{ #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.

{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.

{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.

{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.

"No."

Smile, eat.

"No."

Smile, giggle, eat.

"No."

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

{ 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.