{latest project}

I know I haven't blogged in an eternity, but I wanted to jump on and share one of my latest projects with you all. I was so honored that my good friend Erin Loechner asked me to write and record a song for her newest endeavor, Clementine Daily.

I love the philosophy behind this site because it embraces the reality of the everyday woman. There are so many design and lifestyle blogs out there that seem so unattainable, but Erin & her team have created this welcoming place that celebrates the beauty in daily simplicities. I love it. It was super nerve wracking to try to write a song that would in some way communicate all that, but the process was so refreshing and inspiring for me. It was the first time anyone has asked me to do anything like that, and I loved every minute of it.

Clementine Daily 001 from Erin on Vimeo.


So Erin, congrats on your launch this past week! And thanks again for entrusting me with a tiny part of your big dream. :)

{questions i do not have the answers to}

"You must be so relieved."

This is the most common thing people say when they meet Augie: that we must be so relieved.

Relieved to not be pregnant anymore? Ab-so-lutely. I rather enjoy seeing my toes again.

Relieved that he is here? Heavens yes. Nine months is a long time.

But this is not what they mean.

Relieved that it didn't go like Avram's delivery?

Relieved that Augie doesn't have Avram's medical diagnosis?

If I say "oh yes, of course," what does that mean?

Does that mean I think that Avram's quality of life is lesser, that his arrival was less sweet, his path an undesired one? Does that mean I wish Avram wasn't...Avram?

If I say "no," well, I sound like a crazy person.

We prayed for a healthy baby with Avram, we prayed for a healthy baby with August.

Were our prayers only answered once, or were they answered both times?

If once, then what happened the other time? Did we do something wrong...did Avram? Were our prayers not sincere enough, not frequent enough, not pure enough?

If once, why would God only answer our prayers for one of our boys, but not the other?

Is that how God works?

I don't believe so.

So how does He work?

I believe He hears, and I believe He answers. I believe He loves both of my boys. I believe He is gracious, and compassionate, and close to the broken-hearted, and just.

I believe, but I do not understand.

{when three became four}

Friday, August 10th was a cold and rainy day: by August's standards, anyway. Avram had spent the night at Jason's parents house, and we were getting ready to meet them for breakfast at Cosmo's.

As we were puddling around the house I said to J, "This would be a good day to have a baby. I could have a baby today."

An hour later I was eating two eggs sunny-side up, trying not to let on that I was having contractions every ten minutes.

Two hours later, I was sitting in my doctor's office, five centimeters dilated and contractions coming every seven minutes. "I'll meet you at the hospital," she said. My dad had driven me to the appointment. When we got back in the car, the man couldn't have stopped smiling and giggling if you'd offered him a million bucks.

Dad dropped me off at home and took Avram with him. Jason and I changed our clothes, ran through all our lists one last time, packed our bags in the car. We put our seat belts on and looked at each other. Jason prayed.

By one pm, Jason and I were nervously, giddily staring at each other in the hospital room. We would meet our second son today.

The hours creeped by: through contractions and phone calls from excited family members and joking with the nurses and snacking on lemon Italian ice. I made Jason take meal breaks. I distracted myself with HGTV and some custom-made playlists.

The contractions grew stronger and faster: the nurse said it was time to push.

Three pushes later, and there he was.

August Rhodes was born at 9:58pm, six pounds 15 ounces, 21 inches long. Kicking and crying and limbs flailing everywhere, like a butterfly.

All brand new and all familiar at the same time: meeting him for the first time but feeling like I have known him my whole life.

Jason beamed like Christmas morning as he handed August to me: this wide-eyed, peaceful, glowing bundle of life. He nursed right away: this novel task he faced like a seasoned professional.

There was no anxiety or fear, no tension or concerned voices. Just...peace. Augie slipped right into our lives that Friday night, just like he had always been, like it was exactly where he belonged:

With us.

Our family of four.

picture by the ever-wonderful Betsy King

tuesday nights

My husband is easily the most interesting person I have ever known. He is always trying to better himself: be it through teaching himself Latin, or learning how to bake bread from scratch. I've heard him say several times how frustrating it is to have spent nearly his entire life in school and to have a bachelor's degree from a great liberal arts school, but yet have no idea how to grow his own food or fix anything in his house.

In response, Jason has taken up a serious study of organic farming. There are green beans, sweet corn, radishes, carrots, sugar snap peas, and all kinds of herbs growing in our garden right now, as well as about 30 tomato plants in our kitchen waiting to be transplanted. My freezer is full of all sorts of bread-- rye, wheat, ciabatta--you name it, all baked with love by my husband.

His latest endeavor involves taking an Introduction to Construction class at Ivy Tech this summer. He was crazy cute as he was getting ready to leave for his first class: sporting his "work boots" and grungiest jeans. I am so proud of him for being so eager to learn, to try new things.

And as proud as I am, I was also slightly bothered. His class goes from 5-10:30pm every Tuesday night. His school is out for the summer now, and I have been so excited to have him home for the next three months, especially as I increasingly embrace my walrus-like shape. So, I wasn't looking forward to having Jason gone for nearly six hours once a week (woe is me, I know).

He took off for his class last night, just as Avram was waking up from his nap. As my buddy and I sat down for dinner together, it hit me: these are the last times it will be just the two of us. For two years we've spent the better part of nearly everyday together. Jason is now home for the summer, and by the time school starts back up in the fall we will be a family of four.

The next six Tuesday nights are the last times it will be just me and my buddy.

I worry that Avram will be jealous of all the attention his new little brother gets, that he won't understand why this tiny creature is suddenly living in our house. I worry that all that progress Avram has made will suddenly slow down because he doesn't have 100% of my attention all day. I also worry he won't quite understand how gentle he has to be with a baby, especially when he's already discovered the buttons on the baby swing (I just know I'm going to walk in to the living room one day and find that baby swinging on full blast).

With Avram (heck, life, really), there are always new anxieties, new problems to face, new challenges to overcome. But for now, I am stuffing them back into the recesses of my heart, and turning all the stage lights on to this beautiful boy I have gotten to spend nearly every waking moment with the last two years.

I want this summer to go by slowly, despite how uncomfortable it is to have a big hot beach ball strapped around my middle. I want to soak up these minutes with my boy, to drink in his cheesy smile and sloppy kisses, to bask in his newfound joy of parading around the house. I want to have more memories of this summer than of just feeling hot and huge; I want to remember what it was like as just the two of us.

So for the next few Tuesday nights, I'm not putting in any Thomas the Train videos or dumping out my tupperware to keep Avram entertained. Last night we went for a walk together, just the two of us, just like we used to do every single day in Chicago. We snuggled on the big bed and read his favorite books. I let him stay up a little later, I let him run around naked after his bath for way longer than he needed to (what is it about running around in the nude that makes little boys so absolutely giddy?). Things we do just about every day anyway, but more purposefully, more attentively.

All it took was one tiny realization for me to go from slightly cranky to incredibly grateful for these last few bits of time with my big guy.

I know he is going to be the absolute best big brother, but he is always, always going to be my sweet baby.

{unbearable joy}

Avram has decided that, since he is now a big two year old guy, it is time for him to start walking. Almost out of nowhere, he is suddenly toddling across the living, unsteadily bounding down the hallway. He holds his hands straight out in front of him, like a zombie, and occasionally slaps his hands together in one loud clap as if the joy of independent movement is just too good, too sweet to be true.

I am still getting used to seeing him come strolling around a corner, or to not instinctively dive for him when I feel him let go of my finger. You can always hear him coming: not because of his footsteps, but because he physically cannot take more than a couple strides without releasing a shrill of joy.

He is so very, very pleased with himself.

Avram has also decided that, since he is now a big two year old guy, that it is time for him to make his own decisions. Seemingly overnight he has started throwing fits when we try to redirect his activities: throwing his body on the ground, hitting, biting, chucking his food across the kitchen if we're not cooperating with his plan. It's almost comical to see the little wheels in his head turning, how he will wait until Jason and I look before he does something he's not supposed to. Or how after being told "no" he moseys over to give me a big hug.

Little schemer.

All three of his therapists are thrilled to see his independence and desire to assert his will. I smile and nod. Oh yes, it's so fantastic!

I know that a child's first steps bring a lot of tears for parents: happy and sad. I thought they would for me. But oddly enough, I haven't cried. Happy or sad tears.

Maybe it's because I've got the whacky pregnancy hormones, maybe it's because he still can't quite stand still by himself (it's easier for your muscles to stay in action that to hold themselves in place) so he still needs a lot of help.

Mostly, I think it's because I'm just so darn proud my whole body feels like it will explode.

This boy they told me would undoubtedly be completely reliant on us for his entire life, this boy has started escaping the house through the screen door. This boy has learned how to carry objects from one room to the next: leaving me to find my nail polish underneath the living room rug. This boy is fighting to get out of my arms whenever we are outside so he can show the world how fantastically his skinny little chicken legs work.

I'll probably cry when he goes to preschool, or the first night he sleeps in his big boy bed. Or the first time I see him after this new peanut arrives, because I know that Avram will suddenly seem like a full grown person.

But for now, I'm just making those happy screeches right along with my buddy: we are so proud to prove the world wrong, so proud of each wobbly, toddling step. So proud of how far we have come, how hard he has worked, how tough his skin is.

The joy is almost too much to bear.

My big two year old guy.

I went in to get Avram up from his nap Thursday afternoon, and there he was.

I don't know if there is any way to describe that feeling--what it's like to walk into a room and see your baby like that. I don't think there are words for it. I know I won't ever forget it, but I don't know if I will ever really be able to talk about it, to express it.

He had obviously been seizing for awhile, because for the first time ever it had spread to his whole body. I carried him out to the living room, gave him his emergency medicine and called 911, staring at his tiny blue fingertips. 

Strapped into the side of the ambulance watching my boy's body shake, all I could think of was all the things I did wrong, all the things I should have done.

 I should have called the doctor about his cough yesterday. I should have gone in to check on him earlier. I should have increased his medicine last week. I should have prevented this, I should have protected him. At least from it being this bad. 

I should have.

His seizure lasted a long time, even after the doctors were able to stop his body from moving. They had to put him on a ventilator to make sure he would be able to breathe.

We were just closing in on the One Year Anniversary of being hospital stay free. April 7th. We were so close. He has done so well. And here we were once again.

The doctors determined that he had a pretty serious respiratory infection, and the next morning they told us he had pneumonia. When he is that sick, his seizure medication becomes less effective. It's much easier for him to have a seizure when his body is fighting illness. He may have started a fever during his nap, which started the whole thing.

We stayed in the PICU that night, and when Avram came out of his sedation the next morning he decided he was done with his breathing tube and coughed it out. They tried to keep an oxygen mask on his nose, but he eventually ripped that out, too. The nurses all joked that he had taken charge of making his own medical decisions. If there is one thing I know, it is that my boy is one tough little cookie.

By Sunday morning his team of doctors felt that his breathing had stabilized, he was safe from seizures for the time being, and that his fever was gone. We were sent home. 

I am very impressed with the new hospital, and I am very grateful that I can see it from my driveway. The PICU has literally been open for two weeks; Avram was the first child they had had on a ventilator (Lucky us!). I am grateful for the access to healthcare we have, when so many parents around the world will never be able to get their babies to a hospital, will never be able to see a qualified physician. I am grateful for the health insurance we have, even if it doesn't pay for every last penny it certainly pays more than we ever could alone. I am grateful for a shunt that allows my son to live, for medication that keeps him from having seizures (most of the time). We are blessed.

Avram had a hot meal, a hot bath, and clean pajamas. He is so happy to not have dozens of wires restricting his movements, or to be confined to a tiny crib. 

I rocked him a little longer than usual tonight, letting him run his fingers through my hair and nuzzle his nose into my neck. I stood up to lay him in bed, and I froze. To lay him back down in that same exact place. To put his head on that same pillow, in that same bed. 

Does he know? Does he remember?

I feel like the standard phrase of comfort people give in situations like ours is that God chose me and Jason, that He entrusted us with this boy. God chose us to take care of him. He had a little boy who needed extra care, and He chose us to give it.

This doesn't offer me the comfort that I think it is intended to. My beef with God isn't that He chose me. I will care for this boy until my dying breath, with all the love and patience my heart can muster. Caring for Avram is possibly the greatest gift of my life, no one has to point that out to me.

 My beef with God is that He chose Avram, that He chose this sweet, loving, funny, beautiful boy to go through all this. My beef with God is that He lets Avram bear all this pain, not me. 

I stood there for awhile, just holding him, just staring down at the lump in the mattress. I prayed for grace. I prayed for the strength to be kind to myself. I prayed for Help to continue to be present, to be in the places I cannot always be, to heal the things I cannot: in Avram, in myself.

I prayed for sweet, peaceful sleep for my boy.

{a celebration of chaos}

So far this week Avram has:

1. Climbed out his crib during nap time and silently terrorized his bedroom.
2. Managed to sneak in the kitchen and get out the back patio door.
3. Shattered a glass bowl all over the tile floor.
4. Emptied all the laundry baskets onto our bedroom floor.
5. Snapped my sunglasses in half.
6. Taken eight (yes, EIGHT) steps in a row on his own.

This boy they told me would probably never breathe on his own, or walk on his own, or be able to communicate with the rest of the world.

This boy is giving his mama a run for her money, and he's certainly going to keep his little brother on his toes.

And I am grateful for, and loving, every nerve-wracking, adrenaline-rushing, mess-filled minute of it.

{the working out of all things}

Yes, it's true. A new Beer is entering the world.

Originally the plan was to wait until Avram was walking, but well, you know how plans go. I will be 14 weeks along tomorrow, and between the ultrasound a couple weeks ago and my jeans no longer zipping it is all starting to feel very real. Avram is taking 3-4 "lunging" steps at a time, so we are making good progress. But this mama needs him to walk soon, people. He is one heavy little dude.

I walked in to my first OB appointment with head held high, with the Peace that passes all understanding. But still, when the doctor first held up that fetal heart rate monitor it took every ounce of internal fortitude to not rip it from her hands and chuck it across the room.

We've been told, time and time again, that Avram's condition is not genetic, just spontaneous. Just something that "happened." 

But...still.

My doctor had me see the high risk specialist in the practice just to be safe. The ultrasound went great, the little peanut is one gorgeous little symmetrical pod. The doctor answered all my questions, questions about pregnancy discomforts, what activities and foods to avoid, and hospital policies. They both answered all the questions that they are equipped to answer.

But those are not all the questions.

What if something is wrong again?

What if it's even worse this time?

I don't know if we could survive that again.

Or what if nothing is wrong? What if this baby is perfect? If he or she is, will I always be harder on them because they don't have the challenges Avram has? Will they be patient with their big brother, will they be on his side? Will having a "normal" hospital stay make me mourn again the rough start that Avram had?

There are a lot of questions the doctors can't answer, many fears they cannot calm.

I know, with a deep Knowing, that everything will work out for good. I know it. I know that no matter what, it will be good. I know that everything with Avram has worked out for so, so much good, and will continue to. There is a deep, deep knowing; a deep, deep emphatic "yes" to all that the future holds. We will have each other, we will have our family, we will be four hearts that love each other. I can't wait to meet another member of our little tribe.

But sometimes it's the working out, it's the waiting that's just so awfully hard. There are still questions, still thoughts late in the night, still flashbacks of pain. The working out is tough, it is the stretching of the clay, the waiting of the seed to sprout, the pruning of weeds.

It is a good hard, a strengthening hard, and so far know, we are waiting--in the midst of the hard--for the working out of all things.

All things for good.

{finding solace in the manger}

I have started this entry over and over again, trying to accurately describe something that happened in early December. I just can't get it right, so I'll say this.

I had a pretty awful experience leaving Avram with someone else. To be fair to them, they were overwhelmed, and unsure what to do with a non-walking-but-still-very-mobile-and-large little boy in a room full of kids of all ages.

When I came back to get him, he had been stuck in a corner in a walker (which he has never used) all by himself.

It's taken me awhile to write about it because, to be honest, it's just felt too raw. I knew they were busy, I knew it was chaotic, I knew they had too many kids and not enough people. But it still...it still ripped my heart out.

All I could think about, could ask myself, when I saw him there, sitting in the corner by himself was if this was just a preview of what is to come. What happens when I send him off to school someday, when I can't be with him all the time? Is there going to be someone to be patient with him, to take the time to work with him? Is someone going to look out for him, to understand him? Will there be someone on his side? Or will he be stuck in a corner because he's different, because it takes him longer to do what other kids do?

I dumped all this on a couple dear friends, and one of them graciously reminded me that two thousand years ago there was a young mom, with a son. A young mom stuck in a manger in a tiny corner of the world, with a baby she knew was different. She had to wonder: What will the world do to him? What happens when I can't protect him anymore? Will anyone understand him, will anyone be on his side?

In Luke it says that Mary kept all these things and buried them deep in her heart. The angels, the shepherds, the wise men. Somehow she had to know that as different as her son was, that these things were signs of comfort, signs of good things to come, signs of promise.

So instead of dwelling on all the "what if's," I am trying to keep all these things and bury them deep in my heart. The smiles, the therapy milestones, the babbles, the almost-first-steps.

These are signs of comfort,
signs of good things that will outweigh the bad,
signs of promise.

{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."

Years.


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

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.

{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.

{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.

{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.

{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 more...in 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

{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.

{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 stayed...in 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.

{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.

{ #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.

{knots}

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

{when it rains...}

...it 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.