected; which, if that was the case, he would have been rushed in to surgery. So, knowing that his shunt was ok made us feel a lot better.

Sort of.

He wasn't keeping anything down: milk, pedialyte...nothing. His fever stayed at 102 for most of the morning, and nothing would console him. He cried all day, refusing to sleep.

At 7:30pm the hospital admitted us and took us upstairs to our room. Avram took a bottle, promptly brought it back to the surface, and then drifted off to sleep.

J went back home for the night, since the hospital only allows one parent to sleep over. With the buddy sleeping soundly, I tried to settle in for the night. Unfortunately, I apparently do not weigh enough to keep the fold-out chairs in the bed position: each time I stretched out & snoozed off, the bed would snap back into chair form, like that old Donald Duck cartoon.

So far the doctors think he just has a bad virus: a really swollen throat, ear infection, that sort of thing. They have him on fluids, an antibiotic, and some Tylenol for his throat. Poor guy still can't bear to eat or drink anything. Thankfully, he's sleeping now.

I love Children's Memorial. I honestly do. The doctors are patient, always answer our questions thoroughly, and never make us feel like we're just another item on their to-do list. The nurses are helpful, kind, and check on us frequently. My only frustration has been Avram's discomfort. Since 2pm yesterday he has either been sleeping or crying: much more the latter than the former. He is inconsolable.

I have had a hard time being patient with the doctors when their only answer is to run more tests, to keep an eye on him. I want him to stop crying. I don't want him to be in pain. Give him something so he's not in pain, doc!  Do whatever you have to do to find out what's wrong, but let him get some rest already.

I am trying to be patient. I am trying to be Avram's best advocate while letting the doctors do their jobs. I am trying to remember that God is a builder and not a magician.

I want them to fix the symptoms, they want to find the source.

I want a temporary fix, but they want a permanent solution.

So we wait.

He is sleeping now, so we are sitting. Sitting, watching, waiting.

Monday, March 14, 2011

{waiting for morning}

Last week was rough.

It wasn't like one big thing dropped, but a lot of tiny things piled up until I just couldn't see the sky anymore. It's always an adjustment coming back to Chicago after traveling, and then Avram had his tiny seizure on Wednesday morning. Then he had night terrors. Every. Single. Night.

Shooting out of bed to the sound of my ten-month-old is screaming at two in the morning probably tops the list of Least Favorite Ways to Wake Up.

As she has many times, my mom came to the rescue this weekend and took care of the little buddy so J & I could get out of the house and breathe for awhile. Having that time to ourselves this weekend has just made the start of this week so much easier.

Last night we only had one night terror episode, a vast improvement from the 4-5 he's been having each night. Going in to soothe him during one of these episodes is just down right bizarre. He's screaming at the top of his lungs, but he's still asleep. Waking him up only startles him more, so we're supposed to just make sure he doesn't hurt himself and gently rub his back. It's hard to imagine someone still sleeping while crying loud enough to probably wake up everyone in our building, but he does. And it's not like he cries for five or six minutes, it's usually 15 or 20. So weird.

Supposedly he might have them for a week or so and then stop. Fingers & toes crossed on that one.

What is possibly even more amazing that Avram's ability to sleep through his screams is that he is still his happy, charming little self during the day. His favorite "toy" right now is his box of wipes. He has figured out how to open up the top and pull out the wipes one by one.

So, this morning, he had pulled out a wipe and started to chew on it.

I said, "No." and gently pulled his hands from his mouth. He smiled, then started to eat the wipe again.


Smile, eat.


Smile, giggle, eat.


Belly laugh.

This tiny man is definitely going to give me a run for my money.

I am just amazed that he can have such a rough night and then be so happy during the day. Lately it seems that just one foul play will mess me up for days. Maybe I've gone soft, maybe I'm letting the Bad things win, maybe I just need a good kick in the pants. Whatever it is, I'm a little grateful for the Night Terrors this week. Because no matter how fear-filled or restless Avram's nights are, his days are always overflowing with joy.

No matter how dark the night, morning always comes.

No matter how dark the night, the light is always brighter.

Maybe I just needed to be reminded of that this week.

"Still, if you set your heart on God and reach out to Him, if you scrub your hands of sin & refuse to entertain evil, you'll be able to face the world unashamed and keep a firm grip on life, guiltless and fearless.

You'll forget your troubles; they'll be like old, faded photographs. Your world will be washed in sunshine, every shadow dispersed by dayspring.

Full of hope, you'll relax, confident again; you'll look around, sit back, and take it easy."

Job 11:12-18, The Message

Thursday, March 10, 2011

{ jinxed }

I just need to keep my big mouth shut.

Less than a week after the Sun-Times article came out, Avram had his first seizure.

Two days after I mentioned that we were officially two months seizure free, Avram had his third seizure.

Yes, Avram had his third seizure this week. It was tiny, almost unnoticeable. If he hadn't been sitting in his high chair, I may not have even noticed it. Just after breakfast his right foot started twitching, and I had to administer the emergency seizure medicine since it continued for over five minutes. Then, he was happy and continued about his business. It was really, really strange: to have part of Ave's body just spazz out, then having to stick something up his rear to have it stop.

I'm frustrated. Frustrated because the medicine was supposed to keep this from happening, because we have never missed a dose. Frustrated because we were told what to do, we did it, and it didn't work. Frustrated because this probably means he'll be on medicine longer than expected.

This is not what is supposed to happen.

Obviously, I'm not being a very good Christian about all this today. I'm just a little peeved today. A little human and a little pissed off and a little disappointed. I want God to fix this, and I want Him to fix it now. I don't like this. One bit.

We're taking Avram to the Children's Hospital in a little bit just to make sure his shunt is ok. Hopefully we'll be home later this afternoon.

**Update: shunt is good. It was probably the emergency seizure medicine that made him super fussy again last night, but we're still keeping an eye on him. He's good. And after a little time in Psalms, mom is better, too. Still peeved & anxious, but better.

Monday, February 28, 2011

{30 by 30}

I turn twenty five this week. Twenty five.

A couple months ago J & I were talking about my upcoming birthday, and he warned me about the life-questioning that would soon settle in. He was very sincere, but it all just sounded a little too cliche; you know, all that "what am I doing with my life?" and "who am I?" business. C'mon.

Well folks, here I am: wondering who I am and what I'm doing with my life and where this is all going. My quarter-life crisis, if you will.

The first half of my twenties was fantastic: I lived in Atlanta, had an awesome job as a youth pastor, was in several of my closest friends' weddings. I met a guy, fell in love, had the perfect wedding, had a beautiful baby. I finished my associates degree, I sang at some pretty big worship events, I visited my first national park.

Now that I'm staring down the barrel at the last half of my twenties, I decided I wanted to make a list of things to accomplish by the big 3-0. I debated whether or not to share it, then I thought...oh, what the heck. Some of them are silly, some are a little personal, some are admittedly challenging, but this is The List. I know that checking these items off in no way assures that I will magically be transformed into the person I want to be or that my existence will somehow be more meaningful. I just know that life is getting crazier by the day, and if I don't write things down, they just might get lost in the shuffle.

So ladies and gentlemen, I present you with my list (in no particular order).

1. Read Lord of the Rings. I just need to.

2. Run a marathon. I know. So does everybody.

3. Learn how to change a tire. 

4. Learn how to drive a stick shift. Mainly because I just want to drive my brother's MG.

5. Go to the Johnny Appleseed Festival. As unbelievable as this may sound, I grew up in Fort Wayne and managed to never go. It's one of the biggest things Fort Wayne has, and I have never been. Time to change that.

6. Make a quilt. A real one. I've made blankets, but I want to make a real-deal quilt. I think I'll make one for Avram's bed as he graduates to a bigger bed.

7. Plant a vegetable garden. One of my favorite childhood memories is helping my dad with the garden, and I can't wait for our little family to have one of our own.

8. Learn how to can veggies. Obviously closely related to item #7. With produce prices on the the rise, I want to help our family make as much of our own food as possible. I really want to teach our kids where food comes from and how precious of a gift it really is.

9.Get a bicycle. Ok, so I had one. How it ceased to exist is a funny story for another time. We're really looking forward to family bike rides in the next few years, so having my own bicycle is pretty essential.

10. Get paid to do something. As in, you know, a job. I've never been more clueless as to what I want to "do," but I am understanding more and more that I will never be defined by my occupation. Regardless, I want to bring home some bacon. No idea what that means yet, but I want to at least have an idea in the next five years.

11. Get my bachelor's degree. This is probably the most challenging one of all, considering Avram won't be in school all day until I'm 30. Also because I have no idea what I will major in. Regardless, it's on the list.

12. Learn how to crochet. I'm a knitting machine. Apparently crocheting is easier than knitting. I'd like to see for myself.

13. Take a photography class/learn how to use a real camera. This one also includes purchasing a nicer camera. I love our little Canon Powershot, but as Avram gets older and we have more tiny people running around, I really want to be able to capture as much as I can. I have no idea what I'm doing right now; I just push buttons and keep taking pictures until it looks, um, alright.

14. Read the Bible. A lot of people make it their goal to read the entire Bible in a year. I think that's great and all, but that's a lot of serious reading for one year. I read the whole Bible in a summer once, and I remembered zilch. If you're flying through the Bible that fast, how much are you really absorbing? Maybe it works for some people. I want to take the next five years and read the whole sucker; I want to take my time and eat up every word.

15. Go kayaking. I've been canoeing, whitewater rafting, paddle-boating...time to give kayaking a shot.

16. Go cross-country skiing. ...why not?

17. Buy my own power tools. I just need to own a drill. And a really sweet staple gun. And a saw. And a nail gun. And...

18. Finish the American Film Institute Top 100 Movies. J & I started the list about three years ago, and we're more than halfway done. It will probably take us another two years to finish. Then, we'll probably start all over again. They're that good.

19. Start assembling a real wardrobe. I need to start putting together a grown-up's closet. Preferrably one that does not include sweatpants purchased in the kids' section. Or any items that I wore in high school. Or anything from Forever 21. I honestly think this will be the second hardest item on the list, because I'm tiny. And not a whole lot of adult stores carrying clothes for tiny people. But I shall not yield.

20. Take a trip with just my husband. Our five year anniversary will be in 2013, and I'm hoping we can take a real trip together. Not just somewhere for the weekend (which we will undoubtably do), but a real trip together.

21. Use my passport. Between the ages of 10 and 20, I traveled to more foreign countries than many people do in their entire lifetime. Israel, Northern Ireland, Haiti, Scotland, Germany, France, Switzerland. Want to know how many times I've left the country since I turned 20? ZERO. This could also go with item #20, because Jason has never been out of the country, and I'm excited to take him somewhere. Even if it's Canada.

22. Record my dad telling stories. Being a good storyteller is very important in our family, and my dad is a real show off. He can tell a story like no one else. Jason has pointed out that Paul & I will let my dad tell a story we've all heard at least a dozen times just to hear him tell it.  I wish we had recordings of my grandpa telling stories, because sometimes I would love to hear his voice again. I really want to start a project of recording my dad telling stories about my grandpa, his childhood, my brother & me as someday, maybe our grandkids or great-grandkids can hear what a great storyteller he was.

23. Take a trip with my mom. My mom is one of my favorite people to hang out with. And no one deserves a vacation more than she does. One of my favorite childhood vacations was when my mom and I went to Florida together, and I hope we can travel somewhere together in the next five years.

24. Have an article published in a magazine. Dreaming big here, people.

25. Have another baby (or two).  Yep.


26. Brown County

27. Sleeping Bear Dunes

28. Glacier National Park

29. Jenn in Nebraska. Jenn, one of my BFFs, moved to Lincoln, Nebraska this year. I visited her when she lived in Detroit, in New Hampshire, and in Pennsylvannia, so it just makes sense!

30. Move back to Fort Wayne. Hopefully this will be the first item checked off. If you would have asked me ten years ago if I wanted to live in Fort Wayne, I probably would have laughed. And rolled my eyes. Now, there's nowhere else we would rather live, and I'm willing to do just about anything to make sure it happens.

There are a lot of things I want to do in the next five years that are not on this list, but these are things I really want to see happen. Maybe they will, maybe they won't.

What matters the most is that I have my little family, that we're all healthy, that we're happy: and so far we've got those things, so my road to 30 is off to a pretty good start.

Friday, February 18, 2011

{mary poppins & therapy balls}

We are heading back to Fort Wayne this weekend, so our morning has been filled with bag-packing, trash-emptying, refrigerator-cleaning, and don't-forget-this-reminders. I definitely do not have packing a family of three down to an art; somehow despite my best efforts to simplify we always depart with a car full of junk we probably won't need.

Amidst all the hustle and bustle around here, there have been countless tiny celebrations the last few days. Avram is back in Physical Therapy and has officially kicked off Occupational Therapy. I have to admit, I love our physical therapists, but OT is so much fun.

For one, our therapist comes with this huge duffel bag full of toys, like she's Mary Poppins or something. It's a never ending supply of bright, blinking, noisy things to bash together and chew on and throw across the room. Also, Ave gets to use a neon green therapy ball. It. Is. Awesome. He bounces on it, rolls on it, smacks it...don't even get me started on how fun it is to roll it back and forth with him. When he sees it bouncing his direction he just throws his head back with giggles, wild with abandon. The babe is in love.

Possibly the best part about Occupational Therapy is that it hardly feels like therapy. It's more like guided play time. Physical Therapy is work, man. I mean, it's Baby Boot Camp for crying out loud. He has to roll and do sit ups and all these fancy balancing exercises. Tough stuff, kids.

It has been so encouraging the last few days to see the results of just one week of the Big Guy being back in therapy. Other people might not notice, but he seems like a different baby every week. J & I can see so many changes in him: how he holds his toys, how he uses his arms, the way he reacts to things, how much confidence he has, how strong he is getting. I mean, just five months ago he was this Slug Baby, unable to even hold his head up. Now he's rolling all over the place, sitting up on his own, getting into all kinds of trouble.

I think I'm finally get God's drift in all this. I've fought and questioned Him every step of the way: from helmets to therapy to medicine...but He has yet to fail us, yet to let us down. If I am learning anything through all of this, it is definitely that I do not always know what is best.  With each new path He takes us down, I am seeing His wisdom, I am learning to trust Him. There are so many of the right people in Avram's life right now, so many hands on the banks of the river. We are where we are supposed to be for this moment.

We need a good year, and it is certainly shaping up to be just that.

Friday, February 11, 2011

{shouts of joy}

I may need to work on my reactions.

Two days ago, Ave used his right hand instead of his left hand. For the first time.

I yelled, "Good job!!!!"

Yesterday, the little booger took a piece of cereal in his fingers, brought it up to his mouth, and ate it. All by himself.

I shouted, "YES!" and then burst into tears.

Both times, the buddy's eyes widened like a spooked little owl, and he spent a couple seconds deciding if he was going to cry or laugh. Luckily he chose the latter, and we had quite the gigglefest afterwords. Regardless, I probably need to tone down my excitement over new accomplishments, at least as far as my volume is concerned.

Otherwise, the next time he starts to try something new he'll probably stop and think,

"Well, I really want to crawl over there and gnaw on that shoe. But if I do, that crazy lady will probably get all worked up and make a big scene about it. I should probably just stay here."

Avram, redecorating the living room for me

Wednesday, February 9, 2011

{we survived}

What. A. Week.

I have to admit that I ate my words.

Last Monday I scoffed at the weather reports that this blizzard would be one of the worst in Chicago's history. Yeah. Psh. Right.

On Tuesday, my husband was sitting in his car for 11 hours on Lake Shore Drive, trapped by 70mph winds, 24 inches of snow, and hundreds of abandoned vehicles.

Our poor car was in there, somewhere.

Yes, ladies and gentlemen, Jason was one of the thousands of motorists forced to finally abandon their cars on Lake Shore. He left school at 3pm, as soon as he was allowed to leave; which was, of course, the exact same time the blizzard hit Chicago. He called me at 5pm to say it would be a couple hours. He called at 7:30pm to say two more hours. He called at 8:30pm to say he was probably spending the night in his car.

Once, J got out of his car to scrape the ice off his windshield. When he got back in the car, he discovered that he had sand in his hair and on his face. The wind was rocking the car back and forth hard enough that he actually thought it was going to tip over. The lake had 20-foot waves, threatening to flood Lake Shore Drive.The snow piled up until was level with the car windows. Scary stuff, people.

After 11 hours in his car, two and a half hours on public transit, and half an hour walking a mile in the snow to our apartment, J got home at 4:15am.

We finally got a hold of 311 on Wednesday night, and were told that our car was "either in the parking lot at Wilson or somewhere on the Fullerton ramp." Helpful. J finally found our poor little Toyota in the parking lot at Foster: covered in two inches of ice and the engine packed full of snow.

As is the case in many natural (and unnatural) disasters, mankind's best was brought out: J found himself amazed by the selflessness and compassion of strangers. Two different families let them use their cell phone, strangers walked up and down the road passing out bottled water and granola bars. He spoke highest of the firefighters who spent hour after hour outside in the wind and freezing temperatures: carrying those requiring medical attention away on snowmobiles, helping people push their cars, knocking on each car window to offer their assistance.

And, unfortunately, as is also the case in disasters, it brought out the worst in some. We couldn't believe when the city came out saying that it was the motorists' fault for getting stuck out there: especially when it was the city buses that caused the back-ups in the first place. Witnessing the corruption and inefficiency of the public school system over the last three years has been pretty disheartening, but then seeing the city so quick to place the blame on its own citizens was just very, very sad.

All that to say, I have had to set aside my frustration with the city this week and try to apply that cheesy, over-used Ghandi quote about being the change you want to see in the world and all that gushy stuff. If I'm going to criticize the way Chicago's public officials handled Snowmageddon, I need to reevaluate how I react to the bad, the negative, the tiny disasters.

I can be pretty quick to shuffle off the blame, to point fingers, to look for the easy way out. This week was a good reminder to our little family that showing grace and kindness is always, always the road to choose, that there is goodness left in mankind.

Oh, and that keeping a blanket or two in the car is a very, very good idea.

Our street, post-Snowmageddon

Tuesday, February 1, 2011

{state of the beers address}

Well, we are all hunkered down for the Blizzard of the Century here: flashlights powered, shelves and fridge stocked, medicines refilled and blankets on the ready. The grocery store was out of shovels last night, so my ever-industrious husband made one out of a storage tub lid, duct tape, and broom. Bring it on, Snowmageddon '11.

While I'm sitting here waiting for our apartment to be transformed into an igloo, I thought I would offer a quick update to let everyone know that we are still alive up here. It's been a much-too exciting start to the new year (nothing says "Happy New Year" like meeting your out-of-pocket maximum less than two weeks in to January), so we've just sort of been lying low lately. You know, watching re-runs of The Office and eating a lot of frozen pizza.

I took Ave for a check-up with his neurologist last week. This man is nearly impossible to book an appointment with. After Ave's seizures we really needed to get in to see him, but his next available appointment in the city was in April. Seriously?

So, we had to drive an hour and a half, in the snow, to the south suburbs last Thursday to see Dr.Taco. He was sporting his usual attire: fluorescent green Hawaiian shirt, slicked back mullet, Mickey Mouse stethoscope. All in all, he had nothing but encouraging things to say. He said that Avram is more than likely to outgrow the seizures than to keep having them; at some point they should stop. We are going to stay on the Keppra (which is, ironically, the same medicine my dad takes. They're anti-seizure med buds now.) for a year and then wean him off to see what happens. I can't say I'm a big fan of trial-and-error medicine when it comes to my baby, but they're the pros. Neurology is not one of my leisurely hobbies so I guess my job here is to trust.

I also learned that I should say he has "Cortical Dysgenesis" instead of "Schizencephaly." Tomatoes, tomah-toes.

Not only does he have the Keppra, but they also gave us a prescription for an emergency rectal dose of a medicine to stop seizures. Chalk that up for another thing to freak out potential babysitters.

"Ok, here is a list of all 10 signs his shunt may be malfunctioning. If you think that's happening, call us right away. If you can't reach us, call the Neurosurgery On-Call Pager. If you can't reach them, go to the Emergency Room. If he has a seizure lasting 5 minutes or longer, put this up his rear-end. Then, call the Neurology On-Call Pager. If you can't reach them, call this number for the Children's Hospital. If you can't reach them, go to the Emergency Room. Here are the instructions for his medicine, which he needs to take between 7-7:30pm tonight. And just in case, here are the numbers for his Pediatrician, Physical Therapist, Occupational Therapist, Neurologist, Neurosurgeon, and Ophthalmologist."

So whooo wants to babysit?

I wonder what parents normally leave with the sitter. What, like the Poison Control number?

Anyways. Back to the update.

We took Avram to see Dr.Rob Bell for his nine-month check up on Saturday, and that appointment also went swimmingly well. I'm just crazy about this pediatrician. I mean, the guy had on a watch made from Legos. And he rides his bike to work everyday.  And he makes the most fantastically corny jokes. So endearing.

Our little man is now 31 inches tall and weighs 22 and half pounds, putting him in the 94th% for height and 85th% for weight. Thatta boy.

The appointment went like almost exactly like all our appointments with the pediatrician have gone: the doctor comes in, sits down, and just talks with us for half an hour. Avram pulls out his Frank Sinatra routine and babbles and smiles the whole time, just charming everybody half to death; then Dr.Rob Bell makes jokes about him being malnourished.That's usually Avram's cue to spit up all over the floor, but we managed to skip that scene this month.

Then, the nurse came in to give him his shots. She took one look at him and said,

"Wow, he's got a lot of stripes on. He looks like he should be in prison."


People say the most bizarre things.

Probably the most exciting news I have to share is that the little man started sitting up all by himself this month. He has officially graduated from Slug Baby status. He gets so pleased with himself while he's sitting that he does these terrific little bounces and starts flapping his arms up and down, like he's about to take flight. He's becoming a professional roller as well, and when he gets stuck underneath a chair or against the couch he finds it absolutely hi-larious.

I really needed something good to happen this month, and something very, very good has happened.

Anyways. All that to say, we are doing just fine. Jason is successfully making connections to find a job back in our hometown for this fall, I'm planning on scouring our apartment of all things unnecessary in preparation for (hopefully) moving this summer. The Lord has been kind enough to put the perfect doctors along the banks of the river for us here in Chicago, but I think in the long run having family close by is a infinitely more important than having the right doctors close by. We just need to be back around our family. And I mean, let's be honest, who else is going to babysit?

The big sitter, nine months old

Friday, January 21, 2011

{two thousand and lovin'}

Even though it has officially been 2011 for over a few weeks, it is just now starting to feeling like the new year for me. Celebrating the holidays back in Fort Wayne sort of delays the feeling of a fresh start: it seems to kick in once we are settled back in to things here in Chicago.

I don't know if I have ever been more ready for a year to be over.  What a crazy year. This was, in some ways, the best year of my life. I mean, I had a baby. An actual baby. How crazy is that? I gave life to another human being this year. That blows my mind. We moved into an awesome apartment.  I started writing again. J finished his poetry collection. Good things.

But this year has also, in many ways, been the worst year of my life. Discouraging doctors appointments. Scary hospital stays. Surgeries, seizures, hours of physical therapy. I spent a lot of time worrying this year. A lot of time afraid, uncertain.

I also had to sing a Miley Cyrus song, while eight months pregnant and unable to breathe, with Joel Houston sitting five feet in front of me. The entire time I was silently praying, "Oh Lord Jesus, if You love me, please do not let my water break in front of Joel Houston. Please don't let my water break in front of Joel Houston."

Not sure what category that experience falls under. Anyways.

This week I cleaned out all our closets, scrubbed down the whole apartment, and even went all Britney Spears on myself and chopped off eight inches of my hair. I needed last year off of my shoulders, I needed the stuff of yesterday chopped off, I needed the remains of last year cut away. And let me tell you, it feels good.

I've never been one to really make New Years resolutions. I've heard that you actually have a greater chance of fulfilling your resolutions if you don't tell people what they are. Who knows.

If I were to make resolutions, they would be very simple. Something like,

This year, I will be kinder to myself, to my body.

This year, I will choose to see the good: in every person, in every situation, in myself.

This year, I will take one. Day. At. A. Time.

This year, I will do more of the things I love, spend more time with the people I love.

This year, I will find Jesus afresh, in new ways, in new faces, in quiet moments.

This year, I will love my husband, and I will love my little guy: with homemade chocolate chip cookies and handmade scarfs and lots of snuggles.

I may not be able to quit eating Oreos or work out everyday or learn Italian this year. But these things, I can do these things. I can love. No matter what happens with J's job, or Avram's health, or where our friends move or how crazy family can be...this year, I can love. I can cut away the bad and make something beautiful with it.

2010, good-bye and good riddance.

2011, let's do it.

For your viewing pleasure, our 2010 video. Music courtesy of Mumford & Sons and Feist.

2010 from Cassie Beer on Vimeo.

Thursday, January 13, 2011

{a letter}

Dearest Avram,

At 12:45am on Tuesday you woke up screaming, which was very unusual for you. Your dad and I were up for two hours trying everything we knew to try to console you; we even gave you a bath. When nothing worked, we called your pediatrician and he told us to take you to the hospital. Of course, once we put you in the car seat and took off, you fell right to sleep. We tried to wake you up once we got to the hospital, but you just wanted to sleep. We thought you must be fine or maybe just had bad gas, so we turned around and drove back home.

Once we parked on our street I picked you up out of your car seat, being careful not to wake you up.

And then you started to seize.

We drove back to the hospital. Fast.

After two days and a whole lot of tests, the doctors decided that the schizencephaly is causing your seizures, and that for now you should be on daily medicine. Medicine that makes you sleepy, and grouchy. It stops the seizures, yes. But so far you just don't seem like you, and I am hoping, praying that will change.

You will never remember the last two days, but I will never forget them. I will never forget the feeling of my heart in my throat as we drove back to the hospital, or how limp your poor, tired little body felt in my arms as I ran into the emergency room with you. I will never forget how helpless you looked, lying on the hospital bed hooked up to all those monitors and IVs, or how desperately I wanted to take all your pain away.

I will never forget rocking you to sleep in your hospital room, with tears running down my face, asking God how He could let this happen, how I was supposed to not be mad at Him right now, how He was planning on fixing all of this. Asking Him to help me trust, to help us be good parents, to give the doctors wisdom. To heal you. 

I will never forget the relief I felt when you opened your eyes and smiled and started babbling away.

I will never forget, but you will never remember. You will not remember this pain, this exhaustion. You will not remember the doctors, or the nurses, or the tests. You will hear us tell doctors about it when they ask about your medical history, or when we tell stories about it years and years from now, when it will all seem like a bad dream...but you will not remember. And for that, I am grateful.

You may not remember all of this, but it is shaping who you will be for the rest of your life. I believe that all of this will make you more a tune to the pains and needs of others, and teach you to be kinder, more compassionate to everyone. I believe all of this is making you tough as nails, making you strong, able to handle whatever life throws your way with grace and patience. I believe all of this is making you grateful for the life you have, grateful for every blessing God grants, grateful for the things you do have and not anxious about the things you don't. And I believe God is teaching me to be all these things through you, and you are teaching me so much: you never complain or fuss, you never worry, you are only interested in the present moment, you are unfailingly kind.

I believe the medicine is temporary. I believe you will outgrow these seizures. I believe that you will keep exceeding the doctors' expectations by leaps and bounds and miles. I don't believe that you are going to live a normal life: I believe you will live an extraordinary one. I believe that you will grow up with an amazing story of Grace, of Healing, of Hope.

I love you with every bone and fiber in my body, with all the force of the universe, and I am infinitely proud of you: of what you have been through, of who you are, and of who you are going to become.


your mama