The Sum of His Parts

Seven years ago around this time I wrote this.  If you don’t have time to read it, no worries; I can fill you in. Cyrus had been in the hospital for two months, weighed less than 5 pounds, still, and two of the family’s cats died within that time span. I wrote about the book of Job in the Bible. How I felt like I was being tested. How fucking dramatic and ridiculous that whole story is.

But here I sit, in the hospital with Cyrus again. The machines have been beeping for 15 minutes straight, rousing him from sleep, with the same noise they made seven years ago, when the oxygen in his blood fell from 100% to 15%. When he nearly died all the time. When he had seizures. When I became not just a parent, but joined the preemie parent club. A group in which I wanted no membership.

So, in the scheme of all the awful things that could happen (and have happened) to Cyrus, another broken arm isn’t bad. Unless you start to do the math of the amount of times he’s been in the hospital the past year. It’s something like 6 or 7. He’s been put under general anesthesia at least half of those times. A major surgery in August. Two broken arms since November. And now. Third time’s the fucking charm.

It’s his left arm. A level 3 supracondylar fracture. He had a level 2 in November; they had to place two pins and a cast. It’ll happen again in the morning. He just got the cast off his right arm on April 4 and was cleared for physical activity 10 days ago.

Now. Why do I tell you this? I’m not sure.

There are definitely times I want your sympathy, your kind words, your anger and bitterness of the injustices in the world of parenting. (Yes, the most self-serving, first world problems)

Sometimes I tell you because maybe I want to justify my overprotective parenting or his constant need for help up and down stairs. If you notice, he grabs my hand a lot for help. He knows he needs it. He’s so cautious.

This happened today, reportedly, when he was walking through the cafeteria at school. One minute he was walking; the next he was on the ground crying and holding his elbow. When the nurse called and said he fell, I could only say, “C’mon. No.”

Some of you have wondered at his condition: does he have weak bones? Was that caused by being a preemie? What do the doctors say? What can be done?

So far the answer seems to be bad luck. But I know that his motor skills aren’t equal to those of other kids his age. He stumbles a lot. His eyesight isn’t great. He lacks maybe 20 degrees of peripheral vision.

The even shittier thing is that when he last had this break, he was just learning to write well. He started writing with his right hand, and things got all confused. He basically had to go back to the beginning. And now. He’s almost to second grade and in 25% SPED classes because he can’t really write. He eats through a tube in his stomach. He goes to therapies. Blah blah fucking blah. You know all of this already.

Doctors struggle to treat him as a whole human person. Even the doctor this afternoon, who listened when I said he had severe anxiety about being in a hospital, admitted she hadn’t looked up his medical history “that far back”-which meant November. It’s become a joke when someone walks in the room and says, “any medical history?” I scoff. And that’s the exact word I mean to use. I tell them they can read all about him in the system. He should have seven whole years of information there. If they press, I give the abridged version, “25 weeker. Seizures. ROP. Nissen. Feeding tube.” Cyrus’s ailments and procedures aren’t countable on all my fingers anymore.

***

This space intentionally blank for you to grasp the million dollar bill from the NICU, plus all procedures that came after.

Now. Think about all that without insurance.

The trauma plus the bill would be more than enough to kill and entire family.

***

Every time something happens, some doctor says, “He’s doing great for a 25 weeker!” (You throw really good. For a girl.)  I know that he is great. I’m so happy he is alive and thriving. He is intelligent and caring. He is relaxed. He seems to be some sort of gamer nerd in the making. He also wants to be a football player. But just once I would like a doctor to say how amazing he is. Period. Or to look at him like he’s been through it all. Like he’s older than 7. I want someone who recognizes that he’s not just a kid with a broken arm, but a kid who’s had a whole bunch of bullshit happen to him. A kid who has never gone a year without a hospital visit. A kid who is afraid of steps and running. A kid who is afraid to eat. A kid who screams, sweats, and shakes when he sees one of the kids’ hospital gowns with “sleepy tiger” written all over it under cutesy pictures of a cartoon tiger.

I said so many years ago that I’d take broken bones over seizures and eating issues any day.

I guess I didn’t realize my wish would come true.

 

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