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.