Monday, January 13, 2014

Complex, Partial Parenting

Every-single-time it happens like this:  I'm driving. The sun is shining. The song on the radio is mediocre. I catch myself noticing small things; a leaf surfing the wind, some cows all facing the same direction, cars merging at the same, choreographed speed. And I smile. I start singing the mediocre song like it's my favorite. Despite all the loss in my life, I think of all the things I have that make me happy. I cry a little-the happy kind. My shoulders relax. I nod my head. Yes, world.

Then, within the next days, something horrible happens. This time it was a seizure. This time I startled awake at 4:24 a.m., reached for my phone, and saw 8 missed calls. There was a strange voicemail, "he's seizing. they're on their way to women's and children's.

Cyrus started having seizures just days after he was born. His sinewy, tiny red arm would move, like he was fist pumping at some cheesy rock concert. He was less than two pounds. He had seizures because, as the doctors say, "It's just what preemies do."  He had another seizure like that within the next months, right before he had eye surgery. Our little man was still only 38 weeks gestation when that happened. Since he left the NICU, he's had several, but they are a strange, glassy-eyed kind. He can still move around the room. Play a little bit. But he just stares and doesn't respond to his name. The last time he was in the hospital was August of 2012, for this very thing.

Not too long ago his school called to say he "checked out" while they were playing outside. When he finally came to he said, "I peed." 

Despite these seizures, he hasn't really been diagnosed with anything; it's frustrating as hell. Once doctors realize he's a 25 weeker, they just say, "Well..."  They've done that about his feeding tube. They treat us like we're idiots. They look and say, "Well, he is a 25 weeker."  Like, we should settle for the feeding tube because of that. Like, we should just be thankful he survived and shut up about everything else. He has random seizures of unknown origin..."Well, he was born at 25..."  We know. We cannot un-know all of that.

Don't get me wrong, here. We absolutely know how lucky we are to have such a bright, sweet, and funny child after his incredibly rough start. We know the statistics. We saw, with our own eyes, the tiny babies who came to the NICU. We were members of the babies who were weighed by grams and ounces club. ( I can't count the amount of condiment containers I've stared at in diners and thought, "he weighed as much as a full ketchup bottle." ) The parents we met one day and never saw again.

So, these seizures don't seem to have a real cause. They are unpredictable. But, every time we check out of the hospital, we get a paper that says, "Complex Partial Epilepsy." And we are given a sheet full of appointments with doctors. We are given a stern look and a talking-to about going to the appointments. We always do. They always shrug and tell us the tests are normal. The medicine should stay the same. And, of course, "Well, he is a..."

*     *     *

This is the first terrible thing that's happened to Cyrus since Mindy and I split up. I keep my phone on silent when I sleep, but, as I learned very early Sunday morning, I shouldn't do that anymore. Luckily, the universe told me to wake-up when I did.

I didn't see this seizure. Mindy says it was different. Bigger. Scarier. So, she called 911. They drove, with our seizing child, the speed limit. With no lights. He seized for 25 minutes. We just learned today, at check out, that they were very close to intubating him in the ER. I'll save my hatred for that group of medical workers for another time. I will tell you that Mindy had to request they give him oxygen on his non-hurried, thousands of dollars trip to the hospital.

The sad truth is simply: Mindy and I are excellent in hospitals together. We know what our roles are and swap them at the appropriate time. To the observer, it might look like an innate trait. We sort of sleep-walk our way through it. If you see us parenting in the hospital, best leave us alone. Never wake a sleep-walker.

It's not until we wake that we see the destruction.

*   *   *

Cyrus walked out of the hospital by himself, occasionally holding my hand or Steiny's. Then Mindy's. I drove my own car to Mindy's house where I tried to carry him inside. "I want to do it by myself," he said. He ran in and started playing with the cats and two tractors he'd left on the floor. Mindy went to the pharmacy to get his new prescription filled. Meanwhile, we played balloon ball. He tried to ride me like I was a horse. He told me to pretend to sleep. He grabbed the balloon and said, "run with me, Mom!"

Since it's Monday, it's Mindy's time to have him. I decided to leave. I hugged him. I hugged Mindy long and hard. We cried, of course. I told her that maybe one day we'll get a break.  And I looked down on the rug at our beautiful son. He was playing with a Thomas the Tank Engine train track. But mostly watching us. I went back to hug him again and cried a little harder. He looked up at me, "Mom, are you feeling sad?"  I told him I was. He hugged me and patted my back. Then he looked at me again, made an empathetic frown, and put his small finger tip against my eyelid. "Mom, do you have a tear?"


  1. I don't know what it feels like to be you or what it feels like to be Mindy. I do know that I can feel something when I read your posts - rather, read your life as it happens - and it's a feeling of weight on my chest. And then anxiety sets in. I like to read these posts because they are based on the truth. As I read, and learn that you and Mindy are not back together as a couple (which, I'll be honest, I've been patiently waiting for that post for some time now) I feel comfort in knowing that you will always be together as parents to Cy. And that's what is most important, I believe. I'll still be keeping my fingers crossed though, and I don't know if it's because you seem to be good together or because you have a child together, or if it's believing in the people you know and love and having so much hope for them, that everything will get back to "normal." Maybe I hope for you two because I've lived without it. And because I just love you and want you to be a happy family.

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