This is the Day

There is finally an answer to the ultimate question we’ve all asked for years: today.

Today is the day Cyrus’s button, that fucking port in his stomach where the feeding tube has been hooked up thousands of times, is coming out. Fuck. I’ll even do some math. The tube was inserted about 6 times a day for nearly 8 years…2,735 times is a conservative estimate. For more than two years, the first two of his life, he had to be hooked up to a pump for a better part of the day. Then came the bolus feeds. Then came those times when he’d be out of the house for more than a couple of hours and someone would’ve forgotten the tube. There would be a trip back to the house to retrieve it.

His life revolved around that goddamn tube. If the button broke, which it did many times, he couldn’t eat until it was reinserted, either at home or at a hospital. There were times it fell out and the hole closed and had to be re stretched. There were times when the tube that connected to the button would break. There were so many fucking times that he’d cough in the middle of a feeding and milky liquid would fly everywhere. My house smelled like the sweet rottenness of dairy, soaked into the carpets, the couches, the beds, the sheets, his clothes. There were times when I forgot to feed him.

It was hard to find a babysitter; the tube is a scary thing. He had to go to a particular preschool because they were willing to tube him while others didn’t have the insurance coverage for it. My dad has never tubed him. Very few of you have ever done it. He had to have a doctor’s note in order for the nurse at his school to give him water. Tap water. A doctor’s note. He needed a doctor’s note when he required more tube food in the day. In order for the school to feed him, a doctor had to say so. A doctor has controlled most of his food intake: how much, when, what, how. Until Gaby came, made a nutritious, real smoothie. Of course, I had the instinct to ask the doctor, anyone in a white coat, if it was okay. I had to ask if it was okay to feed my kid. I had to relearn that part of myself.

As I wrote a bit earlier, he has gone without a full day’s feeding since October 1st. It was that time that he was given a tube, secretly, while he was sleeping. When his button broke on November 27th, that seemed a sign that it was time. He hasn’t used the button since.

His eighth birthday is in 15 days. He got the tube in July of 2010. That’s a lot of years for everyone to have to deal with that thing.

He is really excited.

It feels impossible to tell you how ecstatic I am about this. Today is the shedding of the last layer of weighted sadness I still wear from the NICU. The final symbol of all that pain, all of those muddy days of mere existence.

Since he was born, people have said eventually he’d outgrow all of his preemie problems. I was naive to think that they meant “soon.” I suppose in the span of his life, 8 years isn’t a long time to deal with all that’s been thrown at him. For me, though, that’s been the first 8 years of my parenting experience. Doctors, therapists, surgeries. That’s all I’ve known. That’s all he’s known. That’s all you’ve known of him, too.

That’s not even 1/100th of who he his.

If you see me this week and I’m staring into space, I promise I am not sad. If you see me crying, I’m not sad. If you see me drinking too much, I am not sad. I’m light and airy. I am made of sunshine.

The grass is turning green. The buds are forming. The birds are singing. Cyrus’s long winter is over.

The long days of sunshine that pull life from under the dark soil are finally here.

 

 

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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.

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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.